meniere's caused by a virus-please read

I want to make clear that even though anti-virals and JOH has not helped me I strongly advocate trying both there is nothing to lose and minimum side effects and probably the safest treatment you could try.

 

Believe me Skye, you did not start anything.

 

You know, I think there is something to be said for this because my first sign that something was up with my MM ear was sudden hearing loss in 2004--I was prescribed antivirals and prednisone. Fast forward to 2006 when the tinnitus then the vertigo started. If I were to go out of remission I would request antivirals asap. As many have said it is a pretty benign treatment and worth a try for possibly fabulous results.
I have never had triggers or had to watch my salt. I eat anything and still am in remission. So that lends even more credence to a viral cause in my case.

 

Please anyone who is on the antivirals, PILLS, Do they make your stomach even more upset? Does it constipate you?
I have the anti pills sitting in my pill drawer, but I am too scared to take them for fear of the side effects.
I always get some type of side effect, and have IBS, with dyspesia etc. Plus other things I am take meds for.
Migraines, thyroid, interstital cystitis. So, I HATE to add to the regime if these pills will cause more problems.

 

They (acylovir and famvir) caused me no side effects whatsoever. And I often get side effects but not with the antivirals.

 

I haven't heard of any constipation problem, some people have reported some stomach irritation that goes away if you eat a few soda crackers.

 

I have horrible acid reflux, and my antivirals have caused me no stomach troubles, or any side effects for that matter. I have even taken them on an empty stomach without problems, though, if you're stomach is sensitive you should take them with food. Best of luck.

 

thanks.

 

<<My intentions were only to offer some positive, interesting news, and hopefully give people something to think about or try, if they haven't done so yet. I'm not the expert, and will never claim to be. I have no idea if the antivirals will work long term for me either. I'm not claiming that antivirals are the solution to all of our problems on here. I was only reiterating info that was told to me, that I thought some on here might like to hear.>>

Dear skye, thanks for your post. As a newbie, that's why I visit this chat- to learn from other's experiences since we all have frustrations with this and have to take responsibility to make our own choices as to what to try to get better.
Clearly the people that post here are suffering to some extent or another, and I'm not so much interested in who has, or doesn't have "real" Meniere's, but I'm interested in suggestions and support on how to cope with very real symptoms.

Just weighing in to say I appreciate you sharing your info with this community-

tcWy

 

Thanks TaichiWay! I hope you do find helpful ways to cope on here. I know that I've definitely learned about some invaluable tools from the wealth of knowledge those on here have to share.

Sorry to read in your signature that you're having so many vertigo attacks. Are you on any type of medication or form of treatment?

I can't wait for the day when everyone on here finds relief from this!

 

Hi Skye,
no I don't take anti-vertigo meds. I'm trying a diuretic (per my neurologist) and watching the salt, but not sure it helps. But I feel VERY fortunate because compared to some of you folks- I'm not so bad off (so far). When I have a vertigo episode, it literally last for about two minutes, so of course I'm incapacitated then, and afterwards I have the typical want-to-go-to-sleep and not feeling well, might be in bed for a day, all with the increased tinnitus and ear fullness, unsteadiness, etc.

So I've been able to hold my job so far, and have avoided the freeway since about January, and take the train a lot. My concerns now are that I seem to have this progressive 24/7 symptoms of motion sickness (even walking!, and I walk a lot!) tinnitus, ear fullness, and it's beginning to bother me when using the computer- lots of vision related stuff, which I guess makes sense. And just for fun (haha) I have this annoying twitch in my eyelid for weeks now! I just don't know where it's all going to go...

I'm scheduled for allergy testing, and will also look into the anti-viral approach. I figure I'll keep at it and find something that works for me- meanwhile my pursuit of Tai Chi helps to keep me in balance- literally and metaphorically. We all have to find our own way...

Thanks for asking, and "listening"
tcWay

 

Hi TcWay, you might want to look into MAV (migraine associated vertigo). There are many here with it and a number of us with both MM and MAV.

Good for you with the Tai Chi - I gave it a good try but had too much trouble with noise (beginner class indoors). I plan on trying again someday. In the meantime I do enjoy a lot of yoga - another exercises that's great for balance......body and mind.

 

Good morning. You had a very interesting post and yesterday I spoke with my ENT and gave him a printoff of your message plus the responses. I did not get a good response from him. He said he has been treating MM for over 30 years and his association has discussed this. He said that the idea of MM being caused by herpes has been around for a very long time and has been debunked. He is very skeptical of John's regime although he does recommend the bioflavonoits and Vit D. He doubts very much that I have herpes as well.

I plan to bring this up with my PCP at my next visit and see if he can do any testing.

I am now very perplexed about this whole matter. I have put myself on John's regime and had a sizable MM attack since. Oh well,
Ken - Denver

 

Skye--So good to hear of your success!

 

I am believing more and more on the virus theory, primarily due to the erratic symptoms with Menieres. How it can come and go with no rhyme or reason like many other viruses and related symptoms. Perhaps it is just my psyche needing to grasp onto to an explanation for this condition. On a good note however, after being on JOH for the past 6 mnths , I have now gone 3 1/2 months vertigo free, this time around taking the lysine without food. I had a 1 1/2 year remission on half of the JOH regimen and taking lysine with food so who knows if I am in remission or if it is the program that is working. I guess we will see what happens but I plan to stay on this and add an antiviral if it returns.

However, I am not symptom free and I think often times as long as people like myself are not having vertigo they feel they are in remission. I still have periods of imbalance and days where fullness and tinnitus are more prevalent so should I believe that I am in remision just beause the vertigo has subsided?That is certainly the symptom that we can all do without but it makes me wonder if I should add an antiviral to see if the remaining symptoms go into remission. Anyway, I would recommend an antiviral or the JOH regimen or both as a first line of defense as well as lo salt and perhaps a diuretic before pursuing invasive measures. Good luck out there

 

<<<I did not get a good response from him. He said he has been treating MM for over 30 years and his association has discussed this. He said that the idea of MM being caused by herpes has been around for a very long time and has been debunked. He is very skeptical of John's regime although he does recommend the bioflavonoits and Vit D.>>>

If you didn't live 2000 miles from me, I'd swear we had the same doc. They must be talking long distance.

 

I have tinnitus, fullness and hearing loss constantly. It never lets up. The vertigo is the one symptom that is intermittent. So for me, I consider it remission when I can go for a long period without vertigo. With the other three symptoms being permanent, I don't ever expect to have remission from them.

Over the years I have had remission from vertigo for no reason that I can determine. It has happened while I was taking meds, then vertigo returned while still on the meds. I have had remission while I was not taking any meds. One while drug free lasted 3 years!

For me there is no rhyme nor reason for why I get remissions. After several attempts at many medications and diet redtrictions, I am now medication free, don't worry about sodium, altho I am on the low side for just regular health reasons, don't worry about caffeine, but don't have it often. The pattern of vertigo remains the same no matter what.

Now I just go with the flow. I don't understand it any more than I did years ago when this hit me, but I no longer daily take medication into my body that probably wasn't helping me anyway.

 

Since I live in the same city as Skye, we recently had our annual Utah get together (sorry you missed it!). I hope you don't mind me sharing this Skye, but she was SO excited to have met this doctor and have him be open to the material that she took with him on antivirals. So, for me I am thrilled that she opened that door for me and others in this community. After this second report from her, I am making an appointment.

Last year she had heard of my horror stories with the most promenient OTO in the area, head of the dept at the U. Thankfully, she looked further and presented this to went to another. Perhaps This doc wouldn't have taken notice of his collegues if he hadn't heard it from a sufferer.

I really think that I would have given up if I hadn't heard of this second visit. I have been beaten down in my quest many times. Thanks Skye, for paving the way.

I know it my not work for me, or that he might not even give them to me, but hope is a good thing!

 

great news sky...and other who find relief from anti-virals...

I've tried anti virals several times for extended periods of time and no relief - maybe some people are resistant to anti-virals while others great success...

either way great news

 

quote author=Amethyst link=topic=20266.msg357138#msg357138 date=1247237774]
<<Hi TcWay, you might want to look into MAV (migraine associated vertigo). There are many here with it and a number of us with both MM and MAV. [/quote]>>

<<Good for you with the Tai Chi - I gave it a good try but had too much trouble with noise (beginner class indoors). I plan on trying again someday. In the meantime I do enjoy a lot of yoga - another exercises that's great for balance......body and mind. >>

Thanks for your response. I'll look into MAV- my gut feeling is I don't have that, for several reasons, but I'll look into it just to make sure I'm not missing something. Yesterday I meant another Meniere's sufferer in my area.- my first face to face with a kindred spirit! I'm thankful she contacted me and offered to meet. She' s had it longer and been through much, but it was kind of her to share with me and listen to my story too. I'm coming to grips with the reality of my situation in increments.

I haven't tried yoga, but I have a lot of respect for that discipline. I agree it's similar to tai chi in many ways. With both it's sometimes difficult to find a good teacher with an approach that resonates with you. I enjoy the movement and grace of tai chi, and it's roots in Taoism.

I'm reminded of a recent article I read about learning tai chi with a disability- one of the authors has a progressive, incurable and painful disease, he said: "CMT is part of who I am. It has enhanced my individuality, presented worthwhile challenges, given me many friends, and filled my life with insight. I do more than accept my CMT, I treasure it!"
I was kind of shocked to read that- then I shed a few tears. I will have to practice tai chi many years to be that philosophical!!

best wishes for happy moments of well being,
tcWay