Gentamicin: A Complete Experience

I will definitely keep you informed. I also have profound hearing loss in my bad ear. I am 67 and the hearing loss occurred quite suddenly 40 years ago. I learned to live with it but the vertigo that started 3 years ago is something that I have a difficult time dealing with. It's hard to live my life if I am confined to my bed with severe debilitating attacks most of the time. I am fortunate that my other ear is healthy and functioning normally. I hope to have good results with the gentamicin injection, which is scheduled for March 23rd. I will follow up when I have more to share. Thank you for the well wishes. I hope everything turns out well for you with your decision.

 

After much thought, research, and prayer, I am 99% sure I will go with the labyrinthectomy. I am so very tired of feeling as half a person. My qualtiy of life is so limited. Everything I have read says this surgery is 95-98% effective. Since the recovery is 6 weeks for both the gentamicin and surgery, I can't got through it twice should the injection not repond as well. At 72, I only have a few good years left!! LOL Do keep us informed. I have your March 23rd injection on my calendar! Best wishes that it goes as you hope.

 

I just finished my injections about a month ago. I haven't had any vertigo since, but I have had a couple of times where I felt off, like I was about to spin but it didn't. Usually when this happens, if I move my head up and down I get a weird whoosh sensation (Sorry its hard to explain). I was wondering if this is somewhat normal only being a month after the shots?

This is my 2nd time getting the shots. The first time I went about 3 years before the vertigo came back. Of course I didn't keep track of how I felt rehabbing from the injections back then. I do remember having a mild dizzy spell a month or 2 afterwards though. Just asking to see what others went through.

 

And of course the next morning I get an episode with spinning. Its been 5 weeks since we finished the injections. I know the injections can cause vertigo for a week or 2 afterwards, but can this happen 5 weeks out? It should have destroyed the vestibular hairs by now, right? Man, sometimes it feels like i'll never be rid of this. I'm hoping I can eventually get the labyrinthectomy or nerve section eventually.

 

I had vertigo for many weeks after my 3rd gent shot. I had my first one in 2013, then 2015, and last one in 2018. For some reason, the last one took a lot longer than I anticipated to get back to normal..probably months. Eventually things settled down and I've had very few drop episodes since then. I hope things have improved since you posted. If things get bad again, my Dr. has asked me to consider the labyrinthectomy.

 

It has been a while since my last post and I wanted to provide an update after receiving Gentamicin injections.

I received my 1st injection on April 28th, which was almost 5 months ago. Prior testing confirmed that I had lost 85% of my balance function and hearing in my left ear so my doctor and I were hoping for a mild recovery/transition period. However, that was not the case. It was on day 7 after the injection that I woke up to severe dizziness and terrible imbalance that made me feel I might fall with every step. These symptoms remained for a solid week along with brain fog, moderate nausea (Zofran/Ondansetron worked great for this) and severe nystagmus. I consumed mainly soup and crackers, or grilled cheese, scrambled eggs during this time, and spent a lot of time resting in bed. On day 8, the nausea had dissipated and my appetite returned, and the brain fog was a little bit better, and my balance was improving little by little. Three weeks after the 1st injection I was feeling a lot better but my vision was still concerning due to pronounced nystagmus. The imbalance improved slightly with each day, as did the brain fog. I used a cane to help me with the imbalance.

Four weeks later on March 19th, I had my 2nd injection. This caused a flare up of the above mentioned side effects but they were much milder than before, and they only lasted about 4 days. After about 6 weeks the brain fog finally lifted. I truly felt I was on the road to recovery at this point, even though I was still not able to drive due to nystagmus. My ear went through several phases during the recovery process. When Meniere's was active, I would feel or sense a 'trigger' or 'click' going off in my head, followed by a wave of severe vertigo. After the Gent injections, I went through about a month of having the trigger and wave sensations but it lead to nothing. These were just little reminders of how terrible Meniere's is because I would always brace myself when I felt the trigger or 'click' sensation and then the wave..., and then I would feel such relief when nothing happened. Sometimes I would have these sensations 6 to 10 times a day, however, it has been over a month since I have experienced these episodes. I felt safe enough to begin driving again in late July, about 3 months after the 1st injection. I still have a hint of nystagmus but it is very seldom.

It is now almost 5 months since my 1st Gent injection. I am so grateful that I somehow found the courage to go through with these injections because they have truly given me my life back. I was very hesitant to do so for several months and just had to force myself to give in. I thought surely the injections cannot be worse than 8 hours or more of severe rotational vertigo that I experienced 3 to 4 times a week. I wanted to try to put an end to that madness, and the Gentamicin injections helped me do that. During the recovery/transition, I had to keep my eye on the prize, which is what gave me the hope and strength to keep on keeping on, One day at a time, One foot in front of the other. Meniere's stole 3 years from my life and I can't even describe the amount of depression that came along with that. I now feel like a new person, better than I have in years. This is my experience that I wanted to share in case it can help someone else. For those who are still suffering from Meniere's, my heart goes out to you. I remember so well how horrible it is, and I pray that you are able to find something that will help you. Just keep trying. Don't give up.

 

Good news Susan - very glad for you.

 

I have been thinking about you and wondering how you are doing. I hope you are feeling better.

 

So happy to hear of your success with this!

 

Hi Marc
Thank you for describing your journey in such a detail.
I hope you are still doing great.

My long story short: MM diagnosed in 2014, tried everything ( diet, betahistine, JOH etc) plus steroids injections. No success
In 2016 had EDB surgery which was a great success until June 2022. A vertigo attack came which left me devastated.
Until the beginning of August I had 4 attacks.
I saw ENT two days ago and I was given a gentamicin injection.
At the beginning of day 2 I stared feeling heavy in my head, today I have been feeling even more ,off’, nauseous plus have had nystagmus. Managed to go to work though.
I have been doing physio exercises for three weeks now. It’s the same exercises that saved my life 7 years ago, pre surgery , helping me go back to normal. I hope this time as well they will help me go back on my feet in no time.
I pray that the shot works but time will show.
Thank you for listening.
M.

 

* I asked for a laby but the answer was negative. Unless we try gentamicin shots first I can only dream about the surgery.

 

Marta,

I had a Gentamicin injection in Apr 2021 and again in May 2021. It took a solid 3 months before I was even able to drive again and start feeling more normal. However, it took about 6 months for the nystagmus to subside almost completely. Now it's been almost 1-1/2 years since the injections and every once in a while I will have a feeling of unease that reminds me of my past with Meniere's, just a subtle dizziness with mild nystagmus that comes on quickly and passes within seconds. I've only had a few episodes and they have all occurred in late evening when I am tired.

I have not had a vertigo attack since the injections, which is wonderful since I was having 2 to 3 severe attacks a week that would last for hours upon hours. I still walk somewhat out of balance but it's not bad, I have control and do not feel like I am a fall risk. I feel better than I have since June 2018 when I had my first Meniere's attack that felt like I had been hit in the back of the head with a sledgehammer. This is when I received a diagnosis of Meniere's in the hospital ER. My Meniere's experience has been quite a journey but I am pretty much back to normal. I still watch my sodium intake (no popcorn). I was contemplating surgery as well but my doctor wanted me to try Gentamicin first because it was the least invasive. I am so glad I did because it gave me back my life. MBach's experience and his willingness to share it on this forum gave me the courage to move ahead with the Gent injections.

I hope you continue to have improvement in the coming months. I highly recommend it as a treatment for anyone with Meniere's. Good luck, Marta, and Best Wishes.

Susan

 

Susan
Thank you for taking time and writing about your experience.
It was important for me to hear that it took months to other people as well, before going back to normal. I think the worst thing is to lose hope and stop fighting. And this is what happens on bad days.
I have been 2 months post gent injection and the first good news is NO vertigo yay. What I am struggling with is oscillopia - bouncy vision. Having said that I have made so much progress since the beginning. I have been doing physio exercises a few times a day, every day.I don’t think I would have been where I am now without them.
The funny thing is when I am walking and looking at something that is just in front of my eyes eg phone in my hand, a letter etc, my vision is just perfect. No bouncing whatsoever which was not the case at the start of my journey. That’s why when I am walking I tend to look at my hand from time to time or watch to give myself relief.
Thank you one more time for your post.
All the best

 

During recovery I experienced the bouncy vision every time I moved my head, even slightly, as if my eyeballs were rolling around in my head. It did seem like it might last forever, and it was the last side effect to go away after about 3 months, perhaps a bit longer. Just give it more time. The time needed for healing caused me to put off the procedure longer than I should have. The reward after healing is so worth it. Good luck. You are in my thoughts for a full recovery.

 

Hi All,

looking for a little reassurance. Peoples accounts of what happens during gent treatment typically is vague about the ‘compensation’ period stating it is unpleasant but not specific.

after 4 months of vertigo attacks every 2-4 days coupled with drop attacks in between I made the decision to have gentamicin injections; I am having 3 injections over 3 weeks and have just had my second.

I am having waves of dizziness, horrendous headaches, nausea and retching, double vision (comes and goes), periods of non-rotational vertigo (things feel like they are moving but my vision is not moving) and my ‘good ear’ aches at times. I am off balance but wouldn’t say walking is a challenge.

I am also struggling to sleep due to the severity of the symptoms at times.

does this sound fairly typical with anyone else’s experience?

thanks

 

Terratag,
What you are describing is close to how I felt during my recovery from Gent injections. I had a enormous wave of dizziness that did not let up for maybe 4 or 5 weeks and then it started receding very subtly until I was back to normal, Meniere's free. I don't remember having headaches but I typically never have headaches anyway, so you may want to talk to your doctor, as he may be able to prescribe something to help you with your headaches and insomnia. I also experienced nausea the first few weeks after my 1st injection but was given Zofran to help me during those periods.

It's been almost 2 years since I had my injections so my memory is fuzzy but I do recall feeling like the symptoms from the Gentamicin might never end. I spent a lot of time in bed just resting, being kind to self. Also, my symptoms were extremely severe after my 1st injection, but much less severe after the 2nd injection. It took about 3 months after the 1st injection before I was back to good health and could drive again. As your recovery progresses, you may not realize you are getting better. In my experience it just seemed to go on forever until I realized I was a little better every few weeks - It is a progressive recovery. I kept a journal that I updated on a weekly basis so I could recognize the subtle improvements that were taking place. The nystagmus (eye movement) seemed to be the last symptom to leave.

I am so thankful I was able to become free from the debilitating vertigo attacks from Meniere's. I hope the Gent injections work for you so you can get your life back. I will keep you in my thoughts and prayers. Just be kind to yourself and give yourself the time needed to fully recover.

Best wishes!
Susan

 

Terratag
I had one injection only and I still shiver when I think about the first weeks of recovery.
For the first four days I had a nonstop nystagmus. I could not close my eyes as I would start vomiting. To finally being able to close my eyes took up to 4 hours- bit by bit, open and shut, open and shut. It was like a transition for the brain from being used to open eyes to eyes shut. After a night’s sleep it was a challenge to open my eyes. And again the moment I opened my eyes (still severe nystagmus) I vomited. I had to do it slowly for a few hours for the brain to get used to eyes open. Imbalance was present but it was not an issue. I could not eat at all.
I had no dizziness. I don’t recall headaches.
What has been present since day one is oscillopsia (bouncy vision)
It was horrendous at the beginning and it has been gradually getting better. Four months after the shot I started driving. I returned back to work two weeks after the shot. (I work with 4-5 year old children) I thought I was at around 80% feeling good but now I know it must have been around 30-40% I rushed it and I regret it now.
I see everything described above as a nightmare. A nightmare worth the suffering as I have had no vertigo whatsoever.
i forgot to mention that I have been doing physio exercises since day 5 (nystagmus gone)
You are at the beginning of your journey to recovery. Be kind to yourself and try not to stress.
Thinking of you
Marta

 

I am so glad you are better and Meniere's is in the past. The recovery is very difficult but the prize of getting your life back is worth it. I would do it again if I had to because Meniere's is just awful in so many ways. Take care Marta, and thanks for sharing.
Susan

 

Thanks for responding

After my third injection I’ve found that I am now dealing with near constant vertigo and nausea while other symptoms have calmed - not the typical rotational vertigo we all know from an attack but instead just a subtle movement in my field of vision - does this sound expected?

if I keep my head still I am largely comfortable but head movement brings on bouncy vision / vertigo that settles as soon as I am still - again I think this is typical?

Thankfully I am sleeping much better with the dizziness having passed for now.

cheers