Poll for Anti-Viral med takers

Please answer the poll and also reply and tell us which anti-viral medication you are taking, or have taken in the past.

I'd like to know how long you had MM before taking the anti-virals, and whether or not you know that you have nerve damage. I'm especially interested if they didn't work or caused unacceptable side effects.

I'll be posting a long message on the weekend listing scientific studies concerning MM and viruses. I want to put together a document with those results and the results of the poll (testimonials) that patients can use to help convince their MD to consider prescribing anti-virals if you so choose.

I suspect that Herpes is related to MM. I do not necessarily think it is the only cause of MM. There may be other viruses, and bacteria (at least in the form of Lyme Disease) can cause MM-type symptoms and may be mid-diagnosed as MM. HenrySullivan and others think that spinal mis-alignment may cause it in some people.

JohnOfOhio's plan has helped a lot of people, but the plan, along with Gent or Dex injections, diuretics, betahistine, valium, etc, and surgery, are all attempts to control the symptoms and not solve the root problem, though I will leave open the possibility that the JOH plan may address the cause as well.

When I compile the testimonials, I'll leave off the screen names for privacy.

Thanks!
Papa

 

I took antivirals for treatment of cochlear hydrops. My symptoms included hearing distortion, low frequency hearing loss, autophony and constant loud tinnitus.

Originally I took acyclovir for about a month by my family dr after the neurotologist ran out of things to try. The family dr had suspected a virus was involved in my case. It helped a lot starting around day 4 and 5 but it was not an instant or complete cure. It was the first thing that had helped in 9 months of consulting a neurotologist. The tinnitus was almost eliminated, the autophony greatly reduced, the hearing loss did not progress further and the distortion was greatly improved.

I followed up with allergy treatment and a course (3 month) of famvir prescribed by a dr at House Ear Clinic. After 2 1/2 years my hearing loss is now borderline normal, my distortion, autophony and tinnitus almost gone. I still have remants of my hearing disorder but the improvement from these treatments has changed the quality of my life dramatically. Although I have had some fluctuations in symptoms, never since I first took the acyclovir have my symptoms returned to anywhere near as bad as they were those first nine months before.

I noticed no side effects but based on something raised on this board a few days ago I have begun to wonder if the high pitched tinnitus has increased since the antivirals. I had this tinnitus for many years and thought it was more evident because the other symptoms went away but I am not sure. In any event it is just a white noise to me, nothing like the effect that the hydrops jet engine 24/7 had on me.

 

busy board tonight - BUMP

 

I've been taking it for just about a month and it does seem to be helping a lot. I have cochlear hydrops so just hearing loss/tinnitus/fullness/hyperacusis and all these symptoms have nearly gone away with some tinnitus remaining - and my hearing, though in the normal range, isn't quite what it used to be. I have 2 more months to stay on it before my prescription runs out.

 

Haven't taken it yet but I WILL when this beast mashes me down again. Doc has already agreed to it. VK

 

Acyclovir, lived with MM 21 years before starting anti-virals. 90% success rate. No side effects.

Larry

 

Started taking it in Aug. Am now on maintenance dose.Also take serc 3 times a day.
Don't know if I have nerve damage. Have been diagnosed since April.Have been having rapidly deteriorating hearing since 2007.
No side effects for me.
Have been feeling a lot better.No vertigo,no spins,(knocking wood),Last audiogram in Oct.showed some increase in hearing.
Less tinitus,but it is still there on some days.

Am also taking 1000mg of L-lysine,vit c lemon bioflavnoids,Vit D,Vit E,and Fish oil.

 

Valtrex - started over 4 1/2 years ago and still take a maintenance dose. This along with other meds, exercise, balance therapy, diet and a lot of hard work got me my life back. No side effects from the valtrex. But it did ease several symptoms.

 

Haven taken it yet but if betahistine fail I will try it definetely!!

 

There is not a poll choice that describes my history with anti-virals. I took it for one month along with lysine when my hearing was cratering. I had no side effects but it did no good. My ENT and his nurse practioner (she works for 3 ENTS, has a very strong interest interest in MM and appears more knowledgable about inner ear problems than many MDs) said they felt it was critical to begin the anti-virals very early if they were to have an impact. Once the damage is done, they both suggest, the anti-virals or lysine could do little.

This notion coincides with the literature I was able to find in the professional journals. Speaking of which, there are mixed reports about the efficacy of anti-virals. Regardless, I encourage everyone who has MM and/or SSNHL to give anti-virals a try. Obviously, I would hope someone tried this in the early stages of their illness.

 

Hi Papajoe, and thanks for taking the initiative to put this information together. After Chipmunk mentioned that she printed some testimonials for her doctor to see, I was thinking it might be a good idea to put all this information into a central location for easy access for others who might like to do the same.

Regarding the poll, I answered on behalf of my husband, who has been taking Acyclovir for about 6 weeks with great improvement.

He started treatment with Acyclovir about 9 months after his first Meniere's attack. Brain fog (a constant issue) disappeared immediately, within the first day of treatment and has not returned since. He is no longer off balance and no longer suffers from nausea, dizziness, or hyperacusis. Prior to Acyclovir, he was having weekly Meniere's attacks and used to lie down for long periods each day. In a nearly a whole year, he has not driven more than 5-10 miles from home. He no longer feels the need to rest for long periods and drove about 60 miles the other day with no problem whatsoever. He is sometimes hit with very brief feelings of discomfort that last seconds but do not persist. He has also had some odd outbreaks of pimples along the side of his face, which I am thinking may be Herpes related (something like shingles or Ramsay Hunt), which I described here:

http://www.menieres.org/forum/index.php/topic,22340.0.html

He also still has some difficulty sitting in front of the computer or television but describes himself as "80% better." From my perspective as a spouse and observer, I would say it is like the difference between day and night. I would have said 95% better, but he can obviously feel things that I do not see or perceive. He is a new person on the outside, and it really shows.

 

I have been on JOH regime for over 3 years and it didn't help my Meniere's at all but I still take it because it has improved other areas of my health. I also went the Acyclovir for 3 months also with no change in my Meniere's.

I ended up having the Shunt surgery because nothing was stopping the attacks and I was about to lose my job if things didn't change. It's been 6 months since my surgery and so far so good, no attacks.

 

Thanks, Jim, you can answer took it but couldn't tell

 

Chipmunk sent that to me too, that's where I got the idea. Thanks for your entry.

 

bump

 

Good Morning. I am really, really excited this morning as a LOT of my hearing is back!

This is day 15 of acyclovir 800 mg x 3/da. I lost the fullness, brain fog, pains, itches, and hyperacusis after a week to ten days, but it has only been in the last 3 or 4 days that I have seen a slight and gradual improvement in hearing. Last evening, I felt that it had really started to come back more, and this morning it is a very significant difference. Yay! Now I am really looking forward to my audiogram next Wednesday.

I have to admit that there were days that I was discouraged, and if it weren't for the encouragement of folks on here who told their stories of how you had to wait patiently for the results, I just might have given up a few days ago. So thanks to everyone. I am so happy we have this site!

Antivirals should absolutely be the first line of treatment.

 

Acyclovir 2000 mg/day. This is day 8.

G

 

Very happy for you Chipmunk! I am on day 10 without any improvement (yet).
I don't know how anyone outside this forum could understand what getting a little hearing back feels like. For me, it's like coming home after a long time away.

 

Stay the course, Mobius. For me, the return of hearing was really sudden. I think the main reason I am so happy to see some hearing return is that now I feel there is hope of not completely losing all my hearing.

 

This makes sense to me. I took it after 9 months and still have remants of the disorder which I suppose to be permanent damage that will likely never be undone. But another thought also comes to my mind. All the time pre-antivirals, my hearing and other symptoms were getting worse slowly but surely, it was a zigzag downhill slide. Post antivirals it's been a zigzag path to the good. I wonder if even in long standing patients in whom so much damage has been done that they will never regain their hearing, if the antivirals may stop further damage? I suppose that could be a negative if it prevented burnout of vertigo but as far a hearing is concerned less damage is better I would think. The other thing is that when I took antivirals, I felt especially good over all. I wonder if this is a virus run amok in our ears if it politely confines itself to the ear or it may be causing problems in other internal organs. I know when I had the cmv that my liver, spleen and some of my digestive tract were affected.