I tried doing a search and didn't find anything that seemed useful. I am looking for suggestions. I would prefer those with experience in this. I have late-stage bilateral true Meniere's and first presented unilaterally 28 October 2004. Became bilateral mid June 2006. I have had endolymphatic sac decompression on both ears. My oto told me I am in the rarer category of those who get worse instead of moving into the burnout phase. I have three different types of vertigo now. My regular vertigo lasts more than 24 hours. I also have what I call mini bouts that last about an hour and have specific triggers, some of which I can control. I also have demi bouts that last about five hours and I take Meclizine and sleep it off. My current problem - I have Shingles in the right side of my head and it is now BFF with the Meniere's. All medical personnel on my team are aware of this and working on it for my relief. Is there anyone who has already been through this and can help me with some suggestions, encouragement, etc.? I am on my second day of Prednisone and having issues with it and am awaiting doctor's message regarding starting Gabapentin.
I'm very sorry to learn of your situation, @DL Bach, I had an endolymphatic shunt placed in 2019 that helped for only 2 yrs then my hearing loss & vertigo continued. It was discovered that I had bilateral internal jugular vein compression caused by my C1 vertebra & styloid process in my neck. Since I've had one side decompressed, my vertigo has gone away. Re: Prednisone, it gives me terrible side effects so after my recent IJV decompression surgery, my surgeon prescribed dexamethasone which works as well but w/o the side effects of prednisone. The only side effect I experienced was a little trouble sleeping but far less than what I get from prednisone.
I don’t know if my experience will be helpful for you but I would like to share. I have MM since late 2016 and at least 2 times surgeries. But nothing really lasted long time. I had some really bad weeks with daily vertigo since end of November. Went to the hospital but they didn’t really help me. By accident I found one comment in YouTube about a study by Richard R.Gacek about antiviral treatment. So , I talked to my doctor to try this way. Actually the treatment is with Aciclovir in different doses but she recommended to start with Brivudin. The name here in Germany is Zoster Galen. One pack contains 7 pieces. I took them and the result was overwhelming. Not in the days I took the medicine, there still had been daily attacks. But in day 8 started to become better. Now I just continue with Aciclovir 800 twice a day for mor two weeks and then 1 per day . No more attacks for 3 weeks now, no pressure in my ear and tinnitus nearly disappeared. I pray every day that I can get released from this disease now and hope I found the way to recover.I really recommend to find the article of Dr. Gacek in in Internet.
Anyone with Meniere's should at least try antivirals, it might not work for everyone but it certainly worked for me.
Not sure if this is entirely relevant. I have had severe bilateral Meniere's since 2002. Have a cochlear implant in my left ear. I supposedly hit "burnout" in around December 2014. Unfortunately, after about two dozen surgeries since then, and a freak head injury, my symptoms returned about double. Worst of all have been the drop attacks. Three in six weeks, which prompted a visit to my doctor here at the University of California, Davis, Hilary Brodie. He recommended, and I have completed, a round of three steroid injections into my right eardrum, of dexamethasone. It hasn't helped my dizziness tremendously, but I no longer feel like I am on the deck of ship pitching in heavy seas while just standing, and have had no drop attacks or even near misses since the first injection. He said it helps for varying lengths of time for each of us, which is not news since we each have a unique set of symptoms in nature, frequency and intensity with this curse. It helps in about 2/3 of cases, he indicated. There are some risks, of course. As with everything. But weirdly, my hearing seems better as well. And it was entirely painless for me, despite the anxiety before the first injection--a whole in my remaining eardrum after all! But I throw it out for whatever benefit it might have to you or others here.
The most important information is, that MM disease might be caused by herpes simplex virus. That’s why suggested to have antiviral treatment for this kind of virus. But what I read is, that the treatment is more successful when starting in a stage when the virus is active and the frequency of the vertigo attacks is is high. It worked for me after several weeks of daily vertigo attacks but as I talked before, I started with Brivudin for 7 days and had a stunning result after one week already.
I just saw this. Going back Monday, July 21, 2025 to begin another round of steroid injections in my right eardrum. Why? Another drop attack, fortunately not one where I broke or bruised anything, and several near misses, but worst of all, near constant dizziness. Add to that never-ending pain from my multiple surgeries and I can only survive on bad days, meaning most days, with a combo of Tylenol, Valium and low dose Oxycontin. The news to me, and I will surely research it, is the possibility that herpes simplex could be a cause of Menieres. If so, since I contracted THAT in 1984 from my ex (yet another of her many "gifts" to me), antivirals might well be another aid, though I confess I have used Valtrex and others in the past with no effect on my Menieres. But given how limited my life is, and how poor its quality, anything is worth a try. Especially since at age 77, my remaining time is likely rather short. So thank you for that bit of info. And good luck to you and all here, always. This ailment is truly diabolical, destroying the quality of life for many of us while making us look normal to other people who have no clue how terrible it is to live with this.
I'm sorry if I sound ignorant, I am new here. Menieres for 8 years. Was wondering what "drop attack" means? Thanks
Drop attacks are when without warning a dizzy spell or instant vertigo “hits you” to where it usually knocks you off your feet and you fall down or into something. It usually lasts a few seconds (I have only had one and it lasted about 5 seconds). After that the vertigo goes away. Many hav received bodily injuries because of them. Being I have only had one others might be able to explain it better.
My vertigo attacks never last seconds. They can last anywhere from 30 to 60 mins, this is where everything is spinning and you can't walk.
My vertigo lasts an hour to 5 hours. I usually feel it coming. That’s the difference from drop attacks and typical vertigo. The drop attacks happen out of nowhere and are gone before you know it.