After some 25 years of Vertigo Free Meniere's I didnt even bother telling people I had it because I considered it something of an invisible disability. Now- it has returned so forcefully am finding it hard to cope. I coped with the tinnitus and lost my hearing in the left ear. But the vertigo is so frightening and devastating. Have had about 10 attacks in one month - one while at work, supervising 200 children. And 4 last week when we were on holiday in California. It has changed me (temporarily I hope). I am afraid to leave the house, not drive and recently when we went hiking in the desert I was afraid to walk more than a mile, for fear of an attack. Nobody aside from my husband understands yet everyone has their opinion and advice! Serc is not helping. Nor the hydrochlorithizide. Finally someone referred me to Johns Regimen. So I would like to start with the lemon bioflavinoids. I've been taken lipoflavinoids for years, and they dont have impact anymore. My question is: I want to start today, asap, the next hour, the next minute, However to order online will take a few days. The vitamin shops here are selling something called Citrus Bio Flavinoid by Natural Factors Would this be the same? John if you are there, could you advise? There are some stores open today. And I would like to start with this and perhaps the Lysine? Thank you all - Jen
Hi Jen, I know how you are feeling. I was in remission, albeit only 8 months and MM came back. Others I am sure will weigh in but you need to get the lemon flavionoid, not citrus. There is a difference and it will most likely not be effective. Good luck
Hi Jen, while we wait for JOH to answer your questions, here is his regime and thread in our DB http://menieres.org/talk/index.php?topic=44.0 Also if you can try and get a script for an antiviral preferably Valtrex or the generic valacyclovir if not then acyclovir (acyclovir is what I take) and been symptoms free for over 3 years since taking it. here is Dr Gaceks study and on page 104 are the doses, bring this to you Dr. they seem to be resistant in prescribing an AV for MM http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
Read closely the latest, most successful version of the regimen, here: http://www.zoominternet.net/~kcshop/JOH.pdf It lists the authentic lemon bioflavonoids. But the root cause of almost all Meniere's is an active herpes virus infection of the inner ear or its associated nerves. There are only two things that can suppress the activity of these viruses: adequate lysine (as described in the URL above), and a properly prescribed (adequate dosage, for adequate duration) antiherpetic drug. I suggest that you attack your symptoms with everything shown to bring relief, a) all of the substances listed in my regimen, and b) a prescribed antiherpetic. For information on the later, scrutinize the info here: http://menieres.org/talk/index.php?topic=557.0 You can start on the lysine just as soon as you acquire some. Extremely safe. Let us know how all of this progresses. --John of Ohio
You guys are awesome. I send hugs from here. It gives me hope I never had and as a writer I shall be doing my best to broadcast Menieres. In regards to the products here in Canada - they are different, aside from the Lysine which I have just started. Also does fresh grated lemon rind help too? Jen
Hi Jen, I live in Canada and am able to get everything on the JOH regime. I Oder everything online and keep a good supply. Let me know if you have any questions on where.
Re: Happy To Have Found You ! New Question Hi Yes Tdoak. That would be very helpful to let me know where you order here in Canada. Also have members found that they have been able to drink coffee and alcohol again? Not that I'm a big consumer of either. But do love a glass of wine every so often and coffee. I have cut out all caffeine and wine for the past month. Thanks again,
Hi Jen I'll second all the recommendation to try antiviral. Research it here. There's a lot. I'm sure other posters can lead to the information you need. Good luck to you and glad you found us.
Nice to see a few Canucks on the forum. I am in AB. I can have an alcoholic drink with no problems, sometimes it even helps with the "half bubble off" feeling. I cut out caffeine for 2 years, didn't seem to make any difference so i went back to 2 cups of coffee in the am with no ill consequences. We are all different, what one can tolerate sends another into vertigo. Very frustrating, you won't know how it affects you til you try. Maggie
Hi, Yes it is nice to see some Canadians here. I am in Ontario. I cut out caffeine 3 years ago. Not sure if it helps but I now drink herbal teas which are better for you....I think I did drink pretty regularly (beer only) but have recently cut it out. Trying to see if it was a trigger.
Thank you. Feeling quite down - I know things take time - just so unused to having my life changed. I just had a brief dizzy spell at work. Almost fell on a group of children. I instictively sat on the gym floor. Now I feel giddy but am at home. I seem to have one vertigo free day and that is it. Sorry to whine here - = ( just hoping every day that things will change.
JenW, Sorry to read that you are having a tough time right now. What dosage of serc are you on? There are studies that show that serc is most effective at high dosages, from 288mg, to 480mg. When I was on it a few years ago I was taking 96mg daily and we thought that was high. Keep searching, try antivirals, many are helped by that. Best wishes for you to find relief. Maggie
You are not whining. Vertigo is AWFUL. The fact that you have it all but one day is unimaginable. I hate it with passion and I have it erratically. I hope you find some relief.
Jen no need to apologize, that's what we are here for. It's a life altering disease. I agree with Maggie about the proper dose for SERC but if you can get Valtrex I would give that a try many of us get symptom relief taking an antiviral. Dr Gacek has a 90% success rate with antivirals in his clinical practice. I hope you feel better and hang in there. It takes time but with trial and error most find relief.
I had an attack tonight, volient vertigo. Luckily I was lying down. Two attacks in 5 days after 8 months feeling good. I am going to up my Serc and if it helps.
So sorry to hear that Tdoak. In regard to the serc - my dose is quite low I guess. 50 mgs twice a day. On Wednesday I am going to my ENT and will be producing the info for Valtrex. I really respect him a great deal more than my physician who knows very little pharmacology. Incidentally, my husband seems to think that there is also a flu bug going around right now that is causing vertigo. 3 different people who do not have Menieres have had vertigo. I know that I began with flu and coughing in early Jan and the vertigo attacks started from there.