Hi, This is my first post. I was diagnosed with MD around 2013. I have had enough hearing loss in my left ear to have to get a hearing aid. I tried nine steroid injections, diuretics, 1500 mg sodium per day diet, cut out all caffeine and still had vertigo attacks. I had endolymphatic mastoid shunt surgery. It did not work. The vertigo attacks became more frequent but less intense which only means that I was not vomiting every time. I was told my next step was gentamicin injections to kill the balance portion of my left ear. Three shots, three weeks in a row. I just had my second gentamicin injection this past Wednesday. I had a vertigo attack four days after the first shot. I had a severe vertigo attack three days after my second shot. Does anyone know what happens after the third shot? How do I know if the shots are working? My doc told me to be expecting a long 2 day bad vertigo attack....does this sound like anything you have been told? If the side effect of the shots is what you are trying to get rid of... vertigo, how long do you have to have vertigo until you figure out that the shots DID NOT work? I'm not very trusting of any doctor at this point because nothing that I have done so far has worked. Yes, I was VERY active and felt like I could conquer the world. However, this nasty thing called MD has slowed me down to the point of high anxiety and depression. Are there ANY success stories of the gentamicin injections? Thanks for your time!
I did not go the injection route. I was able to try (after 2 yrs of suffering) anti-virals and they have worked well for me. I would say that if I was having significant constant vertigo attacks I would have surgery laby or vns. I do have a prescription for Ativan that I place under my tongue if an attack starts. That shortens my attack to under 2 hrs - not great but compared to 6-8 hrs....a blessing. Good luck.
Here is a link to my detailed experience of Gentamicin. It worked wonders for me with just one shot. I'm going in next week for a 2nd shot which is 7 months after the first. The reason is a bit of residual balance function, but nothing major. I simply want it all gone. http://menieres.org/talk/index.php?topic=945.0 Your doctor said a "2 day vertigo attack", but that doesn't sound accurate. When the drug kills some of your balance function, your brain will enter "compensation" which means it is learning how to function with one side at 100% and the other at lower function. It's more of a woozy, unbalanced feeling that was not felt unless movement occurred. Certainly not vertigo which goes nuts even while sleeping! I'm not sure why your doctor would prescribe 3 shots in 3 weeks. Like I said, one shot did the trick for me. It took more than one week for it to even begin to show symptoms of nerve destruction. Why not give each shot some time to see if it worked before moving to the next? One risk of aggressive GENT treatment is total deafness. Spreading the shots out is supposed to help this. FYI, I go to House Ear in LA for reference. marc
I've had the Decadron shots and those work great for me. I am so sorry that you are at this point. My Dr told me the Gentamicin shots were sort of a last resort and preferred not to do them for me until we exhausted everything else. Seems like you have done that. And he did also say that you feel worse before you feel better - But three shots in three weeks ?? He made it sound like they would be months apart.
I have been doing the gentamicin injections for over 4 years now. The first shot or second shot should be the one that you know it is working. I woke up a few days after my first shot and my whole world was tilted like the floor was now a wall and I felt extremely disoriented and I couldn't stand because my balance was so out of whack. If you are experiencing something similar then you are having a good reaction to the shot and your brain is starting to adjust to only having one nerve sending the signal. You will still get sick but it is not room spinning vertigo, however it's not uncommon to have vertigo the first week after a shot. Eventually the disorientation goes away then you sort of have a drunk feeling. Your vision will be bouncing when walking but this will go away overtime. The important thing is to keep walking. One thing I do want to mention is that this is not a permanent fix. I have to get another series of shots every 9 months to a year. The nerve slowly heals to the point I start getting vertigo again. Nothing like before when I had hours or even days long vertigo but more like minutes even just a few seconds long. A series of shots for me was get a shot, come back three weeks later and get another, come back in 6 weeks and determine if a 3rd shot is needed. I rarely need a 3rd shot. When I get vertigo again a year later I go in and do the series again. After the first series the relearning part is greatly reduced. What took 3 months for my brain to relearn the first time only took a month the second time and even less the third time. I might not have one 100% of my life back but more like 80% which is way better than I had before.
mbach, your link of your journey with our hideous enemy sounds just like mine! I am going to have my family and friends read your link because it is hard for me to express to them what it FEELS like physically and emotionally. If I look fine, how can I feel so sick? If I do not appear sick, (but have felt woozy and sick to my stomach for hours) how do my family, friends and co-workers understand when you get to the point of not being able to function ALL OF A SUDDEN? After all, you look fine, unless of course you are falling down, looking drunk or vomiting. Then, and only then do those people see that something is TRULY wrong. I appreciate everyone sharing their treatments, thoughts, opinions and results of what worked for them and what has not. My doc has not offered any anti-viral meds. The three shots, three weeks in a row is what my doctor said needed to happen since the endolymphatic shunt surgery did not work. I told him I wanted the low dose gentamicin shot, once a month to monitor hearing and balance function. And, because I researched and found that it reduces the hearing loss in a certain percentage. He told me not to believe everything I read online. He said that in his highly successful business in Dallas, the once a week for three weeks works. So.....if this does not work, I am going to need a new ear doc in this area. Thanks for the time!
I urge you to read this from Dr Hain in Chicago. He's very well respected. He recommends low-dose. House Ear clinic in Los Angeles where I go is one of the best in the country and they also recommend the same. http://www.dizziness-and-balance.com/treatment/ttg.html I would present Dr Hain's info to your doctor and have him explain to you why going all-out with the drug injections is necessary. One thing to keep in mind is that when I had my injection, my balance function was only at 40%... someone newer to the disease might not have the same result as I did with a single injection.
ThisMamaRocks, I might be misunderstanding what you mean by "Three shots, three weeks in a row." Do you mean 1 shot every three weeks or do you mean 1 shot once a week for a 3 week period. If once a week then I agree with mbach and that is a very aggressive treatment plan. I to live in the DFW area and was first diagnosed by Dr. Owens at Owens Ear Center. Dr Robert Owens did my mastoid shunt in February 2010 which failed 5 months latter. He also wanted to do the shots after the shunt failed but I was hesitant so wanted to get a second opinion. Dr Owens always seemed in a rush and rarely seemed to want to talk to me. He would almost seem to get upset if I asked any questions. So when I saw Dr. Peters and he explained the injections, was willing to take his time to answer questions then it was a no brainer who I would want to do the injections and I have been with Dr Peters ever since. I guess this is my "long winded" way of saying get a second opinion. On a side note we have a yearly Texas Meniere's gathering once a year here in the DFW area. Usually around July and August. DizzyLittlePiggy will usually post about it in the Front Porch a month or so before it happens. It's always nice to get together with fellow menerians and talk about our experiences.
Thanks everyone for your input. I have had my third gentamicin injection in three weeks. I've been feeling off, dizzy, had a few vertigo attacks, and after the third shot, a non-stop dizziness like when you stand up too fast but that dizziness does not stop. Valium makes me slow thinking, sleepy, groggy, foggy and it does not take care of the constant nausea and queasiness that comes along with the dizziness. I tried a small amount of cannabis and that takes the nausea away immediately. I cannot say that anything else that has been synthetically made has worked as well. It has helped with the anxiety, too. Meniere's Disease can be maddening.... but if a little bit of a natural substance helps, then why not at this point?