Getting straight to the point, I'm looking for a new ENT. Does anyone know of an ENT in Canada (in Ontario is even better), that is experienced in Meniere's and has been willing to prescribe antivirals? I'm not searching out antivirals, however, I'm looking for a second opinion on my current diagnosis and if they say it's Meniere's I want someone who's not reading out of a 50 year old textbook and willing to try the latest treatments.
Dear MrE, sorry, I can't name a Canadian doctor for you.H ope you'll find one helping you. In Germany, you would not get antivirals prescribed, if they don't find viral issues in your blood tests. The latest development here is to prescribe Betahistine in a higher dosis compared to the beginning of my "career" as a MD patient. 48 mg now three times a day, I'm quite satisfied with the results. Best wishes Lilja
Thanks for the feedback Lilja. My GP and ENT flat out didn't even want to hear about antivirals and a potential linkage to my condition with or without tests. I was tested though for HSV-1 and HSV-2 which are negative, but that's only one virus and we all believe that there's many others that can be at play here. I had Mononucleosis about 20 years ago so I very likely have Epstien-Barr (EBV) in my body. What positive changes have you seen taking Betahistine? Less vertigo episodes, less tinnitus, or something else?
Good morning, I live in the UK and I was prescribed Betahistine and it has really helped me alot. I don't get as many attacks as I used to.
Would you mind telling what your dosage is? I have been prescribed Betahistine but in a low dose and am not yet experiencing results
They have me on 16mg 2x a day, which is still less than half what you are prescribed. May be why I am not getting results. Thank you
"The" vestibular clinic is at Toronto General Hospital. Though I went there and while they confirmed the MD diagnosis, they didn't really offer me much else. Not interested in talk of viruses or diet or whatever. At least the doctor I saw. But there does appear to be a viral component. I can't get antivirals per se but I recommend the JOH regimen and lysine, lysine....but I've also found a huge impact of avoiding high arginine foods (lysine inhibits viral activity, arginine promotes it). So if you are eating beans, nuts, seeds (including alternative "milks" like almond/soy/etc.) and including coconut and coconut milk.....you could be just driving the car into the ditch so to speak. This has really helped.
I finally got into Dr. Parnes at London Health Sciences after a 2 yr wait. I had vestibular testing done there and got a diagnosis of atypical Meniere's (atypical because I do not have nystagmus, spinning or nausea and vomiting). I had previously been prescribed betahisitine but he prescribed 24mg 2x daily which I started. He also gave me triamterene/hydrochlorothiazide to try approx 1 month after I was regularly was taking the betahistine. I added that and I do feel it helps. We did not discuss antivirals so I'm not sure where he stands on that. I did ask about vestibular therapy and he said I could try it. It did help for me. I also don't go overboard on caffeine and watch my salt (I don't limit it but I do know if I've eaten too much I feel pressure in my ears). I do need to get regular sleep so I try to go to bed at the same time and wake at the same time. I do take melatonin and benedryl to help me sleep. I know the weather affects me (rainy today so I'm a little off). I really don't drink alcohol, maybe on a special occasion, but I feel it messes with me so I generally don't. Honestly, not a big deal for me.
Rubygirl and Rhall - thank you. After my last major episode of dizziness in early October I changed my diet, cutting out much of what others have mentioned. I've also been on the JOH for 1.5 months now. No dizziness episodes and generally less ear fullness and discomfort. My hearing remains down, but I consider any positive changes there to be a bonus. For the benefit of anyone else asking the same questions as me, another kind member of this board, shared the information with me that Dr. Mark Gacek, based out of Mobile, Alabama will do video consults. Obviously, as a Canadian it would be out of pocket, but having access to one of the experts in the field could be beneficial. Dr. Gacek, is the son of the (late?) Dr. Richard Gacek, one of the pioneers of the viral theory that is so often referenced here and other places.
Rhall, besides the ear fullness that you've mentioned what are your symptoms? Prior to discharging me as a patient, my ENT prescribed triamterene/hydrochlorothiazide (25/12.5 mg respectively). I found it didn't do anything for my symptoms; it didn't even make me urinate more.