I am feeling seriously hopeless today. It seems like there is no end in sight, in fact it just seems to be getting progressively worse. I just started on 1000 mg of Famvir only 6 days ago and my imbalance and tinnitus have indeed gotten worse, which I hope is a good sign . I just saw a functional neurologist and he gave me some exercises but I'm starting to feel like all these doctors are worthless. I know they're trying, but I'm getting no relief. All I want is some relief. My birthday is in a week and all I want is to be better. I don't want anything else. How do people deal with this? This truly feels like a nightmare.
Megan, I think you're on the right track with the new Rx for the antiviral. I, too, started on 3000 mg/day of Acyclovir just 6 days ago. I had been on 200-400 mg/day to control herpes, and I've been taking that for maybe 20 years. I never guessed that herpes could be the root cause of my Meniere's until I started to read the posts on this forum! And my ENT doc, who knew I was on this drug, never talked about this! I asked him about the antiviral, and he put me on this heavy dose of the same drug. I can't say I'm feeling any different after 6 days, and I had 2 vertigo episodes yesterday, each lasting a few hours, and I've never had 2 in 1 day before. But based on the comments of others, that it takes awhile, and things may get a bit worse before better, I have hope, as you should have, that you'll get on the better side of this ordeal, and soon! I, too, was very discouraged earlier this year, after about 2 years of struggling with the tinnitus, fullness, hyper-sensitivity, all of which got suddenly worse. The doc had me try Sudafed for a week or so, then an antibiotic for maybe 10 days. No change. He then changed the diuretic I had been taking. I had a lot of dizziness and bumping into walls for awhile, which the doc attributed to the new drug. Then I added the very nasty vertigo episodes about 6 months ago with severe nausea/vomiting and much more hearing loss in one ear. The doc's office wasn't offering any help and I found this forum which has been a wealth of knowledge and encouragement. I keep a log and I've had 12 bad episodes since May and they can be weeks apart. I live in fear I will have one while driving or out in public, which thankfully has not yet happened. I've been taking the JOH regimen of supplements for about 3 months. I can say the tinnitus has diminished greatly, and with the last few vertigo attacks, I haven't been vomiting, although I still have to take an anti-nausea pill. I think I read on one of your earlier posts that you are also on the JOH program. Some say it takes 4-6 months for more relief, and again, things sometimes get worse before better. I don't know why this would be true, but it's comforting to know others have been down this road and there is hope that it gets better. I'm curious about the exercises you got from the neurologist. I sometimes do some Epley-type exercises I found on line when I'm feeling on the verge of a vertigo attack. I don't know whether or not they help. And when I'm really spinning and can't focus, I try some eye exercises. I feel like they maybe lessen the length of the spinning, which is still miserable. My next ENT appt is in a few weeks and he gave me a referral to a therapist that does CRT (Canalith Repositioning Therapy), so I'm anxious to get through that session. Remember that most people who post on this site have been through the worst this disease has to give. And there are many more who respond well to treatments and get better more quickly. So stay the course on the antiviral and let us know how you're doing. And Happy Birthday! I hope you can celebrate after a better week ahead. All the best... Diane
Much of the suffering you've articulated here falls under the rubric of discursive thought, or being lost in thought. And while often used as a pejorative—which I mean not to do here—Ménière's (& migraine associated vertigo) either amplifies or summons the neuroticism in if not all, then the vast majority of us. We have the physical limitations Ménière's places upon us, & we have the immediate emotional & psychological response to these limitations & experiences. Then, in addition to, we have a voice emerging from the back of our mind declaring "hopelessness", that there is "no end in sight", that it just "seems to be getting progressively worse", a sort of permanent bombardment of discursive thought that plagues most, if not all of our waking moments. Training your mind via a method of introspection known as vipassana will allow you, over time, to cut through the background noise your mind produces while grappling with Ménière's, or life & its many struggles more broadly. If interested in this method of introspection, let me know, & I'll do my best to point you in the correct direction. To you, feeling better soon.
Meg, Your feeling what many here have been thru with regard to the time it takes to figure out your trigger/solution for this horrible ailment. Hang in there and focus on other possible causes while you are hopping the antiviral bunny trail. I'm not sure of your story and whether or not you have tried the headache diet yet. Personally, I never had headaches, blew off the possibility for a year before my Doc wanted to treat me for MAV as we were preparing for a Laby. Well, it looks like I was a silent headache victim. My pain was vertigo. Now I've been vertigo free going on 4 months. What I'm trying to say is explore all the possibilities. Especially those that are non-invasive. I believe Buchholz's headache diet helped more than the medication as I am on a real low dose of topiramate right now. I spent 3 years looking for this solution. 3 years may seem like a long time. Others have been at it longer. This forum gives you an advantage as you have access to a long list of potential solutions.