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Discussion in 'Your Living Room' started by Brian, Aug 3, 2021.
it didn’t stop the progression of the disease in your case or did it?
I think about doing it every day - 20 times a day. I'm not sure I have the bax#s to do it . When I first got this I thought it's better than cancer. Now I have cancer and every time I go for a treatment I think - is it worth going through all this BS just to survive and live with menieres. At least if the cancer gets me it may do what I don't have the bax#s to do myself.
this is exactly how I feel everyday. It’sa miserable disease and don’t know how long I can hold on either.
No, because if it’s viral, you can’t kill the virus. The AVs merely suppress its ability to replicate itself, but that doesn’t stop flare ups, which occur for God knows what reason. So far though, increasing AVs during flare ups has always brought me back eventually. I also take 6,000 mg of L-lysine daily and 6,000 mg of olive leaf extract daily as well as the vitamin B routine and vitamin C mega dose. It’s a rollercoaster, but I have found that for me, the AVs relieve the tinnitus, hyperacusis, and pitch shifting. Oddly enough they do nothing for my dead ear and i always have high-pitched tinnitus in that ear and believe I always will.
I was diagnosed at 37 (54 now) and have been through many ups and downs throughout that time. As a musician, I first lost the ability to play live because of the vertigo and now am slowing losing the ability to enjoy playing at all with the days of hyperacusis and pitch shifting. I assume at some point I will be completely deaf and not able to to really enjoy playing an instrument I have played since a teen. It took a while, but i did come to terms with that. I can still make a living and support my family as well as communicate on all but the worst days. There is life after Menieres. There are plenty of people on this forum who would echo that, @Bulldogs comes immediately to mind. Hang in, you can do this.
Have any of you sufferers who have had a labyrinthectomy still have hyperacusis?
I would consider a labyrinthectomy if there was a possibility the hyperacusis would be gone.
24/7 hyperacusis would be a death sentence for me.
I was diagnosed at 38 I’m now 39, but have had symptoms since 2013. I’m really not sure I want to be awakened in the middle of the night with my ear screaming at me every night for the rest of my life. Last night was especially bad.
You said the antivirals relieve the tinnitus in your good ear. Do you mean get rid of it or make it more bearable.
No more hyperacusis after laby
Got Rid of it. It still comes back on flare ups, but it goes away completely when the AVs kick in.
I have no hyperacusis in my laby ear. I do have it in my “good” ear tho. (Bilateral)
Brian, I have read this whole thread and all your replies. Although our symptoms are different the feelings sound the same. It takes quite a long time and varies person to person but getting used to the sound of the roaring happens. I have gone to bed to the sounds for over 20 years now. They still wake me up when the pitches go crazy sometimes. I can not hear anything without my hearing aids. I'm bilateral and they want to implant me but I will not do that until I can't provide for my family anymore. I had bad thoughts in the first few years as well. Once you manage your diet, get on a plan, get a good doctor that understands this disease. It will get better and get manageable. I have lost 2 family members to suicide. That is never the answer and it is the easy way out. Life is hard. Hardwork pays off. Same with life. Your life is worth living and this disease will not change that. I went to a therapist and it helped me so much that i recommend that to anyone. It took me years of breaking down to admit but when I did I don't have any concerns of being weak. I needed help to get over the bad slump of new challenges. Sorry for the long reply but there are so many people in this forum that can show you that life is great even with this crap. I'm 42 years old and can't function without hearing aids. I'm making it though. So can you.
We are similar in age, I am 39. I don’t see myself wanting to deal with this disease much longer. To think of living with this for another 40 years and having it get worse and worse is unfathomable. I am going to try antivirals and if that doesn’t work I’m not sure what I’m going to do. This disease has ruined my life.
Antivirals didn't do anything for me but hopefully they help you. Change your diet at the very least and if you can't get through it, then that's when people take the Laby step and move on.
The thing is I still have most of my hearing. What antivirals were you on? My tinnitus was greatly exacerbated by the covid vaccine (Pfizer) also. I’m also tapering Klonopin and that is making tinnitus flare as well. I was only on it for about 1.5 months!
Kevin did you have MD in both ears? If so, how did you know what ear to have the nerve removed? Do you still get drop attacks? I have MD in both ears for many, many years and now I have been having drop attacks which scare the hell out of me. The last fall I had, I fractured my back. Don't know how to live not knowing when the next drop attack will occur. Thanks for any info or advice you can give.
If you still have most of the hearing in your MM ear, a VNS (vestibular nerve section) will end the vertigo and spare your hearing. I had it done in my left ear in 1993. It is way more complicated than a laby, but it was worth it to me. An incision is made in the scalp behind the ear and a piece of skull is removed. The surgeon locates the vestibular (balance) nerve where it leaves the inner ear, and follows it up to the brain where it's snipped off. There is no longer a pathway for the brain to receive the message that there's something wonky going on in your inner ear.
Following my VNS I did have pretty bad tinnitus for about a year or so. It became less and less and many years ago it stopped being an issue. I'm left with a soft jingling sound and sometimes a very faint ssss sound. I've learned to live with it and now it's just a part of me.
A VNS or a laby is done to stop vertigo and drop attacks, but if you get relief from tinnitus or fullness, that is icing on the cake. You shouldn't go into one of these destructive surgeries expecting it to solve the tinnitus problem.
My MM did become bilateral several years after the VNS, but I haven't had vertigo from that ear, either, in about seven years. The tinnitus in the second ear isn't very bad either, however, every once in awhile I will have a few days of pulsating tinnitus that just about drives me over the edge.
Keeping looking for solutions, Brian, and don't give up!!
I had single-sided menieres when I had the labyrinthectomy. By the way, a labyrinthectomy doesn’t remove the nerve, it removes the anatomy that makes up the balance function in the inner ear. I became bilateral approximately six years after the laby. So far it has been limited to cochlear hydrops, which only affects the hearing and has yet to affect balance so no vertigo or dizziness. Hope this helps and best of luck!
My vertigo is under control. It is the tinnitus that is driving me mad. I don’t know if the antivirals will help that but I’m willing to try it.
I experienced several drop attacks. My doctor says to keep a diary and monitor what happened on that day.