Hello, I visited these amazingly helpful boards in 2009-2011 when I was first diagnosed. I attribute the advise I got here to getting me into my "remission" after 2 years of misery. I say "remission" because even during remission I still had minor symptoms - just not to the point where my life was significantly impacted. (If I started to get some ear fullness I could knock them down making sure I got rest, ate right and reduced stress) Everyday I realized how lucky I was though and there wasn't a day that went by that I didn't think about how others were not as lucky as I to get a break from this nastiness. My symptoms started increasing in September - ear fullness, hearing loss. By October, they were even worse and by the end of October I was right back in vertigo land - mostly have been able to head off full attacks with Klonopin, but have recently had a few when even that wasn't enough to prevent me from making friends with the bathroom floor for hours. I am looking for suggestions as to what my next steps should be to try and regain some of my life. I am religiously low sodium. I started to sneak a bit of gluten in when my symptoms were in check, but have now cut that out again. I have taken 3 lemon bioflavenoids and 3 500mg Vit c evenly spaced throughout the day since 2010 and feel it is greatly helpful. I saw Dr Gacek in 2011 and got a script for anti-virals - he told me not to use them until I had active vertigo regularly and right after that I went into remission so I never used them. I do have an appt with an neurotologist as I haven't seen one since 2009. I would love suggestions on next steps...wait and see what the neurotologist says on Dec 8th? See if I can get back into see Dr Gacek in MA (I am hoping he is still practicing)? I haven't recently tried grape seed extract and pycnogenol - nothing but vertigo since trying them but maybe I am not giving it enough time. One other question: I know that it is felt that some cases of Meniere's are caused by capillary circulation? I also have Raynauds and high cholesterol. It does make me wonder if my issues with my ear are circulatory in nature. Does anyone else deal with Raynaud's as well as Meniere's. Thanks for getting through this long post. Any suggestions would be highly appreciated!! Best to all for a spin-free day.
Hi If my symptoms ever returned I think I would go for the antivirals and if not at least LLysine. I would also start again from scratch on food and drink triggers consulting the book (my bible) heal your headache by David Buchholz. Best of luck Frank
Thank you Frank. Being in MA I called Dr. Gacek. He had a cancellation for tomorrow afternoon so I took it. I guess anti virals will be the first thing I try. Hopefully I will be one of the lucky ones.
Good luck! I absolutely think the anti-viral route. One other thing, I have a prescription for Ativan that I take if a vertigo attack hits. I put it under my tongue and it shortens the attack from 4-6 hrs + to 2 hrs or so. Might be something to check on as a backup solution. Ativan is highly addictive so my dr has given it as a only crisis basis. I only have a script for 10 at a time. Goal for me is to never use them!
Thanks for the Ativan suggestion. I have klonopin which is similar for the same purpose. I am panicked at ths point because I have taken 4 in the last 3 days. When my menieres was active before I tried to limit myself to only 1 or 2 a week and even then I tried very hard to avoid them. This time I tried to avoid taking it and I had a 6 hour attack.......ugh. addiction or avoiding the bathroom floor...not a very good choice, huh?
I don't take the Ativan in case of attack, only if the vertigo starts. Then placed under the tongue. I know it is much easier said than done....but try your best to take a breath, relax and not stress about the "what if" an attack comes. In my experience the more I wonder what if it guarantees that I will bring one one.
I will never stop taking antivirals no matter how good I feel or how long remission is. I have no desire to stare that beast in the eyes again.
Sorry...I wasn't clear. I only take the klonopin once the attack starts as well. I have been practicing meditation for a few months so when my bad attack started I tried for 45 min to just relax and meditate and felt confident I could "relax my way out of it". By that point I was to far gone and the klonopin was of only limited use. Thanks for the suggestions. I guess there are no easy answers. I do agree that worrying about having an attack only makes things worse. Definitely challenging though. I do think meditation helps with that some.
Any thoughts on how long it is before I might know if the antivirals will help? I have an appointment with a conventional neurotologist on Dec 8th and I'm hoping I might have some idea by then if the anti virals are helping. Thanks to all.
I've seen three months in other threads. Not sure what the average or outlier is off hand but Dr. Gacek would probably have the best numbers given he's the proponent of the AV treatment.
LeeAnn - did you see Dr G yesterday? Believe he would be the foremost expert on everything anti-viral for Meniere's! For me, I saw improvement in the first 3-4 weeks on the load dose but not as good as I wanted, the load dose (3x day) was extended for another 4 weeks then the taper. And from there have been doing well.
Saw Dr. G. He prescribed 1gm of Valacyclovir 3 times a day for 3 weeks. He said if there is no reduction in symptoms in 3 weeks that it won't help. I will return in 3 weeks for follow up. He said there is a 90% chance it will work. Going to pick it up now. Fingers crossed!!
Good luck. I did get a reduction in ear pressure and all within the first 3 weeks but wasn't sure it was "enough", so I asked (and was approved) to continue the 3x day dose for 4 more weeks before tapering. that did the trick. So, if you feel some relief but not quite "there" don't hesitate to ask for approval to extend the 3x for a bit longer.
I'm surprised that he's sticking to the 3-week rule given that many people here have reported results only after many months. I wonder if the remaining 10% that he's reporting as failures could be saved if they went longer at the higher dose.
That, exactly, has been the case with my regimen, where the recommended 3000mg of lysine taken in three 1000mg doses each day has in a minority of cases failed to bring any relief. But many (the majority) of these people have finally gained relief when the regimen was then continued way past the initial 3000mg daily dosage, for longer than three weeks or so. Some have gained symptomatic relief only after many weeks, even several months of the regimen. Additionally, some have had to hike the dose to 4500mg, for a lengthy period, to gain relief. Is summary, not all cases of herpes-caused Meniere's respond quickly or completely to either prescription antiherpetic drugs (as in the postings above), or to the lysine in my regimen. One should strongly consider hiking the dosages and increasing the treatment periods before presuming that these treatments don't work. There is no make-or-break magic in a short, 3-week treatment period. It can take much longer --- as so many have discovered. Read closely the info on my regimen, here: http://www.zoominternet.net/~kcshop/JOH.pdf Then, concurrent use of both the regimen and prescription antiherpetic drugs is perhaps the most favorable approach. Read the info here: http://menieres.org/talk/index.php?topic=557.0 --John of Ohio
I agree with nicmger if you get any improvement within the 3 weeks keep taking it. Chances are you will get more improvement in time. For me the longer I stayed on acyclovir the better I felt and that was way past the 3 week cut off.