Sunday, May 30, 2010

Meniere’s disease and the dex steroid injection

When ever I hear about Meniere ’s disease and injections I think of gentamicin. Actually it isn’t a pleasant memory either the pain was terrible or it took awhile to take effect. But anyway there is another type of injection and that is with Dexamethasone steroids, I wrote about that awhile ago but recently someone wrote that they had some success with them.


Daniel Pancy was kind enough to tell me how the dex injections had worked for him…

David


I get my DEX steroid injection in my left ear every 6-8weeks but usually more to the 6 weeks side of the period. I have a tube in that ear with makes delivery really easy. I figure I have been on them for about a year now, as long as I get results my ENT will continue to have me get them.


They tried the Gent to deaden that nerve many many years ago and it failed to do that. The DEX is not intended to deaden the balance nerve, it calms down the vestibular system. I respond very well to steroids for Meniere's symptoms. The DEX stays inside of you middle ear and really has no side effects except it may lower blood pressure in women; at least that is what I have been able to find.


Take Care,


Daniel

I don’t think that my doctor ever mentioned steroids to me but it sounds like to can be effective for some folks. And I imagine that the tube in the ear would make the procedure a lot less painful that having a needle going through your ear every time you have a gent injection.

By the way, the past 2 days haven’t been too bad, although I haven’t done much and I haven’t driven that far. My gent an injection is on June 9th so that should be interesting.

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Thanks

66 comments:

  1. Hello David,
    I too, have had success with Dex steroid injections. I have only had 2 total, and those were 16 months apart. I had success at controlling vertigo for 15 months with the 1st injection. I was not Meniere's symptom free for those 15 months but I had NO vertigo, which was perfectly acceptable. When the vertigo returned, it was a little more fast and furious than before, so I just had my 2nd dose yesterday. My ENT told me that 3-6 injections in a series are more typical and all that he would recommend and that if it did not bring relief, going to Gent shots would be the next plan of attack. It hasn't even been 24 hours since my injection, and I feel a difference already. Not foggy, no head pressure, none of the normal triggers that would tell me I'm in for a bad day. Best of luck to you with your treatment on the 9th and all the best, -Lita

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  2. Hi Lita,
    I'll have to talk to my Doctor about steriods because lately I have been hearing some good things about them. I'm glad that they are working for you. With meniere's the big thing is always the vertigo attacks, I can live with anything but that!
    I am definitely not looking forward to having the gent injections again. but I have to do it or something to avoid the major attacks.

    thanks for comment and stay in touch
    David

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  3. Hi all MM sufferers!! I have Bilateral Meniere's Disease. I have the shunts in both ears. I have undergone treatment since I was 21. Before the shunts the ENT tried hospitalization and strong diuretics. It was 3 days of agony and only gave me 3 days of relief. The shunts worked well and was immediate relief. I am now 36 and back in May 2010 had my 1st series of dex shots in the right ear! Wow! is what I can say to response! My only concern is by the time i had the 2nd injection, I started having seizures. My ENT assured me that it wasn't related to the injections. The seizures went away about 2 weeks after my 3rd and last injection. When I went back for my check up, I talked him into doing the left ear. I got my 1st injection Friday and go for the 2nd today. I started having seizures on Tuesday and having about 5-6 a day. The shots are really working and it is so nice to have my balance back and no vertigo attacks. I am going to question my ENT as well as my pcp today again if the shots have anything to do with the seizures. I don't want to stop them though! After the last spell, I was diagnosed with Pzuedoseizures. I don't think that is completely true, but wonder if anybody has had seizure or tremors with any of their ongoing treatments. I can't brag enough about how well the Dex shots have worked. I will keep everyone posted as to if the seizures subside. If they do, then this treatment is worth it and would do it again! I am looking forward to a year of no dizziness!! The shots worked for me, but as always might not work for you. God bless, Kristi

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  4. Hi Kristi,
    thanks for the comment you really have gone through a lot! I'm glad that the dex shots have worked so well for some it doesn't seem to. The same way with the shunt surgery.
    Let us know how things are going.
    David

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  5. Hi, I'm considering the steroid injections too, having also heard good things about them. I'm based in the UK and recently found a newspaper article about how good they are. Here's the link:

    http://www.dailymail.co.uk/health/article-1205621/Dizzy-spells-Noises-ear-At-theres-end-torment.html

    I want to know if anybody has tired them with improvement to hearing and tinnitus? This article certainly seems to indicate that, and with minimal risk and virtually no damage it doesn't seem like I have much to lose. I think the problem here though is cost, and I may end up paying privately (probably why no ENT has mentioned this before!)

    My hearing over the last few weeks has gone down bank quite rapidly and I have roaring tinnitus at the moment. This has come suddenly following a period of 6 months with no vertigo and my hearing came back to almost a normal level. At the moment I don't have vertigo, but I do have some dizziness and feel like I could get an attack at any moment. So as you can imagine I'm very anxious and depressed about another cluster of attacks coming (previous to that I had about 9 months of roaring tinnitus, dizziness and vertigo). During that time my vertigo got less frequent and severe until it stopped completely. So now I'm waiting to see ENT (next friday) and I'm thinking about pushing for these steroid injections, on the basis that they might induce a remission before it gets hold of me. But then again I might not get the vertigo! Its very frustrating isn't it? I just hope my hearing comes back again and takes the awful tinnitus away! Don't get me wrong, I always have tinnitus, even when my hearing came back, but this was at an acceptable level for me. I wouldn't notice it during the day, just a little at night, however this roaring is on a whole new level!

    I'm also waiting to have some blood tests from my GP as he wants to check my thyroid. I've read that many menieres patients have a thyroid problem, and in some cases when the hormone levels are corrected, the menieres symptoms also disappear. Interestingly research in Australia is looking at hormone problems as a cause.

    I'll keep you updated and let you know how I get on. Hope everyone is doing ok.

    Becky

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  6. That is so interesting about Menieres and Thyroid issues. I don't know if it's the case for me, but within a 5 month period I had the ear sac surgery for Menieres, then 3 months later, I wound up needing a partial thyroidectamy. I have Menieres on my right ear, and I had the right side of my thyroid removed. I cant tell if that's just coincidence, but it is strange.

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  7. Hi,
    I had Dexamethasone injected into my right ear just today.
    I have bilateral Meniere's but my surgeon wants to test one ear first.
    It wasn't too painful but yes, it sped up my vertigo which was already bad and always is.

    I have severe Meniere's - that is to say, it's constant. In all my years with it I have never had a single day of relief.

    I have been my surgeon's Guinea pig for years now, which I don't mind because I'm happy to help others if I can, even if it doesn't really help me.

    I don't know yet how this will work for me but I am anxious to see how the next few days go.

    I will let you know how it goes.

    Thanks for this.
    Nina

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  8. Nina, I'm so sorry you're going through this. That sounds horrible. I remember when I had attacks every day for months, and it was awful.

    I know what you mean about being willing to be a guinea pig to help further doctors' knowledge about Meniere's. And who knows? It might even help us, when they do hit on something that really works.

    Good luck.

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  9. Hi Nina~
    You have my sympathy and understanding!
    Lately I have had ongoing vertigo, and it wears you out when you can't recover enough before another attack hits.
    Question: Did I read your post correctly..did you say the steroid shot made the vertigo worse for you?
    Also..I was wondering how long you have had Menieres?
    Take care~
    Lauri

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  10. Hi Nina~
    You have my sympathy and understanding!
    Lately I have had ongoing vertigo, and it wears you out when you can't recover enough before another attack hits.
    Question: Did I read your post correctly..did you say the steroid shot made the vertigo worse for you?
    Also..I was wondering how long you have had Menieres?
    Take care~
    Lauri

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  11. Wow so glad i found this, I had my first steroid injection into my right ear today, have 4 more to go and will get them every 2 weeks till there done my menieres has cause so much damaged that surgery is not longer an option for me and so this was my last resort, i sure hope it works really upsetting all this modern technology and nothing to help. I was lost between the cracks they say and so now 27 years into menieres this is a new thing for me . I wish everyone the best and will keep you post.

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  12. i too m surrering frm menires.planning to get dex shots in mid nov. lets see how it goes..will keep u guys updated

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  13. Good luck and let us know how it worked out
    David

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  14. I recently had a series of 4 dex shots each a week apart...Wow what a a differnce...between night and day...before the shots i was suffering with 4 or 5 vertigo attacks per week.......the tinnitus is still terrible and my hearing is shot but without the vertigo my life is 100% better!!!!was wonrdering if anyone whos experienced relief with dex shots could post how long the relief lasts before another series of shots are needed..in advance thanks a million-Jen

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  15. Hi Jen,
    I am glad that your vertigo attacks are down and hopefully it will stay that way for awhile.
    I never had the dex shots, have the affected your hearing any?
    David

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  16. I don't think the dex should affect hearing... it's an anti-inflammatory and immuno-suppressant. That's interesting, since there are theories that MD is caused by an immune disorder of some kind. But whether it helps the pressure and therefore the tinnitus by reducing the swelling or by quieting the immune response, it should leave your hearing alone.

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  17. hello people/lauri
    i had the following procedure: left myringotomy, grommet insertion and injection of intratympanic steroid.
    that day and the following 2 days after, i thought i was cured, then on the third night this heavy tinnitus came about and my hearing went to vertually 0 and i was back to square one. i went to the dotor for a post op chat and he explained that this is normal as the grommit and steroids are in a battle with mr menieres. i have another five injections to go then they will evaluate. i do feel that the grommit is helping with my balance function, but its a bit early to say.
    regards
    i will keep you informed.

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  18. Ali~
    Glad to hear from you.
    Has it helped any with ear pressure or vertigo?
    Was either one painful?
    Since I can't have steroids done, I was hoping the tube itself might help.
    I'm glad it went well for u! Hopefully the symptoms will continue to decrease, along with the tinnitus.
    BTW..how often were you having vertigo attacks prior to this?
    Lauri

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  19. Ali - I'm glad the early signs are promising and hope the grommet and steroids continue to make a difference for you. I found when I had one that it seemed to release some of the pressure for awhile. It was a nice feeling while it lasted.

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  20. ola
    lauri
    i was under local anesthetic, and it did not hurt one bit, very easy operation.
    the tube seems to be helpful but you really have to put into consideration that it is temporary (they last up to a year).
    i have not had a big menieres attack for years (since i was put on propanlol and made huge diet changes), but i am consantly kinda dizzy and if i have a buzy day or eat something wrong i can feel something bad would happen.
    i will keep you updated with how i feel.

    peggy
    the grommit and steroids seem to have taken some pressure off, i really do wonnder if its temporary, as alot of research suggests that its is not a long term fix.
    i have a feeling that one day i will have the gent shots. i know you and david have not had much success with these but my surgeon was saying that gent injections have a very high sucess rate. especially in terms of sorting out the balance issue.

    regards
    ali

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  21. Ali, gentamicin shots have a very high success rate, but they harm your hearing. Most doctors don't recommend these shots until you have lost most of the hearing in that ear. For me, the fact that the results didn't last long was a fluke, apparently. My husband says that the smaller the chance of something happening, the more likely it is to happen to ME. :p

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  22. hello peggy
    based on what my surgeon said only 20-30% of the people who have gent shots, have hearing loss (honestly does not look like a bad gamble to get rid of the evil balance issues). thing with forums is that the people who are cured never come on them again, so all you get is the people who have had negative outcomes posting, and the ones who are still searching for answers regarding there menieres.
    ali

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  23. That percentage (20 to 30%) was high enough that my ENT/surgeon didn't want to go that route until my hearing was bad enough to make the risk more acceptable. We wanted to try other, more conservative treatments until we exhausted those options. We were trying to preserve my hearing as long as we could, not that it lasted much longer anyway.

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  24. hello
    to all people who have had the dex steroid injections.... did you have tinnitus and deafness after the op for some time,?
    regards
    ali

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  25. Ali, I never had any tinnitus or deafness after a steroid injection.

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  26. hello peggy
    yes my ears are playing tricks on me since the grommit and steroid injections, but i think the balance function has improved on the whole, have one more injection (3 in total) then will give it 3 months to see how its working.
    my surgeon said somthing interesting, and that was that steroid injections help people more with the auto immune side of things/gent works more for menieres.
    also that they will only really ever know if you have menieres or not once u have died and they do an autopsy.
    i asked him if he could kill me for 2 hours and bring me make to life and check :)
    happy new year
    ali

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  27. Ali -- LOL ... there are all kinds of things I'd like them to check out for me if they could "kill" me for a couple of hours and bring me back when they were done fiddling around under the hood. *sigh*

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    1. Hi All,

      I had my 1st steroid injection today and my ENT wants to do again in 7 days. I was not aware that I could have again so fast until I read these blogs. I thought I had to wait 3 months but whatever.

      I'm 6 hours out, and the tinnitus (I'm bilateral by the way) is deafening still and I notice no change in fullness or hearing? So far.....Is it too soon? I don't know if I want to go through it again. It was very painful and I was very deaf for the whole thing. So far nothing is changed and now my ear hurts.

      Goal: to get me off steroids by mouth...and improve hearing. That's it.

      I've had gent injections in the past and did not notice change in tinnitus or hearing.

      Deafening tinnitus with massive fluctuations in hearing (hourly). Vertigo is under control on oral steroids....just having issues being on them so long.

      Also, prednisone acts as a mild diuretic too in addition to its anti-inflammatory properties.

      Margie

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    2. Margie, I think the frequency of the shots depends on what dosage they use. There are two schools of thought about gentamicin, whether to do large dose or low dose. I don't know, however, that it will help your hearing. Mostly, when I had gentamicin injections, it was to try to stop the vertigo attacks.

      Does your doctor numb the eardrum before giving you the shot?

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    3. Hi Peggy,
      It was a dexamethazone injection, not gent. I can't have destructive procedures anymore since I am bilateral. I would only consider another EMS surgery again if the vertigo becomes bothersome.

      No, he did not numb anything and he told me he wouldn't. I was prepared for that part.

      The pain is all gone now and I CAN HEAR....for now anyway. Tinnitus is way down...for now anyway. I have to take it day by day. I actually spend most of yesterday in bed with small bouts of vertigo. I wasn't prepared for that.

      I've had Gent injections x2 7 years ago in my ear with the shunt for drop attacks and it did help with that. I rarely have vertigo if I keep the aural fullness under control. Prednisone is the only thing doing that for me. I don't see myself ever getting off it. I have NO evidence of autoimmune disease but docs feel I have an autoimmune component. I don't know. I'm the only one in my family like this.

      Margie

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    4. Sorry, my mistake! I wasn't paying enough attention when I read your post, I guess.

      I'm glad you are doing better. I also had the dexamethazone injections for awhile, although honestly I barely remember it now. I don't recall that it did very much.

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  28. I've had Minieres for many years now. Eventually I lost almost all my hearing in my left ear. (The effected ear.) I've been taking valium for the vertigo. I fortunatly only have "episodes" 3 or 4 times a year. However the tinnitus has become unbearable! My ENT wants to try the Gent injections. He told me that it would throw me into a full blown Minieres episode that could last up to a week. Sounds like a living hell.
    My question is...will it help the tinnitus? I realize my hearing will never return. Tried a hearing aid with no success. Has anyone ever suffered a Min. episode after any injection? I'm really on the fence over this, but without having huge problems with balance & vertigo, is it worth going through?

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    1. Anonymous, if your hearing is almost gone, it's worth trying the gentamicin.

      When I did it, it took seven or maybe nine shots before it took full effect (I forget now the exact number of shots). The last one finally did what you describe... I was hardly able to walk without feeling my way along a wall, and I was sick as hell. It lasted for about a week, and I started vestibular rehab therapy.

      I have to say that I felt really good for a few weeks after I began the VRT. But unfortunately I am one of the very few people whose vestibular nerves regenerate, and I began having attacks again. That's when I decided to have the labyrinthectomy.

      For many, the gentamicin shots work, and with vestibular rehab therapy, you will be able to get back to a more normal life, if you're lucky.

      Grill your doctor about what to expect, what the risks are, what the prognosis is. I think Meniere's patients need to gather as much information as they possibly can. Knowledge can give you some peace of mind in a largely uncontrollable disease.

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    2. Gent will not help with the tinnitus.

      If most of your hearing is gone, you really have nothing to loose. It might help knock out the vertigo. Frankly, I think one attack a year is too many.

      When I had my gent shots, I was only in vertigo for maybe a few minutes, not even long enough to make me sick. I did 2 shots in one year and both were the same. No big deal!! Maybe your doc is just trying to paint the worst possible scenario.

      The only thing I've found for tinnitus was valium and an ipod with symphony music....and going to a happy place. :) You might ask doc about neurontin (various doses) or seroquel at low dose at night. Seroquel at lowest dose is a powerful antihistamine, so you get that benefit plus it helps you get sleep.

      Margie

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  29. Thanks so much for the reply. My MAIN problem is the 'unbelievabley aweful" tinnitus!!!! Not only don I have a constant BUZZ, I also (for lack of a better discription) have a chimeing/door bell like sound when I move my jaw. Which is all the time. It's like a doorbell going off in your head that you can't turn off. I'm about ready to go round the bend!!! Anyone have suggestions fo the tinnitus? Thanks to you all. Tim

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    1. Tim, it's my main problem too, bilaterally. Mine also pulsates with my heart beat. It sometimes escalates to what sounds like organ music and tuning forks with the constant buzz (OK, jet engines) and then my mind wants to put a tune to it...making me more crazy. Then it changes again. I start to hallucinate about sounds...It's nuts...YOU are NOT! I've been like this on/off for over 20 years. It will get better and you will have good days. You must have anxiety(it makes it worse) under control and valium helps, otherwise you get caught in an ugly cycle. And I realize that is difficult when you have NO PEACE! Try to reduce your stress if you can. I had to go part-time 14 years ago. Use and ipod when you can so your not constantly focusing on it and stay away from quiet environments. Look into Tinnitus Retraining Therapy...I personally don't want to spend $10 grand on it to put more noise in my head but it has a high success rate, so I've read.

      Right now, rTMS is not approved in the US but there are studies ongoing. Check into Clinical Trials.gov.

      I get an extra jolt of buzzing that nearly puts me in vertigo just swallowing. I don't know about the jaw movement.

      Hugs through the computer!!! Keep writing. Hoping to be helpful here. Seroquel really helps me cope. If your vertigo is under control, I wouldn't rock the boat with an injection. That's just my experience.

      Margie

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    2. There are two supplement blends I know of that are said to help with tinnitus: RingStop and Quietus. I've tried RingStop and thought it did help a bit. Haven't tried Quietus.

      There are four individual supplements that can help with tinnitus, too: Zinc, Melatonin, Gingko Biloba, and B12.

      Have you tried the dietary route, Tim? Cutting down on salt, caffeine, alcohol and other stimulants is supposed to help. I've recently gone to a whole new lifestyle approach when it comes to food, so I'll be interested to see where that gets me. I'm also exercising more. I figure all of this will help.

      Tinnitus has never been my biggest problem, although I do have it in both ears. The left ear (Meniere's, deaf) has a low roaring sound that's pretty constant. The right ear (still OK) produces a higher ringing sound. Both are somewhat annoying but not life-altering.

      I hope you find something that works for you.

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  30. I was officially diagnosed with Meniere's last week by an EN&T Specialist. I started having the tinnitus a few months ago, then the "plugged" feeling (both in right ear) started on 3/1/12. Thought it was a wax plug, but our nurse at work saw nothing. On 3/3, had first attack of vertigo, and went to Urgent Care. They did CT scan, saw no issue, and said inner ear infection, take a decongestant. On 3/4, had such a bad attack of vertigo, my wife called EMS. Hospital gave the BPPV diagnosis, which my Dr initially agreed with, and he told me it would go away within a couple of weeks. It's been over a month now, my Dr did an MRI (no issue seen) and sent me to EN&T Dr. Trying diuretic/low sodium treatment, but still no change. The EN&T said if it didn't work after a week he would begin injections. While my dizzy spells haven't been as severe as they were the first few days, they have been persistent, from 2-6 per day, and more often than not lately, accompanied by nausea. The tinnitus is constant, louder at times, quieter at others, but always there, and the "plugged" feeling is there more often than not. Hearing test said no significant hearing loss, yet.
    Anyway, as I said, I believe the first injection will be tomorrow. One question I do have is, once the attacks diminish, is driving an option, and is operating my machine at work (a lot of climbing up on and reaching down into and crawling underneath involved) an option? I have a feeling my employer won't be very accommodating when I'm in the middle of a lengthy brand change or maintenance work, and I get hit with an attack and need to lay down for a couple of hrs.

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    1. Had my first Decadon injection yesterday (4/12/12). EN&T Dr. had me lay on my side and used numbing drops. After about 10 minutes, he came back in and suctioned out the drops and gave me the injection. While I didn't actually feel the needle go through my ear drum, I did experience some pain during the course of the injection. Went about our business for the evening, just experienced a mild pain. I woke up at 4am this morning and couldn't get back to sleep, and was feeling dizzy. When I finally got out of bed at 5am, the dizziness had subsided. I took my combo of BP med (Lisinopril), Diuretic (Triamterrene), and Meclizine about 5:30am. At 6:15 the dizziness recurred, and about an hour into the spell, the nausea returned. Curious to see how the rest of the day goes..

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    2. Don, if I remember right, there could be some dizziness right after the shot, because the additional liquid in the middle ear added to the pressure. Your experience sounds like exactly what I remember regarding the actual injection.

      I found, however, that if I warmed up the syringe with the decadron in it while we were waiting for the numbing cream to take effect, it helped lessen the discomfort during the injection. My doctor would fill the syringe, then let me hold it wrapped in my hand to bring it to body temperature.

      I hope the medication helps you. It did help me for awhile, and maybe it will help you for longer.

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    3. My spell lasted for about 4 hrs. Not a severe spell, but the nausea hung around for a while. I did check my BP during the height of the spell and it was normal, no drop off in BP, so I really don't believe the combo of my BP med & Triamterrene was an issue. The ringing is non-stop still, but I haven't experienced the fullness to the degree I was prior to the injection. My EN&T Dr. did tell me nothing is guaranteed as far as the injections working, and he has had a high success rate of the Meniere's patients he has treated thus far, but he also told me his worse case before me was a woman that had about 3 attacks per week. Mine are anywhere from 2-6 per day. Outside of the first few days, my spells haven't been as devastating as I've read from other's, but there are times where I need to lay down and close my eyes a while. My EN&T also told me the attacks will never be completely gone, that it could be a year before my next one or it could be a few weeks.
      My biggest concern is whether or not I'll be able to return to work. I work in a paper mill, and the machine I run require's me to be climbing up on it, reaching down into it, and crawling underneath it. I want to be able to return, but if I'm going to be experiencing attacks, even sporadically for the rest of my life, it doesn't seem to be too safe of an idea to go back to my regular job, nor do I believe my employer would want me back under those conditions. If anyone has any input on this concern of mine, please fill me in.

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    4. hello don
      one of the saddest part of menieres is that is a disability, hence it does limit the amount/type of work you can do.
      you have to be looking into your diet, and over time you will find foods that trigger attacks. (start with no gluten and give up dairy products).
      on a good note,it seems you are new to menieres, and for alot of people menieres passes and is just a stage. only a small % have it for years and years.
      stay positive, always have fresh air, and do your cawthorne cooksie exercises.
      go for a massage (i like cranial osteopath).
      basically try and figure out why your body is reacting this way.
      secondary problems like migraine, sinus, asthma, diet intolerences etc have to be dealt with.
      ask your doctor about sac decompression, and if he think it will be worth it.
      there is a wealth of info on here, read all the threads and try and pinpoint some stuff thats relevant to you.
      dont panic as most of us have kinda dealt with the big attacks through diet, meds, ops and lifestyle changes. what most the long term sufferers suffer from is the constant unsteadiness.
      regards
      ali

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  31. Hi Don,
    Sorry about your sitiation. Mineries is a horrible diseise to have to live with. I hope you read this BEFORE the injection. It's my understanding that an ENT Dr. will only do injections if your hearing is already almost completely gone with no chance of it coming back. I urge you to do a search and find out more about this. The vertigo can be treated (with varying degrees of success) with valium or antihistamines. Injections should be one of the last things they try. It sounds like your ENT is going way too fast. Do your research before you go ahead with the injections!!!!

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    1. Anonymous, if Don is getting steroid injections, that should have no impact on his hearing. It's gentamicin injections that can cause hearing to degrade, and you don't want to do them unless you've already lost substantial hearing. But the steroids shouldn't do any harm and are worth trying, even this early in the game. I began having decadron shots soon after I was diagnosed, and they helped for awhile.

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  32. Hi Don,
    I would definitely contact the company's HR department and tell them about your health situation. I can't believe that they would want you to work around any machinery if you are going to have an attack.
    YOu might also want to have your doctor write a note verifiying your condition.
    good luck and let us know how things are going.
    David

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    1. I agree with this completely. Don, I hope you feel better soon, and STAY SAFE!

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  33. I'm having my first Gent injection on Mon. My ENT wants this over steroids. Are there many side effects after the injections? What should I expect.

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    1. For once, I would question the doctor on this. But first, I have to ask: What is the state of your hearing?

      Gentamicin is quite effective, but it is oto-toxic. There's a good chance it could damage your hearing in the ear that receives the injection, so most doctors won't suggest it unless you have already lost a good deal of your hearing in that ear.

      The steroids, while not as effective as the gentamicin in treating Meniere's, do no damage to your hearing. Are we talking about injections or oral steroids? Oral steroids have many side effects; injected steroids, none that I know of.

      So, if you have already lost most of the hearing in your Meniere's ear, the gentamicin is more likely to help. But if you still have most of your hearing in that ear, I would try the steroids first, because they are less likely to do harm. Unfortunately, they are also somewhat less likely to be useful.

      Does that help?

      Oh, regarding gentamicin shots and their effects: If the shot destroys your vestibular nerve on the first attempt, you will feel like you are having a bad attack of Meniere's for several days. You could have vertigo and nausea and be very off-balance. But it can take awhile for the shots to work. For me, it took about seven injections for the gentamicin to work. The shots were spread over several weeks.

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  34. Thanks Peggy. That does help. I've had Mineriers for many years now. My hearing in the effected ear is gone....never to return. I was also warned about the sickness afterward. However I was under the impression that I'd only need 1 shot untill I read some of these statements. I sure hope 1 does it. Thanks for the info. Timmy

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    1. Skipping the steroids makes sense, since your hearing in that ear is gone. I'm sorry you've reached that stage. Even if the first shot doesn't do the trick, it isn't as terrible as it sounds, unless you are like David and the shots actually hurt. Mine didn't hurt at all. The idea of it bothered me more than anything else!

      One shot might work, but it depends on how strong a dose they use, as well as your own physiology. And I found that vestibular rehabilitation therapy helped me walk and drive more confidently after the final shot. When it does kick in, you will need a few days to adjust. I walked into my doctor's office leaning on the walls to stay upright when the shots finally took full effect. You might be surprised, though, how quickly your body can adjust.

      Good luck!

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  36. I think that the reason my gent shots hurt(all 6 of them) was that the anesthesia didn't have time to numb the area. In fact one time I wasn't even given any anesthesia.
    David

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  37. Hi all,
    On my 3rd day after my first decadron injection. If it's done anything positive at all, it's been to lessen the intensity of the dizzy spells a little bit. I haven't slept for crap since, nausea seems to have increased, I get these spells where different parts of my body have a jolt or maybe spasm, I have a decent amount of discomfort in and around my right ear, and I want to eat constantly. I also have noticed more and more lately that the ringing has ratcheted up as has the fullness feeling in my left ear, and my balance seems to be off more as well.
    As I said before, I did try lowering sodium, I still take triamterrene and meclizine, and am on lisinopril for my blood pressure (I monitor it daily). I still do have dizzy spells daily. My EN&T said it may take 3 injections one week apart to fully work. I realize that it's only been a few days since my 1st injection, but he did tell me I may feel well enough after the 1st one that I may call him and tell him I don't need anymore. I'm not buying that, and am hoping that he is right. He did say his previous patient had it bad and only had 3 episodes per week, where mine is multiple times daily.
    Does the reaction to the injection sound familiar to anyone else? Has anyone experienced what I am?
    Thanks to David, and everyone else who contributes. It's nice to know I'm not the only one..and my Wife has been awesome throughout all of this..

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  38. Hi Don,
    It really sounds like you are going through a tough time, one thing to consider is that the reason you are going through all this is because the medicine is working. I remember one of my doctors saying something similiar to that after my gent injections (although it was a couple months before I had any reaction to the shots)
    I hope things get better soon
    David

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  39. I'm curious and would like to hear from other reader's/poster's on returning to work with Meniere's. I have a feeling that my employer won't want me back (understandably so) as my job entails operating a machine, or driving a lift truck. Has anyone else been able to do this type of work? I really would rather be able to work vs. rely on Soc. Sec. but, it will be what it will be.

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  40. Hi Don,
    It is really hard to say. It would probably be best to talk to your doctor about what type of work you can and can't do.
    David

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  41. I just had my 1st Gent injection on Mon. 4-16 & as of now, 4 days later, I've experienced no side effects at all. Accoring to my ENT that's not such a good thing. He says that you know they are working when you DO get sick. If this hasn't worked, we'll try it again in a month.
    Has anyone had any experience or knowledge they could share on this? Thanks gang.

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    1. It doesn't always work the first time. Don't lose heart, Timmy, it took many shots for the gentamicin to work for me. It can depend on the dosage, and of course it depends on the patient. You will know when it works, believe me, but be patient.

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  42. Thanks Peggy. It seems quite odd when your goal is to "get sick" however It's my understanding that that's how you know It's working. I go for another injection in a month. We'll see.
    It can be so frustrating when there are so few treatment options, and results vary wildly from patient to patient. I've been dealing with this disese for years now. Left ear only. (Thank God!)I eventually lost all my hearing, never to return, had to give up my career I loved as a freelance stylist,(couldn't handle all the flying), I have that "plugged" feeling all the time, The tinnitus is now constent, & the Vertigo episodes are so severe that I can only raise my head up about 2 feet from the floor without vomiting profusley, & they can last for hours. Needless to say...I spend a lot of time lying on the floor.
    Sorry. I'm venting, but I'm so glad I found this website where you can do that and others "GET IT" cause they're right there with you. Just gotta try to stay positive & retain a sense of humor.
    Thanks for listening to me ramble. I wish the best for all of you out there. Timmy

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    1. There were many shocks and very confusing things along the way for me, too, Timmy. You aren't alone in this. What you need to know about the gentamicin is that the goal is to destroy the vestibular nerve, because that is what's causing the vertigo. That will make you sick for awhile, but it should make the vertigo go away.

      Unfortunately, the vestibular nerve is what governs your balance, which is why you will become quite sick when it is finally destroyed. About half of your balance system will be gone. But that's OK.

      The reason why they can get away with doing this is that your right vestibular nerve will remain healthy and adjust to take over most of the functions of your defunct left vestibular nerve. This will take a little time, and you can help this process along by going through vestibular rehab therapy. That will encourage the right vestibular nerve to speed up the adjustment process.

      In addition, your eyes will take over some of your balance functions. Balance is governed mostly by the inner ear, but also by touch and vision. The vestibular rehab exercises include exercises for your eyes that will help them and your brain figure out how to take care of your balance without that left vestibular nerve.

      What they don't tell you is that you might have some ongoing residual balance issues. I do, because my right ear hasn't completely adjusted and taken over all the balance functions. But it is still better than being dizzy and sick all the time. Like you, I would be on the floor for hours, unable to get up or move. It was not a life worth living.

      Good luck. I hope things get better for you very soon.

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    2. Thanks Peggy. Your very knowledgable on this subject. I appreciate your input.

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    3. I don't know about that, Tim, but I've been around the block a few times with my own case of Meniere's and spent a LOT of time researching it online! I hope the information I've scraped together is helpful.

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  43. Had my third Decadron injection today. My EN&T Dr. says that the plan is to have the injections work (he says he's never had to do more than 3 to anyone he's treated) and get me off the meclizine and the valium. Has anyone been so fortunate to have the injections be successful AND be off the other drugs? Just curious..

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  44. Had my 4th Decadron injection this past Monday, it's now Thursday, and I've had 3 dizzy spells today, including one of the worse attacks I've had in a while. It seems for the most part, that all the Meclizine, the Triamterene, and the injections, have helped to diminish the severity of the spells but as for any of the other issues, nothing.. For example, the other day, I bent down to pick up our dog's leash to put her out, and I just about fell right over. Luckily I was able to grab the door casing, as has been the case at other times when I just start to fall, but one of these time's I fear I won't be so lucky. Where do I go from here. As I put in a recent post, the EN&T I'm going to now firmly believes that the injections are the only way to go, and is convinced I'm making progress, and will eventually be off of the drugs (Meclizine, Triamterene, and Valium). As much as I want to be totally positive about everything, and yes, I know it's early (only a little over 2 months now), but it's hard to see things improving that significantly. I already know I won't likely be returning to my previous job running a large machine, and I don't really know else I will be able to do.
    Anyway, I know there are other's out there in similar or even worse situations. At least I'm upright and breathing, I have an amazingly supportive wife, and a few friends that don't look negatively at me. Thank you for listening.

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    1. Hi, Don. A couple of thoughts:

      First, don't lose heart. I know how hard all this is, but since you are only two months into this, I have a better understanding of why your ENT might want to hold off on more extreme treatment. It's possible you will go into remission. When I turned to the gentamicin injections and then surgery, it was because my MD was intractable... there had been no improvement for more than a year.

      Second, I wanted to share that it's important to start consciously working on ways to safeguard yourself. For instance, if you get dizzy and almost fall over when you bend over, stop bending over! Find another way to pick up the dog's leash and other similar tasks. Hold on to something when you lean down, or squat instead while using one hand to stabilize yourself. I learned awhile ago that I can no longer squat on my heels without falling over backwards, so I don't do that any more without hanging on to something.

      It takes time, but you can learn to do things differently to avoid problems. I still have plenty of moments when I move in a certain way without thinking first and find myself reeling to get back on balance, but I'm making a real effort to learn what I can do and what I need to be more careful about. You need to train yourself to take extra precautions.

      I hope your doctor is right, and that you will go into remission and be able to stop taking the drugs. It does happen. But I still think a second opinion is a good idea.

      Hang in there. It's a total PITA, but you have support, and you're not alone.

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  45. Had the strangest sensation twice within a short time of each other.. The ringing got louder than normal, then my ear started getting the full feeling, then a whoosh sound, then a few minutes later another whoosh sound. Had been having a mild spell while this was happening, but that's the first time I noticed a sound like that. My nausea was worse than normal today as well, even without any dizziness. Anyway, seeing EN&T again Monday and discuss a Neurotologist to see what else we can try.

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