I've received a lot of information about Menieres from this board over the years but sadly never had anything positive to contribute until now.
It's been a little over 2 months since a single Gentamicin injection completely changed my life in a positive way.
I am going to provide a very detailed account of everything I experienced over the past 2 months with the hope that it will provide some insight for those trying to decide what to do about the amazingly awful symptoms of this disease. As I found during my research, it's difficult to find information from those who are no longer suffering as they typically move on. I also hope to leave this entire experience in the past, but before I do, let me share my story.
I will first briefly describe my symptoms as well as what was tried over the years so you can compare with what you are currently trying.
Menieres surfaced after a rather un-eventful upper respiratory illness in 2007. Congestion settled into my left ear and never seemed to dry up. Nasal steroids didn't do the trick and the low rumbling tinnitus soon followed. This persisted for about a month until I had my first vertigo attack.
After visiting several doctors, the consensus was Menieres and I was promptly put on a diuretic. I also quite quickly began the John of Ohio regimen. I am quite diligent with everything I do, so I stuck with it for at least 6 months. I don't believe it provided any relief.
Vertigo occurred every month or so. This was full rotational vertigo. In my experience the worse kind. The heavy spinning would last 15-20 minutes followed by hours of dizziness. Valium really helped take the edge off. (under the tongue - 5mg)
I tried many things. NUCCA, 6 months of antivirals, TMJ treatment, diuretics, supplements, low sodium, etc. Nothing helped.
In 2011 I decided to try the Endolymphatic Shunt surgery at the House Ear Clinic in L.A.
Following this surgery, I no longer experienced full rotational extreme vertigo. But it certainly didn't stop the misery. I would still have frequent attacks of vertigo that I can best describe as side to side movement.
Prednisone helped to control the worst of it, but this is not a drug to stay on long term and it didn't help completely. But it allowed me to get through the day and even continue to travel. As soon as I weened off of it, vertigo returned.
I also tried betahistine which didn't help and then finally expensive hemp oil which I believe acted as a placebo for a short time but didn't end up helping.
In 2014 I began to experience drop attacks. These are sudden and very heavy bouts of quick vertigo lasting seconds but strong enough to throw you to the ground. I could no longer be trusted to drive. I am fortunate to run a technology business from home, but I was not helpful to my family at this point. It was time to do something definitive.
The first thing I tried was an injection of dexamethasone, a steroid, just to see if it would have an affect considering I responded so well to prednisone. With this I would see total relief for about a week and then a return of symptoms. I tried it twice. Same result each time.
Now I needed to decide which destructive treatment to pursue.
1. Labyrinthectomy - total destruction of the inner ear was completely out of the question in my opinion. If I leave the inner ear intact, I can get a cochlear implant later on should menieres develop in the other ear. Not worth the risk.
2. VNS - cutting the nerve works well but it requires intra-cranial surgery which carries some risk. This surgery also requires time in ICU and 5 days in the hospital.
3. Gentamicin injection - simple and quick procedure, some risk of hearing loss
Ultimately, the gentamicin injection sounded so simple compared to the surgical methods. I knew that all 3 would require rehabilitation, however the actual process of destruction with the injection was so much simpler and therefore attractive to me.
Before proceeding with the injection, I had a VNG test. I only had about 40% of my balance nerve function left. Menieres had slowly destroyed it. It is my understanding that the more function left in the nerve, the more profound the recovery. If you have 80% of the nerve left and suddenly destroy it, your brain has to work very hard to compensate.
MY EXPERIENCE WITH GENTAMICIN
I drove to House Ear's Orange County clinic from my home in San Diego. Yes, you can drive home after treatment without issue!
Laying on my side, a numbing agent is applied to my ear drum. This stings a little but only for a second. 30 seconds later a small syringe is inserted into the ear drum. I could not feel the insertion. Afterwards, the gentamicin is injected into the middle ear. There is a stinging sensation as it's injected, but again this only lasts seconds. Some of the solution ran down my eustachian tube into my throat. This also burned a little but only for seconds. It's best to try your hardest not to swallow to minimize leakage into the eustachian tube. The injection is over and now I lay on my side for 30 minutes with the hope that some of the drug will enter my inner ear.
I am told the inner ear doesn't always get enough of the drug which is why sometimes 2-3 injections are needed over time.
I had decided to do a "low-dose" treatment, meaning space injections out at least 1 month apart. This seems to lower the chances of hearing loss which is a potential side effect.
After 30 minutes I drive home. I feel no effects of the injection.
The Waiting Game
From all I read about Gentamicin, once it kicks in you'll know it.
Two days after the injection, I felt very off balance and woozy. This lasted most of the day. The next day it was gone and I had my doubts that the drug had done any damage that quickly. Turns out that this was simply a long lasting menieres attack. I believe the injection triggered it some how.
Some people say it takes 3 days, some 5, in my case it took 7 days to begin feeling the effects of my balance nerve being destroyed.
The Compensation Process
Once the gentamicin took effect, my brain had to figure out how to achieve equilibrium again. This is the process of compensation. It's not fun, but compared to vertigo it was a cake walk.
It started slowly and ramped up over a few days.
I felt very off balance but it was really only an issue when trying to walk. I was actually able to sit still and work on my computer as long as I didn't move my head. Any sort of movement that required the balance nerve to function created a sensation of motion in my field of vision. But unlike vertigo, as soon as I stopped this action, the sensation also stopped. I wasn't able to work for hours at a time as it's a little hard to focus, so I took frequent breaks.
I knew ahead of time that the more active I remained, the quicker compensation would be achieved. I continued to do basic yoga as I've done for years. It was not easy to maintain balance, but I knew it would be a great help. I also did head shaking exercises 3 times a day. You can find details of these online. You basically look side to side and up and down quickly a bunch of times. You do it with your eyes open AND closed. Can be uncomfortable, but certainly works your brain to compensate. Lastly, I tried to walk as much as possible around my neighborhood and around my home. The worst thing you can do is sit around or just lay down. Your brain isn't learning that way.
One thing that scared me at first was when I woke up with double vision. This lasted about 15 minutes and went away. This occurred each morning for about 8 days, getting more subtle each day.
The "off" feeling was fairly profound for around 2 weeks once it kicked in. I had at least a week where it was strong all day. Then things slowly and I mean very slowly began to improve. If I had to drive myself to work, I would assume 2 weeks into this I probably could have. Not including the first week while i was "waiting" for the Gentamicin to take effect. I suppose many people could go to work right after the injection and just wait for it to take effect before taking a leave. It didn't just begin like a ton of bricks hitting me in the face, this was a gradual build up. So you would have time to figure out what to do.
2 Months Later
I had a second injection scheduled for a month after the first. But I haven't needed it.
I still have the fullness and tinnitus that one would expect from menieres, but no more vertigo. Zero.
I can tell when I would normally have an attack. There is a mild sensation of dizziness followed by a clearing of the fullness. That mild sensation tells me that the nerve was not completely destroyed, but enough that I don't feel much anymore.
I don't believe that I lost any additional hearing from the injection. My hearing was already very poor, so it's hard to tell.
There is still a slight amount of compensation occurring mainly with a slight bit of feeling off balance, but I can tell every day it gets better.
I now experience Vibration Induced Nystagmus which is a side effect of unilateral vestibular loss. Basically when something vibrates against your head like a hair trimmer or chewing on carrots, you will have a bit of nystagmus. Goes away as soon as you remove the vibration. Strange for sure, but hardly an issue. I've also read that this is typical when there has been a unilateral vestibular loss.
My life has returned to me.
No more drugs, no more mass supplements, no more crazy low salt restrictions, no more anxiety, no more depression, no more wasting energy dwelling on my condition. I am happy again. My family has me back, my children have a normal dad.
I hope this is helpful in your journey towards relief.
Feel free to ask questions as I will monitor this post.