If there is one thing that seems to get more comments on my blog than anything it is questions about the gentamicin injections. I had the procedure done in the summer of 2008. I had 4 injections and severe balance issues for about 2 months afterward. A week ago when I saw my doctor he asked if I wanted another injection. I am not ready at this time for another one, but I can certainly say that the original shots were helpful.
The first question that a lot of people have about the gent injections is how they will feel after the procedure is done. I felt okay right after the shot were admininistered it took a few weeks, I think, before my balance went haywire. And remember that everyone reacts differently, but I have read about others who have had similar experiences.
Here is an email from Justin who was enquiring about how his balance would be after the injections.
Anonymous said...
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
Another question is how is my hearing going to be affected. After a year and a half my hearing has gotten a little worse, especially my ability to comprehend what is being said to me. The way I feel is that my hearing in my bad ear is probably going to get worse anyway whether I had the injections or not. As for the tinnitus, that isn’t a big problem for me, but for others it is constant misery. I don’t think that the tinnitus I helped by the shots. If you have any information or experiences with gent injections and tinnitus let me know. Here is an email from someone who has had the tinnitus for 8 years and is currently going through the gent injections.
Bry writes...
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
Another question is how painful are the injections, well for me they were very painful. Maybe it is just me, I don’t know but they hurt. But you have to do what you have to do to ease the discomfort of meniere’s.
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Sunday, February 28, 2010
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16 comments:
I had my first gent injection three weeks ago. And I searched the web for experiences so I would know a little better what to expect. So, in return, here are my experiences:
David, you're not the only one who found the treatment painful. The eardrum is numbed, and I was told that the gent itself would tickle a bit, but for me it was more a strong burning sensation. After five minutes or so it started to wear off, but I did take a painkiller when I got home. If I have to go for a second treatment, I will take a painkiller before I leave for the hospital...
Before the treatment I had attacks on a daily basis, sometimes more than 1 each day. The first three days after the treatment I had up to nine attacks a day. At the fifth day I started feeling out of balance and felt really sick. It wasn't the same as an attack but more what you experience after an attack. The first two days of that I had to stay in bed. It took about a week to pass, but since then I haven't had a single attack for 10 days now. That's more good days than I had in the last 6 months!
I'm not sure about hearing loss. My ear was very bad before and is still nearly deaf... Also the tinnitus stays but I'm more or less used to that.
I started working again today, after 6 months of staying home, and so far I'm quite happy with the result. It's of course too early to tell if it will be a lasting effect, but at least for now I feel a lot better.
The injection did cause an awful burning sensation and then it seems that the medicine somehow went into the back of my throat which nearly made me gag.
After the first injection I took something to make me relax, it helped a little but not enough.
It took me a little longer for me to recover from the injections but I am glad that I had them.
I do wish that doctors would be more upfront about how painful this injection is.
thanks for the comment
and stay in touch
David
On March 1, I had my first gent injection. I personally thought it was intensely painful, luckily it was only for 30 seconds or so. I was fine after the injection, but 3 days later I quickly went downhill. It started with lightheadedness and nausea. It developed into severe dizziness and being off-balance. All I want to do is sleep. I have become so tired. It has been 1 week since the injection, and I have felt aweful since Thursday. I am currently talking myself out of the second injection, fearing this feeling of sickness. The depression is back, and I just want my head to stop feeling like a swaying fishbowl. Can anyone help cheer me up? dpetro324
In my case the severe dizziness didn't start till after the 4th shot and that took a couple months to get over. But I have to say that eventually it was worth all the pain and discomfort. I do feel better now then I did before the shots.
I certainly understand about the depression. Like so many others who have this disorder I find it difficult at times not be depressed. But the one thing that keeps my spirit up is the immense information about meniere's on the internet. I read as much as I can and I also participate in some of the meniere's forum.
you are definitely not alone.
Stay in touch and good luck
David
I had my first gentamicin shot 2 weeks ago. A few days after the shot, I felt great, and then the spells got worse. (I was told they might). I have not had any dizzy spells for 3 days, but I dont feel stable when walking. If I move my head, everything in the room moves. If I am still and move my eyes, everything is normal. When I walk, I feel like I am on a boat. (Little worse than that but thats the only way I can describe it).
I am wondering if anybody else has had this feeling, and if it goes away.
John,
Balance was a real issue with me after the gent injections, whether it was walking or driving. It took awhile to get over it.
One thing that helped me was VRT therapy. It helped me gain confidence in my balance again.
Stay in touch and good luck
David
I have had ringing in right ear since January 2008 and hearing loss developed slowly and has fluctuated. Tinnitus is 100% constant but I have learned to deal with it. Vertigo started in Feb 08 and probably had 10 sporadic attacks over the next 2 years that lasted anywhere from 30 minutes to 2 hours. Originally saw an ENT who was useless. Told me there was nothing that could be done. Fortunately did some research and got to an otolaryngolgist within a month who diagnosed aied. Until recently the hearing fluctuated between 60-80% and the vertigo was only in winter, and seemed to be triggered by altitude or to much air travel.
In April I went to see a new dr who dx MD. Unfortunately within the past month my vertigo took a turn for the worse and I had 2 "drop attacks". For those of you who have had them you know they are truly frightening. Fortunately I was at home and sitting down when both hit (3 days apart) but I can't imagine what would have happened if I had been driving on the highway. Also, I was lucky enough to have my followup apptmt with the new dr the day after the second attack. He strongly advised me to get gentamicin injections before I considered driving again. He has treated about 100 patients with gent for the past 10 years and had 95% success rate for stopping the vert, with a 20% chance that hearing could worsen. I was told that one injection might be enough and that I should expect to feel dizzy in about 3 days, that I would get progressive disequilibrium over the following 2 weeks, and that after that my balance should return over weeks 3 and 4. To me this seemed like a fair tradeoff for a chance to control the vertigo. I am almost to the 2 week milestone, and so far things have progressed as the dr said they would. For the first week I had 1 or 2 five to ten minute dizzy spells per day, so not intense vertigo and much shorter duration. Really quite easy to deal with compared to 2 hours of hell or the dangers of drop attacks. After the first week the dizzy spells are completely gone. In days 8,9 and 10 I felt very good, no dizzy spells and only slightly off balance. I am in day 12 and days 11 and 12 have seen my balance getting more and more challenged, as the dr had advised, but still getting around OK and just a bit "wobbly". In 2 days I hope to start to feel this taper off. I am really only a bit off balance, and have been able to work at my job throughout this, though I have been fortunate that I can control my schedule and have lightened it up to deal with this.
Frowm what I read I assume that I have been given a low dose gentamicin injection, and didn't realize the difference between that and high dose weekly injections, but have since read about the experience of others with high dose.
I was looking for comments of people who may have done low dose injections and what their experiences have been.
I am certainly hoping that this one injection will be all I need. It is very odd to be elated that I am feeling off balance, but since the dr told me that I'd know the gent was working if I experienced these symptoms I am feeling encouraged by feeling off balance. Now I just have to trust that I will start to get back to normal soon, and that it will be worth it. My hearing seems about the same though I have not been tested and the ringing also seems about the same, maybe even a bit less the past few days.
From what I read my case is not as severe as many. For the 2.5 yrs that I've had this, been able to deal with the hearing loss and live with the ringing. It is the vertigo that is the main problem and if I can get help with that I can deal with the rest of it. I am very active, bike long distance, exercise regularly and have been able to continue this except when the vertigo strikes. For those of you whose stories I have read, who seem to have to deal with this on a daily basis I can only say that my heart goes out to you. MD is a horrible condition and I hope that we all can find some relief.
Paul,
The only place that I have ever read anything about low dose gent is from Dr. Hains website
http://www.dizziness-and-balance.com/treatment/ttg.html
He seems to have had a lot of success with it. I would definitely check out his website.
It sounds like your gent injections are going pretty good, I hope they continue that way.
my first series of injections were in 2008 it was a month after the shots before I had a really big attack. Hopefully with a low dosage you might not have that really big meniere's attack.
Thanks for commenting and stay in touch
DAvid
David,
I did read Dr. Hain's stuff and it did make sense to me, I was hoping to find someone else who has been through low dose injections to hear their experience. I have been pretty wobbly the past 4 days, but I think it is starting to taper off for me which is what I was told would happen, so far, so good, though I wouldn't want to feel like this long term. I'm willing to trade 4 weeks of this for relief from the vertigo, and was led to believe that in 95% of cases this will eliminate the vertigo altogether. Seems too good to be true, although going thru this is no picnic, I wouldn't want to feel like this long term. I was hopin g to find someone who could corroborate a similar experience in the 4 weeks after the injection, and who could tell me if their vertigo had recurred after a low dose treatment. Thanks. Paul
Paul,
I will bring it up in an upcoming post. Hopefully someone has some info on it.
thanks for the comment
David
I am preparing to get low dose gent shots for Meniere's drop attacks and was glad to hear some of the comments made by other people. I have had Meniere's with vertigo for 6 years, I was diagnosed with cochlear Meniere's before that which is hearing loss, I have lost 98% of the hearing in my ear. When vertigo started a year later it was bad with more than 1 attack on many days, usually very sick and down at least 2 - 3 hours with each attack. Then I went a whole year with nothing, one day while thankfully at home I had a horrifying drop attack. Over the next year I had three more the last one was so bad I finally gave up driving. How could I put someone else in harms way? Now in order to get my life back I plan on getting the gent shots, I am really scared, I do hope they will help, the Dr.s don't seem to be able to give clear answers. Any encouragement would be welcomed. Linda
Hi LindaLu,
I hate that you have had to go through all this torment of meniere's for the last six years. Hopefully the low dose gent injections will help. I have read that low dose is more effective than the usual dose of gentamicin.
I can also understand your fear about driving, I unfortunately have had some bad attacks while behind the wheel, luckily no one was hurt. Right now I limit my driving to about 15 minutes and no longer.
One of the biggest frustrations about meniere's is that there really isn't any clear answers. It seems at times you have to drag the answers out of your doctor because they can't say much with any certainty about this disorder.
good luck and keep in touch, let us know how the gent injections went.
David
Hello David, This is Paul again, I just thought I'd give a quick update on my progress. I had my first shot in June and the process went about as the doctor had advised it would. Thankfully I have not had any vertigo since the shot. I do occasionally have short bouts of dizziness, but nothing like true vertigo and thankfully nothing anywhere near a drop attack. Really just a few seconds and it clears. Doctor told me it would be a year or two until we could know for sure whether the vertigo would stay away, so I am continuing to try to follow the healthiest lifestyle I can. So far, so good for me.
Hi Paul,
I am so glad that the gent injections are working for you. Hopefully the worse attacks are behind you.
Living a healthy lifestyle is a good idea for anyone especially someone with meniere's!
Good luck and stay in touch
David
All:
Thanks for the postings. I have had MD since June 2007. I have all the normal symptoms and have had continued hearing loss to 38%. From Dec 2008 through Feb 5 2009 the rate of attacks increased to roughly every 3-4 days. I then enjoyed 20 months of attack-free living. Slight ringing but ear pressure was quite manageable. In OCt 2010, I had a major attack that lasted 2 hours and left me dizzy for 5 days. Then on Nov 5 I had a fairly minor attack that I was able to sleep off in about an hour. The only problem is, I have never recovered from this attack. Everyday I feel wobbly and I have eye shifting and vision issues. My coordination is terrible and the ringing is pronounced. I have had 5 major attacks in the last 3 weeks but at least once a day I have some issues with vertigo. One big issue, my hearing dropped to 10% and has not returned. On nov 12th I had a Dextramethasone injection (I had 3 in 2008) but it did not help. Today, based upon my symptoms and low hearing, my DX and I decided it was time for alternative action. I received a combination shot of low dose Gentamicin together with a shot of Dextramethasone. I have my fingers crossed. I will keep all posted. Currently I am scheduled to receive my next Gentamicin injection the 1st week of Jan. As a reference, I live in the Cleveland area. My doctor told me to expect things to stay the same for the next 7 - 10 days and then to hopefully look for balance to return and light-headedness to decrease.
hi Pat,
i have also heard of others that have a period of attack free living only to have the meniere's come back with a avengence. but to have an attack that never ends that sounds horrid. I know that must be difficult!
I hope that the new treatment that your doctor devised will give you some relief,
thanks for the comment and stay in touch
David
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