Through this very helpful forum and my new ENT, I am becoming more and more convinced that I do have Meniere's but (fortunately) not vertigo directly connected to that. I think all my vertigo has been MAV and BPPV. I have never had the exhaustion following a vertigo attack as described by people with Meniere's-connected vertigo here. The only times I had vomiting with the vertigo were early on, and perhaps I wasn't as adept at dealing with the vertigo then. I wonder if anyone in a similar situation has tried the anti-virals, and how it's gone. As I'm reading threads about anti-virals I notice that a lot of them are defining success as being vertigo free. I do understand the anti-virals can help the hearing loss, tinnitus, and fullness, which would be wonderful. I am concerned in making it worse before it gets better I might bring on the Meniere's vertigo. So my related question is: for those of you taking anti-virals that experienced things getting worse before they got better--was it the bad end of the range of what you'd had or were there any new symptoms?
I have cochlear hydrops. That is to say the menieres at present is not in the part of the ear that would cause vertigo. I had had this for nine minths before trying acyclovir. I had never had vertigo. However as time went on, i was starting to have a symptom where certain frequencies of sound caused nausea. When sound causes vrtigo it is called Tulio's. I believe i was headed toward vertigo at this time. When i took antivirals, i did get worse before i got better. It went this way. Days 1 and 2 no change at all. Day 3, my distortion which was my worst symptom in terms of quality of life, got worse but in a different sort of way. I almost quit taking them at this point. Days 4 and 5, for thefirst time in 9 months the distortion began to cut in and out, just enought to give me a glimmer of hope. That was 6 years ago. I now have hearing in the normal range (from up to 50 dcb loss). My LOUD 24/7 tinnitus is gone, the distortion is gone, gone gone. I have had no progression to vertigo and lost the tulios type symptoms along with losing hypercusis etc. My ear is permanently damaged and maybe it will crash one day but i have 6 years of improvement and freedom from thesesymptoms. I have not developed vertigo. I also take allergy shots which have helped. It was acyclovir and famvir that got rid of the distortion and tinnitus and some other symptoms.
BTW, i have only one balance nerve and one hearing ear, this one with cochlear hydrops, so if it goes bad I am SOL so I take this idea of progression to vertigo very seriously.
Thank you very much, June. That is very helpful. You've been so great about answering my questions. I'd forgotten you didn't have the vertigo either. And, wow, given your situation, especially, thank goodness it worked. I just picked up the prescription today. They are 400 mg tablets. The doctor said to take them 5 times a day for 10 days, then 3 times a day for 10 days, then 2 times a day for 20 days, and then check in. Is that similar to how you began?
I think so but it has been so long i couldnt tell you exactly. I know with acyclovir it is very important to spread them throughout the day and i did start with 5 times a day. Good luck!
I also have MAV and BPPV and recently asked my ENT about anti virals but he said that was a bit drastic (pity...I'd already paid a fortune to get some! )
I wonder why he called it drastic. Several doctors have told me they are a generally well tolerated drug.