Wednesday, February 25, 2009

Gentamicin Injections

Since I haven’t had any big attacks since the beginning of the year and only a few small dizzy spells that went away quickly, I’m wondering of the gentamicin injections are finally working.

I had my first injection at the end of June last year. I researched on the internet all that I could find on gentamicin injections. I found that there were usually three or four injections in the ear that had the Meniere’s disease. And the injections were relatively painless. The success rate was high.

I was nervous on the day of the first injections. I didn’t know what to expect. The injections were to be given in my left ear. I asked the Doctor how he could be sure that my left ear was the problem. He told me that since I had lost a good deal of hearing in that ear that more than likely was the bad ear.

Before the injection the doctor numbed the eardrum. It was a freezing sensation that was very uncomfortable. Now it was time to put a tiny hole into my eardrum. I had my head tilted so I couldn’t see the needle. My wife, who was in the room, told me that it was good I didn’t see the needle.

The pain was intense, maybe it was just me but it hurt quite a bit. After that, the gentamicin was shot through the hole. Part of the medicine drained out through the Eustachian tube into my mouth. Very unpleasant! If that wasn’t bad enough I started to become dizzy. The doctor told me that was normal and the dizziness would go away in a few minutes. It did.

At that point the procedure was done and all that I had to do was keep my head tilted to one side for 45 minutes.

I had a total of 4 injections with two weeks between each one. After the last one I felt that my MD was cured. That feeling lasted about a month. For the next three months I had some of my worst attacks.

But now 6 months later I am feeling much better. I can’t say for sure if it was the gentamicin or not. I’ll keep you updated.

281 comments:

  1. My doctor is wanting me to have the gentamicin injections and I want to know how wobbly you got and how long this lasted and was it worth the treatment. Also, do you have tinnitus and did the injections make this go away?

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  2. Looking back on the whole experience I would say that it was definitely worth it. My balance was bad for a while but things are alot better now. I don't have tinnitus so I'm not sure that it would help.
    thanks for commenting and let me know how things are going
    David

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  3. Do you take the flu vaccine with Meniere's Disease and if you do have you had any adverse reactions due to Meniere's?

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  4. I have taken the flu shot in the past and I haven't had any bad reaction. But you never know with meniere's what will set it off.
    David

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  5. IHAD GENTAMICIN INJECTION 5 WEEKS AGO,BUT STILL FEEL OFF BALLANCE,HOW LONG DID YOU FEEL OFF BALLANCE

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  6. Right after the procedure I was ok for awhile then my balance and my driving was bad for a couple of months.
    but my balance seemed to be better after that and I felt a lot better

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  7. I've been trying to get info about the gent injection and this seems to be the right place. I've had Menieres for about three years and am contemplating having the gent injection. However from my research I get the impression that I am quite lucky in that my attacks last about 40 mins max - worst case scenario - and often less. Sure I sometimes feel pretty ropey the day after a bad attack, but mostly I recover the same day. I've even had an attack on the golf course - not severe enough to make me fall down - and after a couple of wobbly holes I've been fine. The thing that worries me is that my consultant says that the injection may cause me to have 'permanently reduced balance capability' My hospital doctor on the other hand says that my left ear is so bad that I won't have problems as my body has already learned to compensate. The thing is that at the moment I am perfectly fine when not having an attack - and the attacks are a pain in the butt but maneagable. I don't want go to a situation where I have no more attacks but am permanently struggling balance -wise. I suspect that most people who go for the gent injection are in much poorer shape than I currently am and therefore the trade - off is, in their cases, worth it. I am fearfull that I made end up worse off overall.Any comments would be most appreciated. How bad were you before you had the gent injection? That is my question to the experienced people out there. My reason for considering the gent injection is that recently I had two attacks at home which were swift and violent - like being struck by lightening I imagine - and as a result I have banned myself from driving, which is quite a problem. I was thinking that the gent injection would stop all attacks and therefore enable me to drive again
    Hoping to hear from some of you
    Whealie

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  8. I've been told that i can have a gent injection if I want one. But the consultant said that it might leave me with 'reduced balance capability' whatever that means. I have had menieres for about three years but most of the attacks are manageable and between attacks I am fine. recently i had a couple of violent and swift 'spins'whilst at home and as a result I have stopped driving as a precaution. This is a major inconvenience and my hope is that a gent injection will kill my bad ear and kill the menieres at the same time. My dilemma is that I suspect that many of the people that have had the injection were suffering greatly from their attacks so the trade -off was an easy decision. I dont want to have the injection only to find that iI have no more attacks but am permanently off balance. I'd like to hear more from people who have had the injection(s) especially about how bad they were before and after the treatment.
    Whealie

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  9. Whealie,
    After I had my last gent injection last summer (I had a total of 4 shots), my balance was bad for about 3 months, so bad that I had to go on short term disability. Gradually my balance adjusted and since then I haven’ had any extremely bad attacks like the kind that I have had in the past years. I occasionally go through some bad times with attacks but nothing it was in the past. Something that also helped me earlier this year was having VRT therapy. Usually this type of therapy isn’t recommended for Meniere’s patients but in my case it helped.
    So I can say that the gent injections worked for me but I know others that it hasn’t been effective. Meniere’s is a strange disorder in that the cause of it is not always certain and there isn’t a cure for it.
    Good luck, and if you have any other questions don’t hesitate to ask.
    David

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  10. Whealie, i had my gentamicin injections in my left ear two weeks ago...my doc filled and emptied my ear three times in one sitting, and, as David said, it can be a very painful procedure for some people, especially if you happen to have bad ears in the first place like i do...i have had disabling Menieres attacks for the past two years prior to this intervention, had tried every other option that didnt involve invasive procedures, all to no avail, so i had high hopes that the gentamicin would help...well, its two weeks post gentamicin now, and while i had about four days of feeling good, it has gradually been replaced with increasingly disabling imbalnce/disequilibrium...its like being drunk without a drop of alcohol in your system...my doctor neglected to inform me of the possibility of worsening balance (he did tell me my hearing may possibly get slightly worse, but that it would eventually improve..its definitely worse, look forward to an improvement soon, i hope!!!), and i am a single mom of 3 special needs children, so this is more than just an inconvenience, its really causing me to struggle...i agree with David that driving a vehicle can be challenging too, as i cannot look right or left, or even in my rear view mirrors, without getting extremely off balance and nauseous...its akin to being on a spinning ride at the county fair...and certainly not fun afterwards....
    If you dont absolutely HAVE to have the gentamicin I would consider holding off, because you seem to be managing the attacks fairly well at this point...if you do decide to go ahead be prepared to have some (hopefully short term) balance issues...i am just hoping that mine is not a case of perpetual imbalance..ugh...best of luck on making the best decision for your situation, and in your battle with Menieres

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  11. You are so right about how bad your balance is after the gent injections. To this day I don't know why the doctor tell me about the side effects of them.
    thanks for the comment

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  12. I had gent injection now over 2 years ago. My experience of Menieres was 'hell' to say the least. I remember my balance was pretty horrid for over 6 months. Then, things settled. I must say even now I still need to be aware - so no turning my head to quickly. Small price to pay for what is now 2 years of no attacks. My attacks were pretty bad - I also experienced drop attacks. I still do get mild, very mild dizziness, tinnitus in my ear and my hearing is pretty bad. But hey, no attacks! That has to be worth it! Success. I would definately recco it to any sufferer.

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  13. It has been over a year since I have had the gent injections and I can definitely say that it was worth the pain.
    David

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  14. I have had Meniere's Disease for a few years now, and at 28 it is finally progressed to interfere with work, I also have tinnitus and hearing damage in one ear. I am thinking about getting the gent injection, but they said it will probably destroy my residual hearing in the one ear. Have you had any reduced hearing ability after the injection and has your Meniere's traveled to your other ear? although I would do just about anything to get rid of the dizzy spells.

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  15. I didn't personally have any reduced hearing in the ear that received the gent injections. but I have read that it has affected other's hearing. I did have some hearing damage in the ear before I got the shots but I didn't have the tinnitus.
    Good luck and keep in touch
    David

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  16. I'm scheduled to have a gentimicin injection in 2 weeks and am very nervous about it, I've lived with MD on and off for the past 9 years. I had a stunt fitted in my left ear a month ago to help with pressure, but since then have been having constant attacks, they've been so bad that my GP has prescribed stemitil injections for me to self administer to help with the vomiting. I understand from my consultant thst it's a one course injection (may be different here as I'm in the UK). I'm praying the injection works as I'm having attacks daily which wipe me out for 3-4 hours. ince the grommet I've bee off work as I can't trust the MD to allow me to commute/drive, or get through a day. Mark

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  17. Mark
    Don't be nervous hopefully the gent injections will help you. Don't get discouraged if you dont' feel better right away. It took me some time for the shots to help but it was well worth it.
    good luck and let us know how it went.
    David

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  18. im going to get the injection in 3 days, but then i have to fly across the country to nyc for a long weekend.... will i be okay you think? my symptoms are terrible currently, i feel i have nothing to lose... any advice wud help, thanks justin

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  19. I didn't feel very good after the injections but everybody is different. It is best to tell your doctor of your plans
    David

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  20. how long did you feel lousy after the injections?

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  21. My balance wasn't good for a few months

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  22. well, my balance is awful as is, i doubt anything cud really make it worse.... can i ask how the first few days after the first injection were for you? were you laid up? was it different than what u experienced a few weeks later? (and i will discuss with the doc, but he hasnt had the injection after all, =)
    thanks for your time david,
    justin

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  23. I have had MD for 10+ years. My biggest issue is my job-and I work for a major university, teaching hospital! I finally filed FMLA papers to protect me some but my supervisor keeps telling me she knows someone with MD and that person doesn't have the issues I do. She feels she knows more about it than I do. I am on job modification but am probably going to lose it one the time period for the modifications have ended. Almost all of my normal job duties have been taken from me (I work in an office not building skyscrapers) and have been told that perhaps I should consider retirement. I am on all the right drugs, treatment, diet etc butam in a period of episodes. I am trying to figure out what my rights are. The stress of the threat of job loss due to a disease is only adding to it.

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  24. Some people who have meniere's don't have as bad as others. Unfortunately there doesn't seem to much information about meniere's out in the general public.
    I wish I could tell you how to deal with the stress but sadly it is something that most of us with meniere's have to deal with.
    Good luck and keep in touch

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  25. I agree with you and appreciate your comment and certainly realize many deal with this issue, unfortunately. I have always been considered a good employee and this is very hard on my self esteem. My prior supervisor knew someone who has it much worse than me and was more understanding. And the attacks were less seldom then. I believe working for someone with some understanding equaled less stress equaled fewer episodes. My job change was beyond my control to keep one at the same institution after major layoffs. But I need the insurance so badly which is the scary part of job loss that so many people are having to deal with. If anyone has any suggestions I am certainly open to them and truly appreciate them.

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  26. I am currently going thru gent injections, and so far had 5, and will continue each week. I have really bad vertigo, so bad that I couldnt get out of bed for falling over, MD is a terrible disease, but I am starting to feel better, and not had any vertigo attacks for 3 weeks. Only thing is that I am currently disorientated as soon as I move, but this is normal as my balance is re-learning again.

    For all those out there with questions, I have been 80% deaf in my left ear for 3 years, the gent injections have not changed this (yet) and am having hearing tests every week to make sure that it doesnt get worse.

    Gent will never get rid of Tinnitus, I have had that for 8 years, and is 100% constant, it never goes, gets louder at times and is a pain, but to be honest, if you can get rid of the vertigo, the deafness and tinnutus dont matter, you will get used to it, as much as you think you wont, I guarantee you will. If you have bad vertigo the go with Gent, if you have vertigo which is just now and then, I would think twice, as yeah it could make it worse, but I only went with gent as my life was ruined and I couldnt do anything at all.

    I am starting to get stronger and do a lot more things since about 3 weeks ago.

    I had a saccus decompression op last year which was useless, was only out of hospital two weeks and the vertogo started again.

    I have lived the last 3 years in a horrendous state, but now I feel I am on the mend.

    Good luck to all of you out there suffering with this, believe me there is light at the end of the tunnel, and whatever you do, dont give up on hope.!

    bry

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  27. Bry,
    I am glad to hear that you are feeling better. Those gent injections can be rather painful but they eventually work.
    I am surprised that the saccus decompression didn't work any better than it did. But I guess with meniere's you really never know what will work and what wouldn't.
    Lately I have been getting the tinnitus and that drives me crazy. I don't know how you can stand it all the time and for that many years.
    I appreciate your comment and stay in touch.

    David

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  28. I had my first injection on March 1. I thought the procedure was very painful, luckily it only lasts for 30 seconds or less. I was told that in 3 to 10 days I would probably get dizzy. Well, sure enough, on March 4 I started to get nausea and dizziness. It is March 7 now and I probably slept 60+ of the last 72 hours. I feel like I'm drunk, like my head is a swaying fish bowl! I'm quickly becoming more depressed thinking this is what I have to look forward to. If my next two injections produce this same feeling I don't even want to go thru with them. Can anybody help cheer me up?

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  29. Domenic,
    I know that it can be dreadful knowing that you have 2 more gent injections but you have to look past that and remember that it will help you. but it does take time
    good luck and stay in touch
    David

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  30. Well I had my first Gent injection last week and it worked great for 3 days but upon going to work Monday morning it was all back. I have a follow up appointment this week and Im sure he'll probably schedule another injection. Not looking forward to that cause it hurt really bad! I almost passed out! My dizziness MOSTLY affects me while driving. I commute 60 miles a day to and from work. I have no option but to get this under control. Lots of prayers for each and every one of you! :)

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  31. Driving was a big problem for me too. Good luck and I hope that your balance gets straighten out real soon.
    Keep in touch
    David

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  32. Hiya, well now had my 7th injection and still going strong, no vertigo for nearly 2 months!

    My consultant is giving me a lot smaller dosage on each injection, and this is try to avoid any more hearing damage, and it seems like it is working, I see from some posts that some are finding it painful and still getting vertigo, I would speak to your consultants about having smaller dosages of gent, it may help.

    Although, we're all different.

    David, in regards to the Saccus decomp op, I too were suprised that i was only free of vertigo 2 weeks, I was gutted.

    In regards to having tinnutus for so long, I actually forget that I have it, until I go to bed, but I use a Fan to mask the sound, so it is not an issue anymore, you will get used to it

    Bry

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  33. Bry,
    That is good news! I hope you continue to be free of vertigo. I have read that smaller doses are better, I think that Dr. Hain recommends that.
    I know that surgery you had must of been rough and only being vertigo free for a couple of weeks only made things more difficult.
    It's good that you are dealing with your tinnitus also.
    Good luck and stay in touch
    David

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  34. Has anyone researched or consulted with their physicians about a "low
    dosage" gentamicin? I just read about it here

    - http://www.dizziness-and-balance.com/treatment/ttg.html

    Low dosage is two injections with a month in between. Most people commenting seem to be getting the "regular" or standard dosage.

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  35. tae-young,
    I think some have commented on it in later posts. I'm not sure.
    David

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  36. I am thinking about having the gent injection, The dizzy spells are really starting to scare me (I actually fell and hit my head) and Im afraid I may lose my job. I also do not have health insurance, do you know about how much these injections cost? And some people say they felt much better after the injection, and some say that they felt worse for a couple months. I can handle and work with a little dizziness but the attacks have got to go.

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  37. I'm not really sure how much the gent injections cost, my insurance paid for it. the shots seemed to help for me after a few months of having problems with my balance. It has been about a year and a half and I haven't had any major attacks like I did before, although I still get attacks but not quite as bad.
    like a lot of treatments for meniere's some things work and some things don't.
    good luck and stay in touch.
    David

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  38. just came from my Doctor visit, and he told me about this injection don't know what to do right now crying have to drive to work a single Mom of two please some one help .Thanks

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  39. There are a lot of folks that have found relief with the gent injections. I know it is a difficult decision to make but you must keep trying. Work with your doctor on finding the best solution for you.
    Hang in there and things will get better! Stay in touch and let us know how you are doing.
    David

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  40. I had my first gent injection 3 days ago. Felt dizzy the next day but nothing to bad. I am waiting to see what happens. The waiting is killing me. I wonder will it all hit me a month from now? I know everyone is different. I hope it works. I have had this awful disease for 12 years and I am all done. I want my life back and I intend to get it back. Here's hoping we all have dizzy free days.

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  41. My doctor told me that you can tell if it is working if you have problems with your balance after the injections.
    Hopefully the shots will work for you. There is a lot of folks that swear by them.
    Hang in there
    and stay in touch
    David

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  42. I have had MD for about three years now and it has become almost disabling. Two weeks ago I got my first Gent shot in my affected ear (right). I was fine until I got my second injection last week and my balance went crazy, and the sickness was unreal. I am finally getting settled back down, but the balance is still an issue. My doctor told me that my left ear would have to learn to compensate for the right ear. I also had tinnitus and the shot does not seem to work for it, but I am keeping my fingers crossed that my MD attacks will be mild to non existant.

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  43. D. Brewer

    Hopefully after a while your balance will recover and the vertigo attacks will be gone at least for awhile. You have to give it some time though. The tinnitus is another story I don’t think that the gent injections help with that.
    Stay in touch and let us know how you are doing
    David

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  44. Hi,
    My husband has just had his second gent injection and grommet on 1st july 2010. He is as present feeling awful, swaying, feeling drunk, head swimming, tinnitus, sick. He drives for a living and is currently unable to do his job. Hoping things will start to look up again soon. Good luck and best wishes to all of you on here. x

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  45. I hope that things will get better for your husband too. Give it some time all the dizziness that he is feeling might just be the gent doing its job.
    good luck and stay in touch
    David

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  46. I had MD from 1976-1995 undiagosed and only 1 or 2 attacks a year. 1995 hell began. I saw 9 Ent/OTOs with no mention of gent shots or surgery. 2007 first gent shot, walked like a drunk sailor for 3 months BUT stopped all vomiting to this day. I had my 4th gent shot May 17, 2010...I only seem to get 9 months out of each one and it does take a few months to get back to some normalcy after each one. Latest one...bad...ear drained for 10 days (never before) vertigo for 10 weeks afterwards. I have been an invalid for 15 years on and off...demanding the nerve section surgery next. Tammy

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  47. Tammy,
    You have really had it rough with MD. I know the gent injections were rough on my balance as well.
    I hope things get better after the surgery, keep in touch and let us know if it was successful.
    David

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  48. Hi,
    My hubby is still no better and has today informed his transport manager that he feels unsafe to drive. They have now put him on the sick until this feeling of being drunk has passed.....how long will that take? he had the op on the 1st july. He doesn't get sick pay so we are in for a worrying ride! x

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  49. Hi Sara,
    It is really hard to say how long it takes before your balance becomes adjusted after the gent injections. It took a long time for me. Sorry I couldn't be more help
    David

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  50. Tammy, how is your hearing in the affected ear? There's a much less invasive/risky procedure than the nerve section, but it has the severe disadvantage of destroying your hearing on that side. I have a friend who had the nerve section, and she says it took a year for her to feel normal again, plus she lost her hearing in that ear completely in less than a year after the surgery, even though the nerve section is supposed to preserve your hearing.
    The surgery I'm considering is labyrinthectomy, which drills out the semi-circular canals to expose the vestibular nerve, then removes the nerve completely. This is not as hard on your body as the nerve section. Fewer complications, shorter recovery time. It's worth asking your doctor about.

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  51. Hi,I was became unwell with MD sixteen months ago and had one severe attack after another and I am allergic to anti-nausea drugs and have been hospitalised four times, and off work for 12 months. I have had two gent injections and still suffer mild attacks and severe imbalance problems. I have been doing exercises with vistibular balance physio, but unfortunately not much improvement. I am back at work and just hanging in there. When I talk to my doctor he said that I may suffer permanent imbalance problems. What do you think.

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  52. Hi Sharon,
    After my first round of gent injections I had VR therapy and it did help a little. Eventually my balance recovered after that round. I had my second set of injections this summer and my balance still hasn't recovered fully. I hope it isn't permanent.
    I'm not a doctor so I can't say whether your balance problems are permanent but if I were you I would get at least another opinion.

    stay in touch and let us know how things are going
    David

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  53. Hi David, I've been dealing with MD for MANY years not....2 years ago I took 40 to 50 attacks in a couple of weeks....My doctor started me off on low shots of gent.....and because my attacks kept up,finally he gave me the high dose of gent....I've been 2 years free of attacks,but still have the feeling that I may take one....I just 4 days ago got another gent shot and I'm sitting here waiting for my balance to go out again....lol....Believe me I would rather have the shot than have the attacks.....Short term pain for long term gain......Somethings my doctor told me I'm not sure you know....1 MD, you WILL grow out of it....The more you have the attacks the more your balance is thrown out.....Your balance can only be thrown out so far...2 The gent shot is given to destroy the dark cells that produce the fluid which causes the attacks....3 After you get the gent shot in 1 year the cells can grow back....Not sure if you knew these things but they may help you or someone else better understand what's going on....Knowledge is POWER....Like yourself the gent shot did wonders for me.....I'm hoping I'm near the end of my battle.....It's nice to know that there IS an end to this....Michelle

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  54. Hi Michelle,
    Unfortunately I am still having problems after the second set of gent injections. Hopefully you will have more luck than I will with them.
    David

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  55. Are you taking low dose or high dose shots.....It wasn't until I took the high dose that it did any good....Actually maybe I'm just having a good couple of days,but lately I've been feeling great.... Hopefully the last injection did the trick....I'll keep you up to date.....Michelle

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  56. I took the high doses, I think I'm not sure.
    David

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  57. I was diagnosed with MD this summer after suffering since last April. It is a continuous feeling that never seems to go away and I have had several drop attacks. I had 1 gentamiacin injection on Sept 13. Still feeling not so great. I was told in a couple of weeks I would start feeling better. The doctor also said that I would only need 1 injection after he did vestibular testing after the injection a couple of weeks later. I am just wondering how long it takes before you start to feel anything good? Please help! Heather

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  58. Hi Heather,
    In my case it took awhile for my balance became adjusted. It was probably around 3 or 4 months.
    I hope everything works out
    stay in touch
    David

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  59. Hi David
    I leave in Italy and I suffer with MD for about 27 years but it was diagnosed only 3 years ago. Before I had only 2/3 attacks per year and after them it became quite fine. From last December attacks became more frequently but worst I have ever problems with my balance. At present I take duretic and Sulodexide with very few benefit. My doctor says I could try to get gen shot but I'm not sure to get it. I listened many people got gen shot without any benfits. Do you think it depend from doctor's capacity too.
    Guido

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  60. Hi Guido,
    A lot of people have found that having gent injections have improved their condition. If your doctor recommends it you might want to have the shots.
    I can only speak from personal experience because I'm not a doctor.
    good luck and stay in touch
    David

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  61. Last week I had a VNG test which revealed 34% loss of the balance function in my left ear. My doctor suggested shunt surgery or gentamicin injections. I'm going to see a surgeon who performs these on Friday. Attacks have not been a major problem for me in that I average about one a year with the last one occurring in the summer of 2009. I would like to get rid of the constant dizziness (and the accompanying spacey fatigue) but it sounds from others here that these two procedures really don't take care of that?

    Any suggestions/insight would be appreciated.
    Thanks,
    Peter

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  62. Hi Peter,
    In my own case the gent injections helped at first with my attacks, although my balance was bad for a long time.
    It never hurts to get another doctor's opinion if you are worried that the procedures wouldn't help your dizziness.
    good luck and stay in touch
    David

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  63. Hi to you all, I just checked out the side effects of Gentamicin and they are just as scary as the disease, but if the shot works for you that's great,

    Side effects

    These aminoglycosides are toxic to the sensory cells of the ear, but they vary greatly in their relative effects on hearing versus balance. Gentamicin is a vestibulotoxin, and can cause permanent loss of equilibrioception, caused by damage to the vestibular apparatus of the inner ear, usually if taken at high doses or for prolonged periods of time, but there are well documented cases in which gentamicin completely destroyed the vestibular apparatus after three to five days.[citation needed] A small number of affected individuals have a normally harmless mutation in their mitochondrial RNA (m1555 A>G), that allows the gentamicin to affect their cells. The cells of the ear are particularly sensitive to this, sometimes causing complete hearing loss[3]. However, gentamicin is sometimes used intentionally for this purpose in severe Ménière's disease, to disable the vestibular apparatus.

    Gentamicin can also be highly nephrotoxic, particularly if multiple doses accumulate over a course of treatment. For this reason gentamicin is usually dosed by body weight. Various formulae exist for calculating gentamicin dosage. Also trough and peak serum levels of gentamicin are monitored during treatment, generally before and after the third dose is infused.

    Gentamicin, like other aminoglycosides, causes nephrotoxicity by inhibiting protein synthesis in renal cells. This mechanism specifically causes necrosis of cells in the proximal tubule, resulting in acute tubular necrosis which can lead to acute renal failure.[4]

    Side effects of gentamicin toxicity vary from patient to patient. Side effects may become apparent shortly after or up to months after gentamicin is administered. Symptoms of gentamicin toxicity include:

    * Balance difficulty
    * Bouncing, unsteady vision
    * Ringing in the ears
    * Difficulty multi-tasking, particularly when standing

    Psychiatric symptoms related to gentamicin can occur. These include anorexia, confusion, depression, disorientation and visual hallucinations. [5] Immediate professional help should be sought if any of these symptoms or others appear after administration of aminoglycosides. General medical practitioners should refer patients with such symptoms to an otolaryngologist, commonly known as an 'ear, nose, and throat doctor', for comprehensive tests.

    Many medical practitioners freely administer gentamicin as an antibiotic without advising patients of the severe and permanent potential ramifications of its use.

    Good luck to you's all

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  64. Thanks Paul for the gent information. I will address the issue in an upcoming post
    David

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  65. HI David

    I am based in the UK. I have a consultant who suggested intra-typanic steroid injections (into the inner ear) instead of going to gentamicin first. Same procedure, different drug. The difference is that they don't cause any permanent damage or hearing loss, so if they don't work for you, you haven't lost anything.
    I suffered a couple of huge attacks post the procedure, however nearly 4 months later I have been attack free for 3 months.

    I don't think I am cured, but at least I have had a significant period of remission from menieres.

    This is a (relatively) new treatment and I guess it depends whether your consultant thinks it helps to whether it would be offered to you. I know that not all UK based consultants would offer this treatment and I also know it doesn't work for everyone.

    I am one of those people that SERC doesn't work for and neither does a low-salt diet, so it was ratehr wonderful to find something that seemed to make an improvement. I just hope it keeps on working!

    kind regards

    Sophia

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  66. hi Sophia,
    Im glad that the steroids are working for you, I have also heard others say that it works for them also.
    Thanks for the comment and let us know how you are doing.
    David

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  67. I was diagnosed with MD about 2 years ago. I started having vertigo attacks about every other day in May. They would last from 2-18 hours. I opted for the gent shot in Oct. It was the low dose shot.
    I was fine the day after the shot. Then on the third day everything went haywire. I don't remember anything for the next 3-4 days. My husband had to help me out of bed to get the the bathroom. He said it was horrible to watch.
    I then progressed to being able to walk around the house with some help. I can now walk around with no help but still stumble a good bit. When we go outside the house, I again can not walk by myself.
    My ENT told me the gentamicin did too much damage. HE said I have the symptoms of someone that the severed the vestibular nerve. It has been about a month and a half since the injection.
    I go from feeling okay to I can't walk without help in the span of 5 hours. Not sure if this is normal and neither is my ENT.
    He said he will not do any more gent shots. He does not think I will have any more attacks from the right ear.
    I had already lost a good bit of hearing in this ear. THe gent shot did a little more damage to the hearing.
    Dr is saying 3-6 mths for recovery. I go back the beginning of Dec and we will then discuss Vestibular therapy. RIght now I get way too sick with any head movements.
    Driving has been out of the question since May. I was afraid of having an attack while driving and now I just can't move my head to drive properly.

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  68. Hi Peg,
    I am so sorry to hear about your experience with the gent injections. this sounds like one of the worse cases that I have heard about! I have also had balance problems after the shots but nothing like what you have had.
    I hope the Vest. therapy works I had it a few years ago and it did help a little.
    hopefully things will get better soon.
    stay in touch and let us know how you are doing
    David

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  69. David,
    Thank you for your site and thoughts! What sort of work did they do in Vest therapy? I take it once your balance started to get better it continued on that path and did not have sets backs like I had?
    My ENT is not sure if this is due to my balance being off or if I am still having vertigo attacks.
    I don't know if this is related at all to how I reacted to the gents shots or not, but I thought I would put it out there for anyone considering gents injections.
    I have a low tolerance for alchohol and and prescription drugs. If someone says this will make you a little drowsy, I am out cold. My ENT said I evidently did not have the enzyme or enough of the enzyme to get the gentamicin out of my inner ear quickly. So I am now wandering if my low tolerance for other things should have been considered before the shot. I don't really know, but I don't want anyone to go through the reaction I went through

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  70. Hi Peg,
    Vestibular therapy that I had consisted of testing first then doing certain exercises to improve your balance. the testing wasn't that bad and it was safe so you didn't have to worry about falling down. the exercises weren't difficult but I think that they helped with my balance, of course with meniere's you never really know what helps.
    good luck and let us know how the vesitbular therapy is going
    David

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  71. Hello everyone. Never knew there was a resource of MD people like this. I have felt so isolated. My poor husband and I have muttled through all this vertigo craziness since 2006. I have just been recommended to have the Gen shot and I am petrified. The labryth episodes hit me out of no where and I am at their mercy... I have a young child and I am always paranoid as to when I will have an "episode". I have had every test known to Otolaryngology and I am on low sodium, low stress on triamterene (dieretic) and ativan. I have been on disability since June because of the double computer monitors at my job that I use 8 hours a day. They want to inject an ear that I don't have isolated symptoms in. I get fullness in both ears and my eyes are super sensitive sometimes to movement - Anyone relate? Also loud noises or even a TV can sound blarring. I am sooo confused. I am petrified about going backwards in the sense that if I have this shot and I am down for months with more frequent episodes!! Anxiety has set in, I am so confused. I am super sensitive to meds and when "normal" procedures are done on me something always is exceptionally different with my recovery. Example: Hysterectomy, "in and out, a couple days down time." I was in the hospital for 4 days and was having complications with all the pain meds they tried.
    Sorry to babble, I have yet to meet an MD patient, thank you for all your comments to previous blogs, I read them all.
    Peace to you,
    Wendy

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  72. Hi Wendy,
    I have also been on disability awhile, and my work was working in front of a monitor too, which can really bring on a meniere's attack.
    Good luck with the gent injections if you decide to go that route it helps some folks but not everyone.
    Eve movement can bring on attacks in my case also as well as sudden noises.
    thanks for the comment and stay in touch
    David

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  73. My sister has experienced relief with the injections, but recently has had depth of perception and vision jumpiness. My initial research seemed to point to This adverse event only in patients with renal issues. I am interested in any feedback if someone is dealing with it, or any suggestions on treatment options.

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  74. hi,
    I hadn't heard of that but i would be interested to find out. my vision was jumpy after the injections also.
    thanks for the comment
    David

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  75. Has anyone had a labyrinthectomy? If so, what were the results and what was recovery like? What is the typical time frame for recovery?

    Thanks

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  76. Hi,
    Look at the post http://www.mylifeandmenieresdisease.com/2009/05/labyrinthectomy-and-menieres-disease.html and you will see quite a few responses
    thanks
    David

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  77. I have now had three gent injections. It took almost 8 weeks to get over each one and then was fairly good for a year. The worst seems to start for me two to three weeks after the injection. It does make you depressed when there is a good day or two and then it hits again. Dr. Barrs at Mayo Clinic in Phoenix is very good.

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  78. Hello eveyone:

    I had my first gent injection on 11/29/10. My doctor told me in 3 to 5 days I would begin to feel an imbalance. On day 3 it started and now 5 days later it persists and seems to be worsening. I plan on refusing my 2nd treatment which is scheduled for 12/10. Can anyone tell me how long this imbalance/dizziness lasts? My head feels like it's swinging and swaying and I find myself getting depressed. My doc did not tell me to plan to take any time off from work; rather he informed me he was not going to limit my duties since the injections effect everyone differently.

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  79. @Gerri,
    Are you planning to get more gent injections?
    stay in touch and let us know
    David

    @anonymous
    It took several months after the first series of injections to get my balance back. but you have to remember that it affects people differently.
    stay in touch
    and let us know how you are doing
    Daivd

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  80. I had my first gent injection on November 30th. Four days later, on December 4th, I had a vertigo attack. I had another attack on the 5th, and again, today, on the 6th, I had a vertigo attack. Is this normal to experience an increase in vertigo attacks after an injection has been given. If so, when do they typically subside?

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  81. With a lot of people there are attacks right after the gent shots. Some say that the attacks should end after the last gent injections. unfortunately they didn't for me.
    David

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  82. I have had Meniere's for almost 4 years now. I started treatment with the usual low salt and diuretics. My episodes became much worse 8 months ago and saw two other specialists. One told me that a labrinthectomy would be my best option. I now have a new physician who believes that the herpes virus is responsible for Meniere's. He put me on 1 gram of Valtrex three times a day for two months and then gave me a series of steroid injections every other day for a week. This helped with my loudness sensitivity but I was still getting attacks every week or so. I have lost 10 pounds from vomiting and got down to a weight of 95.I have only 20 percent of hearing in my left ear. My Dr. offered me Gent injections which I just had two weeks ago. The injection was uncomfortable but not horrible. For the first day I just had an earache. The next two days I felt a little off balance but then felt pretty good with no vertigo attacks. Twelve days after the injection I started having pretty severe balance issues. Hard to walk around without holding onto walls and have very jumpy eyes. I think that it is so hard to compare yourself to others because everyone has their own experiences. I feel the more activities you able to do safely, the better.I will keep you posted as to when my balance returns. In the mean time, eat well, sleep well, and do as much for yourself that you can. I will win this! I know it is hard to stay positive. I wish everyone well. Keep fighting :)

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  83. Hi,
    thanks for the comment. It seems that it is difficult to predict how the gent injection affer effects will be and how rough they will be. One doctor told me that the difficult time afterward was a sign the shots were working. If that was the case my shots really worked well!
    Stay in touch and keep that good attitude and you will beat this
    thanks
    David

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  84. I am doing my 3rd round of Gent treatments tomorrow. First one was one injection, Sick for months (after the first week). then better. the second was the "high dose" method a year later when the vertigo came back. Tomorrow I am opting for another high dose regimen. I will probably do a labryinthectomy in a year if it comes back again.

    I have noticed a HUGE difference and the vertigo comes back less everytime.

    SO many people it seems are alone on this one. Hang in there. I have been doing physical therapy for a while and that helps quite a bit.

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  85. Hi Darkwingedfae
    thanks for the comment I hope that your 3rd round will do the trick. I stopped after 2 rounds because I just didn't think it was helping me that much. But with meniere's some treatments work with some people and not with others.
    stay in touch and let us know how you are doing
    David

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  86. Hi Wes Peterson,
    I've had MD for 20+yrs. It all started at the age of 12 with clueless doctors. Only one drop attack per year I learned to deal with it. Then nothing, Burned out for ten years.
    Now it's back, same ear, but dizzy everyday and vertigo once a week. My hearing is toast in the md ear. So I'm thinking of killing the ear off which I'm hoping will fix it.once and for all...

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  87. that is one of the strange things about meniere's is that it can come back even after a long period of no attacks
    thanks for the comment
    David

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  88. Hi David,

    Thanks for this blog. I had MD since Aug 2003. I haven't had any single attack from 2004 till 2009. However during mid2010, clusters happened again till now. I had to do series of tests and confirmed that almost 90% of my left ear balance function is lost. my doctor suggest gent treatment for the residual balance. he claimed 90% of his patients did not experience vertigo after the treatment. Sorry if I haven't read all comments above perhaps this is already answered, he said there is a period of wobbliness but no more vertigo? how true is this statement? thanks for the advise.

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  89. Everybody is different but I still have problems with vertigo and balance even after all the gent injections.
    thanks for comment and stay in touch
    David

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  90. I have had MD for about twelve years. I had a sacuss decompression operation eight years ago which has up to now keeped me vertigo free. About two months ago I had a really bad vertigo attack. I have just had my first gent injection two weeks ago. my consultant will only go very slowly with this treatment. he will retest for anymore hearing damage and how much balance is still left on my left side before he gives me another injection. I am just starting to feel off balance and my eyes are jumpy.my consultant said that this reaction should only last a few days. I am trying to stay positive.

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  91. thanks for the comment and I hope that the gent injections help you
    stay in touch
    David

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  92. I'm supposed to have my first injections tomorrow. As I am reading through post on here and other sites I'm starting to have second thoughts. I have been off work for about 3 weeks this time. The first week I was having severe attacks everyday. The second week it was almost every other day. This week I have not had any severe attacks but I am still dizzy most days for at least part of the day. From what I read it seems a lot of people are off balance for months and months after the injections. I'm wondering if I should wait another week or so and see if it subsides some on it's own. I'm scared to get it and it be worse....I cant afford to be off work for 3-6 months or more. However, I am super tired of being dizzy and living like this. Seems like it's a no win situation. I guess I'm not really asking a question just looking for opinions ......by people that understand what I'm going through.........

    Tara
    taray@aol.com
    dizzydays.weebly.com

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  93. Tara, the way the gentamicin works is cumulative, although the threshold is different for every patient. When I had the shots, I needed a lot of them for it to really take effect, and when it finally kicked in, I felt awful for several days. It was as if I was having a bad Meniere's attack, and I could barely walk straight. But for me, those few days were the only effect I felt. After the first few days were past, I was able to get around much better and started physical therapy to achieve better balance and control of my vision. I did a program of vestibular rehab for a couple of months.

    In my case, the gentamicin shots were not enough, and after a few months I decided to have the surgery to sever my vestibular nerve. Even following that, I found I was not terribly dizzy. It took some time to adjust, but it wasn't a situation of being off balance for months on end.

    Although I have to stress that everyone's Meniere's Disease experience is unique, I can at least tell you that I did not have a terrible reaction to the shots. I was also very fearful of them, but the reality wasn't as bad as I anticipated. Good luck!

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  94. hi david, just having a second thought on having gents. i feel it is still a gamble. my doc said there will be period of wobbliness. How long is that period? and what is the usual degree of wobbliness? can i still drive/work during those days? what could be the worst-case scenario of having gents done (aside from not fixing vertigo attacks) based on what you have heard so far? thanks david for advise.

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  95. Hi,
    although my experience with gent injections wasn't good there are other folks who have found them helpful. I'm not a doctor so I can't really advise you one way or the other.
    David

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  96. I doubt even a doctor can tell you for sure what will happen with gentamicin injections. It seems to affect people very differently. I wasn't able to drive for about a week after the shots really took full effect and the "wobblies" set in, but after that I was able to get around locally. I just had to be careful about looking over my shoulder and then turning my head back front, and I avoided highways (and still do).

    It IS a gamble; but so is living with the attacks. You need to make your choice based on what your life with Meniere's is like. That's what settled it for me. The attacks were so awful I would have done anything to stop them, so even though I was scared silly about the shots, it couldn't be worse than what I was going through, and it might help.

    Ask your doctor what the worst-case scenario would be, in their opinion. And then think through the possible benefits and problems and how you might deal with that.

    I'm sorry, no one can give you an easy answer. :(

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  97. Hi all,

    My hubby is still unable to work following his last gent shot last July. He is wobbly daily and has jumpy vision. He still gets episodes of menieres attacks too. The doctor/consultant is now saying it may not be menieres and that he may have been mis diagnosed and wrongly treated for a condition he may not have had..........if this is the case then it is the gent shots that were wrongly given that have caused his disability.We are off to Bristol tomorrow for further tests, i'll write again soon.

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  98. I hope that they didn't misdiagnose your husband and give him the gent injections for nothing.
    Let us know how it worked out
    David

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  99. I am thankful and amazed at this site and the ongoing postings, thanks to everyone for sharing their stories. I am over 3 years living with diagnosed MD and have had many of the same experiences. I have tried 2 failed decompression surgeries and more severe and often attacks. I feel blessed to not have them daily as others. I had my first gent inj in Feb I tolerate the injs well since I had several steriod perfusions I knew what to expect. If you can live through just one vertigo episode this is mild in comparison yet uncomfortable. The first week I was dizzy and had a severe episode. My dr informed me this what to be expected as the nerve tries to grow back thus the ongoing symptoms. About a month later I felt great better than I had in years still wobbly I went infor another inj 3 weeks ago and still feel crummy but not severely sick. Everyone responds differently and I often joke that Drs practice medicine because this sure feels like someone is practicing on me! Keep your sesne of humor thank your loved ones and enjoy the days or moments you feel well.

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  100. Thank you for this site and all the info! I had my first gent injection almost two weeks ago. After one vertigo episode that night, I had three whole days of normalcy! Wow! Then the bottom fell out, and as most have commented, I am now totally off balance all the time, feeling like a drunken sailor! I was forewarned about the medicine making me feel dizzy, but certainly not told how severe it might be. Nor for how long. Also my vision has been affected--bumps around when I walk, and difficulty focusing. Glad to learn this all goes along with what others have experienced. Seriously debating about whether or not to get a second injection. Certainly will have more to discuss with my ENT doctor before making a decision. Thank you all again for the input... My heart goes out to those who have children to care for, and families to provide for!

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  101. Hi Anne,
    I know that the gent injections can do a number on you (they did on me). I would definity have a talk with your ENT for some guidance.
    Stay in touch and let us know how things are going.
    David

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  102. Anne, that reaction is to be expected as your other vestibular nerve learns to compensate for what's happening in your Meniere's ear. Talk to your doctor about it, but don't give up. This might be the only shot you need. I know that feeling is very frightening, but it will pass, and your body will learn how to overcome it.

    I think it's a pity doctors don't explain more carefully to their Meniere's patients what will happen and what it means. A lot of anxiety could be avoided.

    If you find you are continuing to be dizzy, don't panic. You can try vestibular rehabilitation therapy to help your system adjust more quickly. But definitely call your doctor and ask a lot of questions.

    Good luck.

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  103. Hi All,
    Well the results from my husbands tests in Bristol were in conclusive and the specialist says that it may or not be menieres he really isnt sure!!! He has now offered my hubby a lymphatic sac drainage operation to see if that will help.........any ideas???
    Regards
    Sara

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  104. Hi Sara,
    I would definitely get another doctor's opinion. Even if it isn't meniere's the important thing is to get help.
    David

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  105. Sara,
    I would recommend a second opinion, too. If the doctor isn't sure, it seems a tad extreme to offer a minor surgery as the first response. Have other treatments been tried? Usually they try such medications as diuretics, cortico-steroids and anti-seizure/anti-nausea first.

    Try another ear/nose/throat doctor, maybe more than one. Good luck!

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  106. Hey I'm glad this web site is available to use it has helped me to cope with my meniere's disease by knowing there are other going through what I am. I recently had my first low dose gentimican shot in my right ear and now seven days later I can't even stand up on my own can some one tell me how long it should last before its back to just feeling like I'm on a boat. I can't stand just rating here all day. I have already had the shut operation and it only lasted one month before my attacks came back. These shots seemed to be my next best option but this losing my balance is awful.

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  107. Hi Jeremy,
    It seems that the gent injections affects everyone differently. In my case I had a terrible reaction about a month after my last shot. And it was bad.
    thanks for the comment and stay in touch and let us know how things are going.
    David

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  108. Jeremy, hang in there. The effects will become less severe, although it's awful while it lasts. Different people seem to have very different experiences as to how long the reaction to the gentamicin lasts and how bad they feel, but it WILL get better.

    When I had the shots, I remember going for walks and freaking out because the trees and houses appeared to be jumping up and down. But over time my other vestibular nerve compensated for the most part, and although I'm chronically dizzy now, it's still far better than it was right after the shots.

    It's a process. Hope you're feeling better soon.

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  109. Try looking into the MicriWik procedure

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  110. Anonymous, is that a typo? There's no such thing, according to Google. Do you mean MicroWiki? And if so, why?

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  111. Never mind, I found it... it's MicroWick, which looks like a candle wick inserted through a tube in the eardrum to distribute gentamicin into the inner ear. It could be a less painful way of administering the gentamicin, but I wonder if it would still bother David. The drug itself used to really hurt my inner ear sometimes.

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  112. I think it would still be painful...

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  113. Yes, I suspect it might. But remember what I did: I warmed up the gentamicin before I injected it. I would put it under my arm or sit on it until it came to room temperature. That helped a lot.

    David, I have a concern I'd like to open for discussion, but I don't know where to put it. I'm afraid I'm starting to go bi-lateral. I've noticed in recent weeks that my right ear, which was previously unaffected, has started ringing. I'm very frightened about this. Mind you, it would really increase my chances of getting SSD, but still... I don't want to lose all of my hearing and balance. But I'm not sure what to look for. I'll make an appointment to see my ENT specialist, but I had to get through a weekend now before I can call them.

    For those who have bi-lateral MD, how did you first realize it was affecting both ears??

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  114. Hi Peggy,
    I will pose the question on sunday's post
    thanks
    David

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  115. I've had meniere's for about 14 years, sometimes with remissions for many years. Came back with severe attacks at end of 2007, and continued until July 2009, when I began a 20-month remission that finished in early March this year, and episodes are now almost daily, and sometimes more than one a day. However the individual episodes are less severe than during the 2007-09 ones. Have to lie down for 15 to 60 minutes, then I come good.

    My left ear hearing is 80%+ gone and my otarynthologist is going to start gentamycin injections in August after he returns from an absence during July. I'm actually prepared to have a labyrinthectomy as I don't have a problem with losing the small residual hearing in my left ear. I'm retired but have been leading an active life, so this condition is very disabling to me.

    I don't know whether to feel encouraged by what I've read in this blog or not. I live in Sydney Australia.

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  116. Whyisitso, I don't think you should be DIScouraged by what you read in this blog. Admittedly, a lot of what you will read here is the worst-case scenario, because the people who have had the worst experiences are the ones who need a blog like this the most, to share ideas and get feedback from others who have had similar experiences.

    But I find it encouraging to read the posts of people who have been through similar problems and found solutions, or are living their lives regardless of MD. To me, the moral support of the folks who post here is important, and the knowledge that someone else out there knows what I'm going through and has ideas about how to cope with it.

    I had a very similar situation to yours; similar hearing loss in my left ear, similar frequency of episodes, and gentamicin treatments. I did have the labyrinthectomy last October. I had one bad episode in November, but since then have not had the extreme vertigo and nausea. My life is not back to normal by any stretch of the imagination, but the surgery was a good choice, because I don't have that extreme daily suffering of the attacks.

    It's a process, unfortunately.

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  117. Having my first Gent injection tonight...little worried about it but I am pragmatic and know my experience will be different from others. Been having quite severe attacks for the last year or so to the point now where they are every other week. I get over the after affect of that drunk feeling pretty quickly so hope I won't feel too bad for too long. I just want to k ow that I can take car of my son and won't be out of action for like 24 hours. I also have a pretty good job and don't want to be sidelined when I am making good career progress! I have scheduled a week after today to see how I get on. Will post after the fact and let you all know how it is going.

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  118. So, the injection hurt like hell! But I am confident I did the right thing, my wife is being awesome and I feel pretty good today. Know later in the week I may feel worse, but we will see!

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  119. Good luck! and let us know how you are doing
    David

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  120. Week and a half on from the injection...had a couple of attacks and sometimes feel a little unsteady but other than that, think my ear feels less pressure. Early days still I guess!

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  121. hang in there hopefully this is a good sign
    David

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  122. I had my first gent injection six months ago. Because I reacted so severely to it, my doctor wanted to wait and see if my vertigo returned before doing a second injection. After six months, vertigo did return, so I had a 2nd injection done. The second injection was done 5 weeks ago. I am now so dizzy all the time. Head movements are awful; it appears like things are moving/jumping around on me. How long, on average, should a person expect to feel this way? When do the dizzy and "jumping around of objects" symptoms subside?

    Thanks for this site. It helps to know that I am not alone in going through this!

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  123. wow, I don't know if I am glad I read this blog or not, but think I am. I've been dealing with MD for just a little over a year. Specialist I am seeing gave me some options, and I elected to go with the Gent injection as he has had a 90% success rate with it, usually with one shot. He said he could do it on the spot. I had first injection 7/25, and was told to expect a vertigo attack the next day. that did not happen, but 4 days later I had a severe vertigo attack. Called ENT, and he said it was unusual for it to happen 4 days later, but did mean the medicine was working. I have since had vertigo attacks 3 of the last 5 days, and doc told me to move my appt up (scheduled to go back 8/29/11) and we would talk about 2nd injection or labyrintectomy. I was told with gent shot wouldl have some balance issues, but should not have anymore vertigo - wrong on that one. Balance is only really bad when having vertigo attack. haven't driven much in months because my attacks were so bad. I did not realize gent was cumulative, and this scares me a bit. Guess I need to do a bit more research. I have no life now, don't see how it could get worse, but maybe it could. I have been decline first round for SS disability, obviously they don't know what life with Meniere's is like. Hopefully I'll get approved as certainly cannot work like this. Feel badly because I am supposed to be taking care of my 83 year old mother, and she is taking care of me. I too need to do some more reading on lab surgery. Is that what you ultimately had David? And did it work for you?

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  124. Hi,
    I never had the laby surgery and I am really glad about that from all that I have read and heard about from other folks. I did have the gent injections, 6 of them, I really don't think that they did any good either.

    driving is a real problem for me as well, I limit my drives to places close to my house always carrying my cell ph. with me and charged. (the phone is a life saver)

    I also got turned down the first time on Social sec. I have a lawyer now so hopefully that will help.

    Good luck and stay in touch
    David

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  125. I actually AM glad I had the labyrinthectomy, and here's why:

    I needed eight or nine gentamicin injections to get any real effect, and even then, the vestibular nerve regrew. I did go back to vertigo and nausea following the gentamicin therapy, and I feel it was basically a waste of time.

    I had the laby surgery last October, and I had one really bad attack of vertigo with vomiting in November. But since then, I'm dealing with chronic dizziness and occasional mild vertigo, one episode of minor vomiting (threw up once, and that was it)... no more full-fledged attacks as yet. I'm aware it could start again, and am on the lookout for it.

    However, this life is hands down an improvement over having attacks several times a week. I can't work, but I'm mostly OK in the house. I can't drive far, but I can take myself to the doctor or to see friends locally. It's a trade-off, I guess.

    Regarding the awful aftermath of the gentamicin, I know exactly what you mean about everything jumping around, and I'm afraid there's no easy answer to how long that will last. For the first few weeks, I was miserable. But it did start to diminish, and now my vision doesn't jump around much at all. It's been more than a year, but I couldn't really tell you when I started feeling much better. Stay strong -- it will pass, but probably so gradually you won't really notice when it stops completely.

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  126. Well, I am a little bit better now, though woke up this AM with terrible double vision - weird, went back to sleep, and it was much better when I woke up. today is the first day since injection I've felt any better, but still having dizziness as the day progressed, and weirdly vertigo type feeling when I close my eyes. I still don't think I dare drive. If even laby doesn't totally make the vertigo go away, this is really discouraging. I need to be able to at least drive to doctor and other local places. I am still wondering if this is a correct diagnosis, though all symptoms seem to fit. I just can't imagine living like this for forever. I need to be able to travel to see my family, and this doesn't seem likely at this point. I've read that sometimes Meniere's burns itself out - but wonder about that.

    Thanks for your stories, and I will keep in touch. Dreading next appt as I'm sure he'll want to do 2nd injection and it is 5 days before grandkids come to visit for my birthday. I guess it is ultimately my decision.

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  127. I'm glad I'm reading about this. My Dr. recommended the Gent injections if I get any worse. In March, I had the surgery were he shaves off part of my mastoid bone in order for the swelling to have room to go. He said it was 75% effective. I was doing great for two months until I had to have half of my thyroid removed. I still have not had any more episodes, but I'm back to feeling pressure and ringing like before. I'm just praying that as my thyroid gets better, so will my ear. I'm back to exercising and looking at the salt and sugar content I eat and I'm hopeful this will put me into remission. I'm 27 and I am a stay-at-home mom, so If I cant do my job, my husband has to take time off. I really cannot afford to be laid up by dizziness for months (I know non of us can). For now I occasionally take 1/2 of a vallium if the pressure gets me thinking I might have an episode. I also get steroid injections that sound a lot like the Gent. injections and those work for about 24 hrs. I feel like I can live with the pressure and ringing if that's as bad as its going to get, but there is no way of knowing.
    For now, I'm just taking it day by day. I think what I'm most tired of is thinking and worrying about weather or not i might have an episode that day.

    I do not want this disease to define me. I'm praying this will be the worst of it.

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  128. Tara, I can't tell you how many times I've had that same thought, that I don't want Meniere's to define me. It's a struggle, but I think it's one we have to make, to maintain our lives despite this problem.

    David, have you discussed Meniere's burnout on this blog before? I haven't seen the topic come up that I can recall, but it's something I'm wondering about, too. Is there, in fact, life after Meniere's?

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  129. Peggy,
    that is good point, I think there is but I'll have to check
    David

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  130. Thanks for the blog. How many gentamiacin injections can I have? I had one in May 2010, worked for 10 months and again March 2011. That worked until now. Can IU keep going back for injections? Thanbks, JJ

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  131. My Dr. has been giving me steroid shots in my ear and gave me a 2 week prescription for strong oral steroids. If I don't go into somewhat of a remission after this, then he strongly recommends the gentamiacin injections. I'm ok with doing that, however, I have heard that there are bad side affects with it, like being off balance, sick and non functional for a long period of time. I'm a stay-at-home mom, and cannot afford to be laid up for months. Has anyone had a good experience with the injections?

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  132. Oh, I should probably add that I have only had one minor episode at night since my sack surgery in March, other then that I feel fullness and rining, which I know if the fullness doesn't go away, it is inevitable that I start having episodes. However, since I am not having constant episodes right now, should i just wait to get the injections or just wait until they start up again? My Dr. wants to do them now to prevent more hearing loss, but again, Im scared of being non-functional. Thanks

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  133. hello tara
    i am having my first stlroid injections in septemeber,
    did it hurt?
    did they keep you in for the night?
    please look into allergies gluten and histamines etc.
    ali

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  134. Tara, in my experience, you won't be "laid up," but you will have balance problems and some nausea in the days immediately following the gentamicin shots. When I had the last shot, the one that pushed the vestibular nerve over the edge, so to speak, I felt like I was having bad vertigo and nausea attacks for several days. I could walk, but needed to put a hand on the wall to guide myself in a straight line.

    Then it began to taper off, getting better little by little. I was never bed-ridden, though. I could function, although I think a mother of young children would need some help for a week or so. That said, please note that it varies some from person to person.

    JJ, I would ask your doctor how many gentamicin shots you can have. I had a total of nine, I think. It's an antibiotic, and since it's injected straight into the ear, it doesn't impact the rest of the body as far as I know.

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  135. Well, it has now been over three weeks since gent injection #1, and I am finally feeling somewhat better. Eye problems, unsteadiness, have improved, but I still cannot stand for any extended period of time w/o feeling wobbly. I went almost two whole weeks with no vertigo, but last week I had a minor vertigo attack, and then two today. They were both very short lived - maybe 5-10 minutes - unlike prior attacks before that lasted for hours. I am scheduled to return to doc on the 29th, less than a week away, and am thinking I'll okay second gent injection, but I am terrified of having a reaction as bad as the first time. Have those of you have had repeat injections pretty much had the same type of reaction each time? I so want this gone! I too wish the doc had told me more what to expect. Reading this blog is so helpful, and it is good to see other people who have had the sane type of reactions to gent injections. I was only told that I would have the on bad vertigo attack, and that would be it. Then I might have a little problem with balance on uneven sidewalks. The specialist I see is supposed to be one of the best, but he told me nothing about how bad the side effects would be. Help please on reaction to follow up injections.

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  136. I don't think anyone can prepare you for how bad the reaction is the first time your vestibular nerve is knocked out by the gentamicin, Cindy. But I noticed that it's not nearly as bad with subsequent injections. In fact, I was very worried about having the labyrinthectomy surgery because my doctor said the amount of time I had to spend in the hospital depended on "how soon I stopped throwing up." I was very relieved that after the surgery, I didn't throw up even once. I was off-balance again, but not drastically.

    My point is that the reactions to the first effective gentamicin shot are the worst. After that, they aren't as extreme because the nerve is already very compromised. So I don't think you need to worry about that.

    Ali, the steroid shots in the eardrum are done as an in-office procedure, and you should be find to go home right away. You might have slight dizziness, so it's a good idea to have someone else drive you if you can do that. Those shots never hurt me, but I am pretty sure David experiences a lot of pain when he gets the shots in his eardrum. So I think it varies from person to person.

    For me, the secret was always to warm up the medication before it's injected. I used to hold the syringe in my hands for a few minutes to bring it to room temperature first, and that helped a lot. The gentamicin shots always hurt me more than the steroid ones.

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  137. Thank you Peggy. I guess Its a decision I'm just going to have to make.

    ALi, Like Peggy said, for me what hurt most with the steroid injections was the very first shot of numbing medicine. Then the steroid shot doesn't hurt as much. I have had those shots done several times in his office and the more I have it done, the less it hurts each time. He does it in his office and you will probably feel a little dizzy for a few seconds then it goes away. You will need to lay quietly for about 30 min. to get the medicine to sink in the ear, but after that, I was just fine to drive home. I felt immediate swelling, but that went away after about an hour then I felt relief. I hope that helps!

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  138. To everyone who's had the Gent. injections:
    When you were considering them, did the Doctor ever mention how long you might expect to be vertigo free after?
    Did they tell you off the bat that it acts as a neurotoxin, or did they just say it was an antibiotic?
    Thanks!

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  139. Okay, thanks Peggy for the encouragement on second gent injection. I have not had the steroid injections - doc said they were not usually as effective, but he did put on my list of choices and I opted for the gent as he said he's had best success rate with them. I really do dread the numbing med (phenol) more than the shot as the shot didn't hurt at all - slight pain in ear for a few days afterwards is all. I hope it works , if not, then I guess on to laby (maybe) - have to research that one a bit more.

    Thanks for being there all of you who have contributed - at least you can relate, which others cannot.

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  140. Lauri, I think everyone has a different experience with the gentamicin, in terms of how long you are vertigo-free. My doctor told me right off the bat that it was a neuro/ototoxin, and that the whole point of the exercise was to kill the vestibular nerve. She also said it was likely to reduce my hearing in that ear noticeably. I knew that it was an antibiotic, but that is beside the point when it comes to Meniere's.

    When I've had shots in the eardrum, the numbing agent is lidocaine (sp?). They use a syringe without the needle and just squish the lidocaine all over the eardrum. Then you wait 15 minutes for it to numb everything. That way, I don't feel the needle at all, only the medication entering the middle ear.

    Cindy, don't jump to the labyrinthectomy without a LOT of thought. You will lose just about all the hearing in that ear, so don't do it unless you are already almost deaf on that side. And read the labyrinthectomy thread to see how it was for me. (Too much to lay it all out here.) I think it was worth it, but it's a very personal decision with ramifications. Good luck!

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  141. So, my dad had a gent injection about 6 weeks ago. What a mistake! He can't drive his car, he is having trouble with his vision, thinking, he is practically not even able to take care of himself. He is 81 years old. He used to cut a 3 acre yard, walk 6 miles a day, drive anywhere he wanted to and now he is practically an invalid. Is there anything we can do to reverse this situation or improve the situation?

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  142. Diane, first I would recommend talking to his doctor. At 81, I would think it might take a bit longer for his body to recover on his own, but I'm not sure.

    One possibility to improve his situation might be vestibular rehab therapy, which is essentially physical therapy that has two goals.

    On the one hand, it works to improve the patient's balance with exercises designed to make the body adjust to its new situation (i.e., the lack of one vestibular nerve). The vestibular nerve in his good ear needs time to learn to take over your father's balance functions, and carefully supervised exercises can help with that.

    The second part of vestibular rehab is exercises for his eyes, which will help speed up the adjustment.

    His balance now is governed by only one ear plus his vision, for the most part, and he needs to get his body used to the changes. I hope he starts to feel better soon and is able to go back to functioning much better than he is now.

    Be patient and help him be proactive. Ask his doctor how long this should take, and whether s/he recommends vestibular rehab therapy. But do be patient... it can take awhile.

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  143. Daughter Diane~
    Was your Father given the Gent injection because he had Menieres Disease? Did he have any eyesight issues before the Gent?
    I know David had problems after his Gent injections that lasted quite awhile.
    Also...do you know if they gave him a full dose shot or the lesser?
    Lauri

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  144. I haven't read the enire blog, but has anyone had success with nystatin (antifungal) for Meniere's?
    Thanks, JJ

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  145. Off hand I'm not sure that I have ever heard of nystatin. I'll have to look it up
    thanks
    David

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  146. I read an older article by a Dr. Ralph Nelson supporting nystatin's use and the idea that Meniere's is an autoimmune disorder in the inner ear. However, there are other doctors who have printed scathing rebuttals of Nelson's theories. I'd say the jury is out on nystatin and the use of antifungals for Meniere's patients. JJ, did a doctor recommend it to you?

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  147. I'm a active (or was a very active) 37 yr old female. Had MD attacks since 1999...and they got worse in clusters in the last 4 months that have left me very ill and changed my life over night. Used to come every 6 months to a year...
    Just had my very first high-dose Gent injection 5 days ago. (going with the one high-dose choice instead of multiple low dose to help preserve my excellent hearing.
    I was very prepared for the 'big one' as my dr. told me I COULD have the worst attack of my life within 24-48 hrs as many patients do following the gent. Due to my recent 2 week hospitalization from multiple 'drop attacks' from my long undiagnosed MD...the dr. put me on high doses of round the clock Valium and Zofran to help reduce the chances of a bad attack AFTER THE GENT and is going to keep me well medicated for the next 7-10 days. (I typically have a very long recovery after my MD attacks, so I tend to be very fragile)
    My symptoms though...make me wonder if it even worked...is the valium and such medicine doing such a good job that i didn't get so sick? Why is my balance not going out very much? When will my balance get worse? I've had some wobbling...but seems to be nothing like what I'm reading on this blog. I have ear pain...which I assume is normal, headaches, and some minor dizziness. I guess I was expecting my balance to be horrible....since Dr. says most patients take 2-3 months before they feel NORMAL again. DID ANYONE ELSE OUT THERE TAKE GREAT MEDS TO HELP OUT AFTER THE GENT...AND DOES THE BALANCE GO OUT PRETTY BADLY? I feel the internet gives very, very little research of what to expect POST gent injections. I've been frustrated with the lack of information and even just 'what to expect'? I'm sure there are many 'normal' symptoms...but I cannot find anything beyond 'scientific' studies.
    I'm just scared I'm gonna have to play Russian Roulette to find out if this injection worked....but I wanna know so I can do it again or move on to plan b...I have 3 young kids...and I need to get the ball rolling so I can get back to life.

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  148. I have had M.D. for about 2 1/2 years now. we don't really have a timeline trend onwhat are "bad times of year", but it seems that these fall months is when i get it the worst. i'm only 26 years old and feel pretty helpless. I've had two steroid injections in the past, and the first corrected me for about 10 months or so. and i just had another in june and have been pretty OK until now, where i've had a ridiculous amount of attacks. My doctor is reccomending gent injections and i am so terrified. is there anyone my age that is going through MD? I feel like what if i get this injection and i'll be imbalaced for the rest of my life. i'm used to the hearing loss and i don't really have tinnitus that much. but i want to konw about those who are my age that have been having attacks and procedures done.

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  149. Anonymous, I'm sorry you're going through this. Unfortunately, Meniere's is so unpredictable that no one can tell you exactly what will happen after the gentamicin shot, or how many shots it will take before it really takes effect.

    I had the low-dose shots periodically for several weeks. This probably has a different effect than the high-dose single shot, but I'm not sure about that. What I do know is I needed at least seven shots, maybe as many as eight or nine. And even then, my vestibular nerve regenerated itself -- my doctor has seen this happen only in one other patient. This is one time I would have preferred NOT to be unique.

    There is a test they can give you to find out if the shot worked... it's called a caloric test. They can do this one of two ways: The first is to push cold air into your affected ear while measuring the response in your eyes and checking to see if you get dizzy and experience nystagmus. If you do get dizzy and your eyes start the jerking movement, your nerve is still functional, meaning the shot wasn't sufficient. The other way this test can be done is with ice water, which I hear is unpleasant. (Not that the cold air is any fun.)

    Call your doctor's office and tell them you are concerned and wonder if you could be tested to find out if the shot worked. They should be able to do this for you.

    When the shots finally did what they were supposed to do, I did go through several days of utter misery where I couldn't even walk without putting a hand on a wall to guide myself. After that, it was a gradual recovery, but I was pretty functional again within a week. Driving was difficult for awhile, and I wouldn't recommend doing long-distance drives if you can avoid it for some months, until the vestibular nerve that's still functioning takes over and adjusts.

    It's maddening that doctors don't tell you more about what to expect, but part of what's behind that is they simply don't know. Even I can only tell you MY experience. You might find that it is very different for you. I hope you find relief soon.

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  150. Nikki w,

    I wonder the same thing. Im 27 and although i wasnt officially diagnosed, i had my first episode when i was 14. It went into remission for several years, then when I was about 19 it started up again with about 2-3 episodes a year. Last February i started having ALL symptoms, ear pressure, hearing loss, ringing, and non-stop episodes to the point of needing to go to the ER a couple of times. I had the sac surgery and that worked for me for a while as in, i havent had any major episodes since. Only a few minor ones at night. I occasionally take Valium if the pressure is unbarable. But i also had to have thyroid surgery and thats what made my ear worse. Before my thyroid issues, i was actually doing very well after the sac surgery. And i ALWAYS know im going to have a bad day if i eat out and have to much salt. Like hamburgers or Mexican (i live in TX).
    Right now, i take a diuretic daily, vitamins, i exercise and valium when the pressure happens to be unbarrable. (i can deal with ringing and minor pressure) i also take Claritin D to help with allergies because with me, i know that plays a part when im sleeping. (fluid in my ears)
    With me, im glad i had the surgery first. Recovery was somewhat painful for a couple of weeks, but i didnt have episodes, and that was enough for me. I talked to my Dr. Yesterday and i think before i do the gent injections, im going to have the shunt surgery. Im just not ready for the "unknown" after the injections. Im also a stay-at-home mom to a 3yr old, and cannot aford to be out of commission for that long period of time. So, in short, if i get any worse then i am now, i will do another surgery before the gent. But thats just me. I hope this helps.

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  151. Tara- Yeah, my timeline sounds very similar to yours. My doc is very PRO-Gent, and anti-sugery. He likes that is 90% success rate of no more attacks, but i don't like what seems to be a huge question mark after he shoots a neurotoxin into my ear. and he doesn't like surgery because why take the risk of hitting the wrong nerve, why take the risk of this that and the other, anesthesia etc.. But i also dont'think i'm ready to commit to the "unknown" of gent. i just kinda felt that i had more time before i got to the point that i need it. Right now i'm holding off and getting scheduled for another steroid injection, to see if we can't hold it off for awhile. i don't mind that i can't hear so good, or the occaisional ringing and fullness, its the attacks that are bad. everything else i'm dealing with. but i work, i have a job, i have responsibilities. I feel like gent is an unknown for an unknown period of time and an unknown amount of suffering. I guess its the curse of the disease. its all unkown and individual. i just am frustrated. as we all are. But i feel like the surgery is a known, like, you have this surgery, and it works for a while and eventually you get bad again and they do soemthing else.

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  152. Nikki-

    I totally understand. My Dr. feels the same way about the gent injections, but he also understands that the "unknown" for me has to be the last resort. Don't let your Dr. talk you into doing anything you are not 100% comfortable with. You might want to get a 2nd opinion even. I see an ENT specialist in Neurotology and skull base surgery's. Take the steps that YOU feel comfortable with. Not just what your Dr. wants you to do.

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  153. I posted my first comment on this blog 25 June. I had a particularly bad episode (for me)on 1 July about 1 pm that laid me up for the rest of the day. Another bad one on 6 July, then less severe ones several times late July. No episodes at all since then. First gentamicin injection on 10 August after my otolarynthologist got back from holidays. No noticeable effect at all. 2nd injection on 17 August. Three days later I perceived a distinct loss of balance, although not as bad as I had been led to believe. I still continued my 6.5 km (4 miles) brisk walk (about 62 minutes) five days a week (doctor tells me this is actually the best therapy for balance). I try to walk in a straight line but can get a bit wobbly. I am a quite fit 73-year-old.

    Injections didn't hurt but I had a local anaesthetic each time. My eyes feel dreadfully tired all the time wich makes me feel tired all over, but once I start on my walk tiredness tends to disappear. I have a permanent cross-eyed feeling, although my vision is unimpaired.

    Its now nearly four weeks since my last gent injection (doctor felt the two injections had done their job, which he determined by making me follow his finger as well as another test where he tells me to focus on the end of his nose while he jerked my head around!)

    No episodes since the end of July. I'm hoping my balance will improve in time and I'll ask the doctor about my tired eyes at my next appointment on 23 September.

    I'm not sure how much things can approach normality in time, but I consider myself quite fortunate compared with other cases on this blog.

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  154. I'm glad things are working out for you, hopefully over time your balance won't be so bad.
    Although my eyes didn't seem effected by the gent injections I was awfully tired right after I receive them
    good luck and stay in touch
    David

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  155. Hi David
    Thank you so much for this blog..It is nice to see other people with MD. I was diagnose in 2006,but my attacks became daily in May after a flight from Vancouver to Toronto, I work in Vancouver but still live in Toronto. I was in the process of moving.. I work for an airline as a ticket agent. Now I can't work,fly and drive. I thought my life is over. Now my attacks are less frequent, I am following a low-salt,no caffeine,no alcohol and no chocolate ( the most difficult) diet. I've noticed during my severe attacks I started to panic it made way worse. I finally saw my specialist today.( In Canada wait lists are long and longer). My sick leave insurance was having a great difficulty to understand this disease,even with my GP letters, Mr Dr. told me about gent, injections but it was different then yours..He want me to have injections twice a day at home and to see him everyday for 1 week. My spouse is just love it the idea of giving me injections and driving me to the hospital everyday.Now I am wondering if it is a good idea to do the injections that way. I read maybe my ear drum will be permanently damage..which it is not a good thing when you fly often. Oh by the way I found meditation to work wonderful on my dizziness and attacks..
    Again tks for your blog..

    Lyne

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  156. thanks for the comment Lyne and stay in touch and let us know how you are doing.
    DAvid

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  157. Lynne, it's possible to do those injections by using a tiny tube that can be inserted into your eardrum at your doctor's office under local anesthesia.

    My ENT specialist did this for me, and I was able to give myself the injections at home without using a needle. I would fill the syringe to the right dosage using the needle, then take the needle off the syringe to insert the syringe tube into my ear and push the plunger. Then I would hold my head to one side while pumping my finger against the tragus, that little flap at the outer opening of the ear, for a few seconds. That pushed the medicine into the inner ear through the tube.

    It was easy to do. Later, I developed a small infection around the hole where the tube was, and the doctor removed the tube and treated the infection. The hole healed, and as far as I know, my eardrum is OK, although there is some scarring.

    The thing is, with Meniere's Disease, you will probably lose much of the hearing in the affected ear anyway, so that is something to consider. You can wait until you see what happens to your hearing and decide based on that. In addition, the gentamicin injections are very likely to damage your hearing also.

    It's very difficult to make good decisions about Meniere's treatments when so many of them are invasive and can do permanent damage to your hearing or balance. You have to weigh the potential benefits against the potential damage. Not an easy thing to do.

    Good luck!

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  158. Thank you so much David and Peggy, I will kept in touch...I am staying very positive :)

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  159. Thank you Peggy for the thoughts. (my name is melanie..but i am somehow only anonymous on here..haha)...... I ended up 7 days in the hospital getting IV fluids and tons of valium after a pretty nasty fall...but still feel my balance isn't that bad...or at least as bad as I would have expected or have been told. That is the only part that bothers me...cause with the ONE HIGH DOSE (newer method) you are supposed to really struggle with balance. I'm eager to get the Caloric test again to see how I'm doing but not sure at what point they will do that. I have to travel to Chicago for my treatment as we sought out one of the 'better known' neurotologist to seek treatment. I'm at week 2 now..and pretty much nauseous most of the time but not too bad. More weak from being in the hospital.
    But being honest....all of this will be so worth it if my children never have to see their mom lying on the floor from a 'drop' attack ever again. I'm willing to lose hearing in one ear and be a little off balance...for me..it's worth it. Still wish there was more info and doctor's prepared their patients better for what could or could not happen. Ty for all the info everyone....guess we are all so different.

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  160. Melanie, I also wish doctors could prepare us better for what might happen, but I have a feeling they can't because of all the differences from case to case. And I agree that everything we go through in terms of treatment is worth it if we can get past the horrible symptoms that make this illness so dreadful.

    I'm still really wondering what my own prognosis is. I don't know if having a labyrinthectomy is the final word, or if that ear could conceivably go back to suffering symptoms. I also don't have a clue whether my right ear will develop symptoms. I'm already starting to have tinnitus in that ear.

    So even though I don't have a lot of drastic symptoms NOW, I look ahead to the months and years of the future and wonder what on earth is in store for me.

    Good luck. Oh, and if you look below the box where you enter comments and scroll down to how you enter your comment, you'll see you can opt for Name/URL and enter your name. That's how I do it. Or you could just manually sign your name. :-)

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  161. hello melanie
    menieres is a condition of the inner ear, thats one thing we all have in common.
    but, were we all differ is that it seems we all have another condition/s that triggers it and makes it much worse. reading this blog it seems that the following are some of the conditions that make menieres worse.
    allergies
    asthma
    migraines
    herpes
    thyroid
    low immune
    as someone who is in a bad place as yourself, try and discover your body and what triggers you may have, as just dealing with the inner ear is not always the answer, look around and you may find stuff that can really help with the severity of the attacks and dizziness.
    love
    ali

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  162. Don't forget stress, Ali. That seems to be a HUGE trigger. And I can say truthfully that my worst periods of Meniere's have all been attached to stressful parts of my life.

    There are doctors/researchers who believe Meniere's is an auto-immune disorder of some kind, which could be true of many of the other health issues you mention. I wish someone was smart enough to figure it all out and address it all together.

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  163. thank you ladies...finding this blog has been somewhat a spirit lifter...I've felt kind of 'alone' during my journey. My husband is a doctor, but is so helpless and feels so helpless as this is not his specialty. I feel my family often suffers far more than I do.

    Peggy....the labyrinthectomy would sound so tempting...if u could be certain u would not have bilateral MD... but with the ringing in the 'good' ear...that would really scare me. I'm considering nerve sectioning but again..I being so young, just cannot be certain that the other ear going bad will one day render me incapacitated. Scary....

    Stress....OMG....if that is the cause, I might as well give up now..hahaha..I have 3 young kids...carpools, hw, sports,....a husband who is a doctor...and live 14 hrs away from the closet relative..hehehehe....but being a glass half full person has made me not feel too stressed out...I'm just trying to be funny!!!!

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  164. Melanie, I totally understand that feeling of being alone. It's impossible for anyone who hasn't been through it to really "get" it. Watching me go through this has torn up my husband and family, too.

    I had the labyrinthectomy before the ringing started in the other ear. I might have decided not to do it if I'd thought going bilateral was a strong possibility. But I don't think there's any way of guaranteeing that you won't go bilateral, ever. Meniere's is such a crap shoot...

    Remember, though, that because you are young, there will be many options available to you down the road a bit. Researchers are working on new ways to enable people to hear again, with prosthetic devices or even by regenerating the tiny hair cells that Meniere's kills off. They are also coming up with ways to enhance the vestibular function to improve balance. One doctor is testing a system to prevent Meniere's attacks with something like a pacemaker for the inner ear. No one knows when this stuff will be ready to use on patients, though.


    Learn to manage and contain stress as well as you can. You can't ever get rid of stress in your life, but you can adapt how you process and respond to it. A lot of people find that meditation helps. I've wondered about biofeedback but haven't tried it.

    I think you'll have options. The hard part is figuring out what is right for your situation.

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  165. so peggy...have u had no more attacks since you had the labyrinthectomy???? I have good hearing, so I'm not a candidate for that...but just wondering if that did the trick?

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  166. Melanie, I have not had a full-fledged attack with vertigo and nausea since about a month after the surgery. Oddly, about a month after I had the operation, I did have an attack. But since then, nothing big. I have chronic dizziness that is fairly debilitating, and I have no idea whether the surgery is supposed to stop attacks forever or if things can go bad for that ear again. But I've had nine months of comparative calm.

    You should definitely NOT have this surgery if you have good hearing still. It will very likely reduce your hearing to the point where you will be nearly deaf on that side.

    Did it do the trick? Well, it gave me at least nine months of better conditions overall. But I'm very frustrated that my balance now sucks, my hearing on that side is gone, and I'm dizzy all the time. I suppose on balance (no pun intended!) it was a good trade-off, but by no means a total success in my book.

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  167. thank you peggy....so much to consider and nice to hear other's experiences.

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  168. I had 2 injections on a Monday afternoon and all hell broke lose Wednesday night lose of balance, nausea but no vomiting. I went back for a followup the next Monday and he said it is working and he didn't give me another one. However, i have developed double vision. He sent me to a nuero-opthamologist who is not sure it is from the shot. They put a prism on my glasses and i can see better but am still having balance problems. I am a whimp when it comes to pain but I didn't think the pain of the 2 shots was bad. Has anyone else had double vision problems?

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  169. It took longer for me to feel the effects of the gent injections but I can't remember my vision being impacted at that time. Although there other folks who have the prism on their glasses.
    stay in touch and let us know how things are going
    thanks
    David

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  170. I am not bad enough to have double vision, but I have had definite vision problems since my vestibular nerve gave up the ghost. I'm supposed to pick up my glasses with the new prism this week, and I'll let everyone know how it's going.

    Unfortunately, my balance has not come back, after a year following the surgery to sever the nerve. That's really, really disappointing. And a friend of mine, who had a similar surgery years ago, says her balance has never gone back to "normal," although it's good enough for her to function now.

    I'm starting to fear that vision and balance issues are a permanent legacy of the current treatments for Meniere's. I just keep telling myself that this is where the science is for now, and it's better than falling down and vomiting. *sigh*

    Anonymous, did your doctor suggest vestibular rehabilitation therapy to help your good ear adjust and compensate for the loss of the other one? That should speed up the process of getting back your balance, and there are also eye exercises that are part of the therapy.

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  171. thanks for the advice about the eye excercises and vrt, i wiil explore that option. peggy...are you able to work or drive?

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  172. when you are in the stage of regaining/ relearning your balance after the injections , can you "over do it" with too much physical activity? I seem to have off balance and sometimes dizzy/spinning spells. Is that what any of you experienced? Any suggestions on exercises or activities to help relearn your balance? Thanks for your quick responses and suggestions!!! It's hard not knowing if this feeling will be permanent or not.

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  173. Anonymous, I'm able to drive for short distances on local roads. I wouldn't risk a highway yet... and I'm not sure if I ever will. It scares the heck out of me now.

    As for work, I had a job for three months at the start of this year, but was fired because I simply couldn't get up to the pace they demanded. I've applied for social security disability, because I'm not at all sure I can do a full-time job of any kind.

    I've done some part-time freelance work in the past two years, but I felt slow in every sense of the word. It was home-based, which was helpful, but I still didn't feel like I was up to speed. I also got exhausted after just a couple hours of work.

    But each patient is different. You might recover more fully, or more quickly, or both.

    As for the exercise question, I don't know how to answer that. I think exercise is important, but it could be risky if you do too much or without supervision and guidance, especially in the early stages (we're talking about right after the gentamicin injections kicked in, right?). I would see if your doctor can give you a prescription for physical therapy at a rehab place that has a therapist who specializes in VRT.

    Good luck!

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  174. For some great at home help to improve balance, try Nintendo's WiFit balance system games. I had two low dose gent injections at the end of August and early September (to help with months of daily, bed ridden incapacitating vertigo) but was left incapacitated, unable to lift my head, get up or walk without "whiskey" legs (had no idea this could happen!) Used the Wi Fit system during Pt along with daily walks on the local, sandy beach plus balance board and foam board leg exercises. The Wi Fit system works best because it's designed to sync the eyes, ear and feet so balance can be restored. At first I could hardly do the exercises at all but am proceeding with daily, solid progress. Plus I have found that the "games" (soccer ball, balls on table top, river float) have eliminated my "brain fog" as well as the constant pressure I've felt on my head. Highly recommend this amazing balance aide.

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  175. Hello everyone,

    My name is Doug. I have battled MD for three years now. I have lost just about all of my hearing in my right ear due to MD. I have tinnitus in my ear also. I have a tube in my ear and with the Gentimicin shots, I am able to make it six months or so before I have to get another shot. Today, I had another round of the Gent. shots and I am dizzy. I suffer from violent attacks when my MD acts up and it becomes a temporary handicap. I have been through extensive testing and I have tried about every procedure available (except for the labyrinth). If I can answer a question for anyone or if I can be of any help don't hesitate to ask. My email is brewers4us@yahoo.com

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  176. Hi Doug~
    Did they put the tube in prior to your receiving the gent shots..and if so, did you notice any drop in vertigo just from having the tube placed?
    Thanks!
    Lauri

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  177. I did get the tube before the Gent shots. The tube seemed to ease up the frequency of my attacks, but it took the Gent shot to get some relief. I have found that I have to have the tube in place and around ten to twelve months my symptoms start back and I have to have another round of the shots to my ear. My MD had pretty much destroyed all my hearing in my right ear, so I didn't really notice any hearing loss in my right ear after the gent. shot. By the way, when I get the gent. shot, they go through the tube in my ear. Hope this helps Lauri. If I can ever help you feel free to email me at brewers4us@yahoo.com.

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  178. Hi Doug, I have had Md for 20 years and have had the steriod injections , had 3 so far with chemo. I had tubes put in last monday and tomorrow was going for another injection for the coctail I call it and was going to try the gent treamtents but dont think I will go that route now if I still am going to have attacks think I will stick to the coctail there giving me now. Least now I dont have to be there so long they adminster right through the tube . With the tubes did you find loss of hearing , I ended up in emerg with a massive ear infection think it was from the tube and chemo same day treatment maybe to much. I am nervous now to do the gent after reading that you still get dizzyness and spells I get them now but there not as bad since the coctail treatments , have had 3. So tomorrow I will have my 4th one and then one more and they reevaluate. so frustrating all this modern technology and really no cure, I can say atleast now I am in the Menieres and vestibular clinic in Toronto and the they say its one of the best so I hope all goes well for you and everyone , think I will stay clear of the gent treatments and continue with the chemo /steroids . O wanted to ask you did you have the steroids before the gent or try them . Thanks for anyones input and Thank you for this site. Kathylea

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  179. Kathylea, doctors usually try the steroids before the gentamicin, because the steroids are not ototoxic, and the gentamicin is. They wait to use the gentamicin until the person's hearing is so far gone that it won't matter if the gentamicin destroys more of the inner ear. The same applies to a labyrinthectomy surgery.

    I also developed an infection in my eardrum as a result of the tubes. I guess that's an inherent risk. I also imagine chemo complicates matters... I'm sorry to hear you've going through both at once.

    I hope the Toronto clinic helps you.

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  180. Thank You Peggy . most of my hearing in my right ear is pretty much gone now have had this diease for so long just very leary about that gentamycin also to its my right side that is affected with vestibular nerve damage and my left side has a deformatily and club foot so also to a risk as my balance on the left side isnt good and if I go that route on the right side taking a big risk I think. Hope are is going well for you and ty for the support and info. Kat

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  181. Oh, Kat, I'm so sorry. Yes, anything that affects your balance will be risky for you, and it's good to be careful. I hope you find relief soon.

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  182. Hey Kat,

    I did not have the steroid shot. My hearing in my right ear is gone and the doctor said the success rate was much higher with the gent. shot compared to the steroid shot. I managed to go about ten months since my last gent shot since my symptoms have started back. I had another gent shot last week and the dizziness has calmed down but it is still occurring, so I am going to schedule another shot next week. For me, it takes a tube in my ear and regular gent shots in order to function. If you have any hearing in your ear, you might want to try the steroid shot, but it does have a lower success rate. Hope this helps and good luck!

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  183. Kat,

    I never lost any hearing when I got the tube in my ear. The first tube lasted less than a year, then I got my second tube which is called a T-tube, I believe. It is much bigger than the standard tube and the ENT said that they stay in for three to five years. He said there has been instances where he would have to take them out before they fall out. It takes a combination of the tube and gent shots to keep my MD in check. Without either one, I go down hill drastically.

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  184. Wow Doug I feel for you, I have been having the steroids and chemo together as there is also a growth there trying to shrink , cant operate would loose my eyesite and have droopy face could bleed internally aswell so the steroids seem to have helped abit I have one more treatment and then they reassess and send me home with a trial to keep it under control. Even tho there injecting the chemo through the ear into my head I still get them side affects which one of them is dizzyness go figure, and headaches which I get from the growth anyways boy what a mess. I hope some day a cure for us all , but for now thank god we have this website to chat with each other and see what works for everyone and things to try. I think half the battle is finding a dr that will try and not fluff you off because you have been seen by so many. So for me the steroids seem to take the worst off. One question dont no if anyone can answer it and i forgot to ask the specialist is that will the nerve eventually die . ty all so much and God bless. Kat

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  185. Hey Kat,

    My ENT told me that the nerves in the ear drum do die off and my other ear must compensate for the loss in balance. My hearing is gone in the right ear. I don't know if all the nerves eventually die off or what. I also agree that this website is a tremendous help for those of us that suffer MD. I know my wife and kids get tired of my symptoms and they don't know what it's like to have MD. I am glad to see others successfully living their lives with MD. A good ENT can make a huge difference, I am currently switching to my third one. I wish you the best with your treatments and I will keep you in my prayers. If I can be of any further help, please ask.
    Take care, Kat.

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  186. Hello fellow men's.
    Just happened on this site, just in time I am thinking. After reading a lot of your comments I am going to cancel my gen op. I have attacks most days, but they tend to last just 2 -3 hours. The rest of the time I am nervous and washed out, but can funtion. The gen op would possibly leave me in a bad way for more hours than that. Thanks for all your comments there is more info here than I have found before. My meniere'e specialist is not telling me anything, I sometimes think I know as much as him. Not that I get much contact, waited over 2 years for first appointment and 10 months for second. Now considered an "urgent" case because of severe depression I have waited over 5 weeks for a letter for another appointment. My GP is also in the dark over the condition.
    I am following the very restriced Paleo Diet; fruit, veg, nuts, small amount of lean meat, or fish. My husband thinks there is link between the attacks and the bowels, anyone else thought this? I have improved lately while taking high doses of probiotics and keeping to the diet, but if I go off it the attacks increase again.
    Please reply as I am really uncertain about continuing as I am or having the gen op.
    Gail

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  187. Gail~
    It's a hard decision.
    I,like you, have the same Gent decision to make, and am really worried I will be worse than I am now..which is pretty bad.
    I live alone, so I don't have anyone else to pick up the slack if I can't function for an extended period of time.
    I've had MD for 3 years and have had abdominal cramping and the big "D" on and off since the Menieres began. It's weird. The Dr.'s I saw also felt it must be from something other than MD, but despite testing they were unable to pin it to anything else.
    I know it's related to MD. How or why...who knows? MD has sooo many symptoms.
    It's like a virus just came in and settled all over in your body. Seems to especially love to destroy the inner ear.
    My diet is the same as yours..it does seem to help some.
    At this point, I'm leaning towards NOT doing the Gent injections, although for some people, they did help. I just can't deal with being any worse.

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  188. I want to stress that the gentamicin shots are probably a bad idea for people like Lauri, for whom the dreadful possibility of bilateral Meniere's is an imminent fear. But for someone like me, who wasn't in any short-term danger of going bilateral, the gent shots were worth it to regain more normal functioning.

    For me, the strange thing was that my vestibular nerve proved to be too strong for the gentamicin. We tried and tried and tried, but the nerve kept regenerating itself even after repeated shots. So, I decided to have the labyrinthectomy surgery, which completed the job the gentamicin couldn't finish.

    For me, this made sense, because my right ear had never shown any signs of Meniere's Disease. I do worry a bit about what might happen down the road, but I still think it was worth it.

    But if there's any real likelihood that your second ear will become involved in Meniere's, I'd say preserve the balance function you have, just in case. I have no idea what I'll do if I do go bilateral somewhere down the road, because I no longer have a "spare" vestibular nerve.

    But I still say I have no regrets about the choices I've made so far, if that helps anyone at all. I was definitely way off-balance for a few weeks after the gentamicin treatments and surgery, but it was nothing I couldn't live with. And I'm very pleased that I haven't had a full-blown vertigo attack in almost a year. That's saying a lot for someone who used to have several attacks a day.

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  189. Peggy~
    So true..the fact that my 'good' ear is not w/out any symptoms at all makes this an extra tough decision for me.
    For the last week I have had constant dizziness and more ear and head pressure than ever. Balance more off than usual. Feels like something is going on..but what?? (the vertigo continues)
    Are you still suffering with daily dizziness?
    Hard to function like this, that's for sure.
    Hope your Turkey Day went well!

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  190. Hello Laurie,
    Sorry to hear you have to manage alone. I try to do everything for myself, but it is a great help having my husband give me moral support.
    I wonder if taking probiotics would help you? Don't think they can do any harm, apart from emptying your wallet!
    From reading what everyone says I guess over here in England we are not kept so well informed about the side effects, I wasn't told anything about balance problems, I have learnt what I know from websites. Usually American ones, the English ones seem un-informed.
    Having just had more bad days I am still undecided, but comments from this website have given me a list of questions to ask when I go for my pre-op assessment.
    Thanks everyone and good luck to you all
    Gail

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  191. Yes, I do still have daily dizziness, Lauri. I'm also very clumsy these days, although I'm blaming that on the prism lenses. I'm still getting used to them. My ENT says it's too soon to say whether they are working or not, so I'm toughing it out for awhile longer.

    My Thanksgiving was very quiet but nice. My husband works in retail, and he was at the store until 7 p.m. I spent the day knitting and cooking a roast chicken with the usual side dishes for Thanksgiving, and we had it together when he got home. It was nicer than I expected, actually. Very peaceful.

    How was yours???

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  192. Peggy~
    We have a large family gathering at my Mom's every Thanksgiving. Unfortunately I was unable to be with them due to how bad the Menieres is. Seriously dizzy, terrible balance,fighting off vertigo..daily right now. I really missed not being able to be there, but my Dad drove a plate over to me later. Still got Turkey! :)
    Hoping next year I will be there.
    We all miss too much with this disease.

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  193. Yes, we do miss a lot with MD. I might have driven out to see my family for this holiday if I could still drive on parkways. :(

    I'm sorry you missed your family holiday, but glad your father drove over with some food. Hoping you'll be well enough next year to go to them again.

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  194. Hello everyone and ty Doug and all for all the info, had my last chemo and steroid shot on thursday so now home trial. Hard to no now whats up or down as the chemo causes dizzyness to I cant win, but i have noticed a difference. I am not able to have the nerve section or gentamycin as I only have half my balance on the left side cause of the deformatity i have. I hope one day for us all there will be a total cure, they have come a long way since i was first diagnosed so thast something to be thankful for . Doug I will definately ask him about that Ttube i just have the white grommet type ones he said they last about 6 months ty so much for all your help kat

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  195. David~
    I've been reading back through the Gentamicin posts.
    It seemed like for about 2-3 months it was bad, then relief only lasted maybe another 8 months or so before the shots had to be repeated.
    Was that pretty much your experience?
    What was it that caused you to decide it wasn't worth having any further Gent done?
    Thank you!
    Lauri

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  196. Hi Lauri,
    After 6 shots it just seemed to me that it wasn't getting me anywhere, in fact the doctor at the time didn't think it was helping either.

    I think that the shots gradually made my hearing a lot worse.
    David

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  197. Lauri, the weird thing about gentamicin treatments is that in some people, the vestibular nerve will heal itself. That happened to me. I had relief for a month or two, then I started feeling off-balance again, until I went back to having attacks. My ENT said she only had one other patient to whom this happened, but it's apparently quite possible. That's the only reason I had the laby surgery. :(

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  198. Lord having a rough week, seem to have one week were the decadron works then back dissyness for a couple days , taking the sudafed to see if that helps to does anyone else notice if the sudafed makes a significant difference and also caffiene i think may be my biggest issue right now , might have to start looking for decaf . hope everyone is having a good month take care katt.

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  199. Kat, decadron worked for me for awhile. But eventually I had to move on to other medications. I returned to it from time to time to try to control inflammation.

    Definitely try to give up caffeine if you can. Cutting way back on salt is also helpful.

    I haven't tried sudafed as a regular thing for Meniere's, although it might be good to cut down on the congestion that can build pressure in the ear. Did your doctor suggest that?

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  200. Use the sudafed that has no other ingredients will sometimes work when ear pressure builds up. I usually don't have congestion but pressure. I have now started Bonine, a 24 hour chewable tablet daily and it seems to help some.

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