Hello everyone, I have been lurcking on this forum for several weeks. My husband has Meniere's Disease. He is 67 and his cochlear symptoms started two years ago (fullness, hearing loss, tinnitus). Last October he had his first attack of vertigo. It disappeared for two months and then on March 3rd he started having vertigo attacks every 2-3 days. Bad vertigo attacks. His ENT diagnosed MM on 3/4/2015 and prescribed a diuretic. BTW are there really MM patients helped by low salt diet and/or diuretics? During and after every attack (which basically means for the entire month of March) I did research on MM. We tried a round of steroids, no joy there. Attacks continued every 2-3 days. I kept a daily log of symptoms. I hit rock bottom earlier this week (I don't really understand it but after each of my husband's attacks, I was almost as drained and fuzzy as he was). That was when I found the link to Dr. Gacek's "A Perspective on Recurrent Vertigo" in a post from JOH. I sent it to my husband's internist, who called a couple of hours later and said he found the article quite interesting and had done further research and discovered that NIH is conducting a study on Meniere's and antivirals. He prescribed Acyclovir. David (husband) has only taken 3 800 mg doses and says the fullness in his ear is gone. I'm too jaded by the ups and downs of the last month to be anything but cautiously optimistic. Thank you to everyone, especially JOH and Vicki. And thank you to everyone for being there when I needed you.
That's great news I hope the antivirals are the answer for your husband. In the Uk doctors are too scared to deviate from anything that they have not studied. I asked several times for antivirals. I now have no hearing in my left ear but compensated by normal hearing in the other ear. Not complaining because my vertigo stopped 6 years ago probably at the same time my left ear became completely useless. Its great that you support your husband , some partners don't get it which also applies to other family and friends. Your husband is lucky to have your support.
wonderful news! David can have ups and down until the antiviral suppresses the virus and puts it in its latent state. Also when decreasing to next dose if David gets symptoms he should go back up to the previous level for a few more weeks then try again, he should keep trying until he can decrease until vertigo does not return. I had to stay on 1200 mg of acyclovir for months before I could get on the maintenance dose of 800 mg a day. You are a wonderful spouse being so involved in helping your husband with MM disease. I am also thrilled to learn the NIH is currently doing a study of MM and antivirals, I cant wait until its published! Good luck to David and you and please keep us posted Happy Holidays to all!
Not all UK doctors are the same anymore than all USA GPs are the same. But you do need to fight your own corner and present your case with the back-up studies available here, and elsewhere on the internet. I think that the trick is to ask for a trial over a limited timeframe. Treat it as a shared experiment between you and your doctor. I have found this to be a more productive way of getting treatments that are not ‘in the book’ such as AVs.
Vicki - thanks for mentioning the ups and downs on acyclovir. Today he has fullness and moderate 'roaring' and is tired. Your advice has kept me from feeling discouraged. He is now 4 days from his last vertigo attack, they were coming every 2-3 days. We are also pursuing the Upper Cervical Chiropractor route. We are fortunate that the only one in Maine is near by. We saw him for the first time on Friday. He did tests and x-rays. We see him on Monday for the results and recommendations. I have seen on other threads that people refer to seeing Dr. Gacek. Since we are in Maine and not far away I looked for him and it looked like he was retired. Does anyone know if we is still seeing patients? Still at University of Massachusetts Worcester?