Well here I am. Just got tested last Monday for Meniere's, and unfortunately it was positive. Since that time I have done quite a bit of research, thats what brought me to this forum. About five months ago I started having my left ear clog up along with the typical pressure and ringing. Since that time it fluctuates. Some days good, and some bad days. I at first went to my family doctor, and with no progress eventually graduated to several ENT's. The last one being the only one who actually progressed to testing me. He thinks that I have Cochlear Meniere's, since so far I have not had any dizziness or Vertigo. He said there is nothing I can do except eliminate salt from my diet. I have been doing that since Monday, and must admit so far almost no symptoms at all. Reading through the posts I have to say scares the hell out of me. Doe's everyone progress into vertigo? Would love too get a clear answer on that one, if there is one! In a week I meet again with my Family doctor. I am fortunate that she is trained also in alternative medicine, and very open minded. She is going over a regimen of supplements and discussions in antivirals with me. Looking forward to that. Because at this point I am not having the severe symptoms, she will probably hold off on those prescriptions, I guess . My son is also a Doctor, and fortunately very open minded also. Although typically he won't have anything to do with treating dad Anyway I am sure I have bored all of you to tears at this point. If any of you have any thoughts or suggestions I would really appreciate hearing from you. Thanks, Mark
Mark, if your doctor is open minded, you should ask them what they think about TMJD causing ear symptoms. There are a few threads here that discuss it, an a lot of info online. Including a very active private Facebook group. " Meniere's Vertigo Tinnitus TMJ : Meniere's no more chat and support group". My symptoms have been been stable with no advancement to vertigo using NUCCA care. There is a school of thought that neck or shoulder misalignment can result in TMJD. Just know there are a lot of paths that you should investigate despite your diagnosis.
What you are suffering from could be a variety of things. ENT's in my opinion just take a stab in the dark. I would be interested what tests he carried out to come to his diagnosis. Doctors and ENT's know very little about our conditions. Menieres is idiopathic so how they profess to know what is wrong is certainly up for debate. One of the possible treatments is as you say antivirals. I hope it does not progress to vertigo but to try and preserve your hearing antivirals would be worth looking at. Great that you have a son who is a doctor. Perhaps he could have an influence on you being able to obtain antivirals if you decide to take that route. Ordinarily it is very difficult to get antivirals from doctors as they are frightened of litigation because antivirals are not in their medical books for treating menieres. In fact it seems that all a doctor will say is lo salt which is hardly revolutionary or helpful. Best of luck and wishing you well
I had an extensive appointment with my family doctor yesterday. I was quite surprised that she had really done her homework. She had taken a great deal of time to research supplements and anti viral's . She was able to actually locate studies of the effectiveness of many different medications and supplements. She did prescribe me an antiviral to start with. This in combination with John of Ohio's regimen is what I am starting with. She also prioritized different treatments in order of their effectiveness, based on clinical trials. She also ordered some sort of nasal spray that needs to be compounded in California. I will look up the name and post it tomorrow. Thanks for your replies Mark
wow your doctor sounds extraordinary! Can you tell us what medications and supplements she found effective in her research?
She has started me on Valacyclovir 1 gram three times daily. She said the controlled studies done on this drug for Meniere's were very promising in the treatment of the symptoms associated with this disease. As I mentioned, I am also doing John from Ohio regimen. Although she recommended that I drop the Lysine because it potentially keeps the herpes virus from replicating. But the Valacyclovir also does the same. Also she said that good results have been determined from combining high doses of vitamin c & Glutathione and Rambamipide. At this point we ordered the Glutathione in a nasal spray form. She said the pills were available locally, but the compounded nasal spray would be absorbed better neurologically. She said there were good studies showing Glutathione helps with brain fog. The Rebamiipide we are holding off on now, as it appears not to be available in this country. Honestly in one week I have gone from a person who takes nothing, to popping numerous supplements and a Valacyclovir. Sucks! Also even though I have been a careful eater, I now basically can't eat anything that tastes worth a dam. You don't realize how many things have salt in them. Haven't cheated yet. But a good hamburger or Taco Bell Burrito I am sure will get me one day.
Ive been on acyclovir and have been vertigo and dizzy free for almost 3 years now and I have MM for 50 years. I tried val but it did not like me I never heard of Glutathione and Rambamipide due they stop vertigo attacks as well or just brain fog? IMO taking few pills is nothing if it stops your symptoms. For me salt was never a trigger but daily intake of food higher in lysine than arginine is important if your symptoms are caused by an HSV. Good luck!
Wow, your doctor sounds awesome! Be thankful that you found someone who cares and does the research. Many of us have gone from doctor to doctor as most tend to just follow the standard protocol.....low salt, no caffeine, no alcohol, steroid shots or further destructive ear methods. I take Glutathione in pill form but have noticed no difference. I will ask my doctor about the compound spray. Is Rambamipide in pill form also? Please keep us posted with your progress and thanks for joining the forum
I had the ear pressure only for probably 9 mon to a year before I got my first vertigo attack. I went to numerous drs about the pressure but got no where. Actually took several vertigo episodes before I finally found a dr that didn't brush it off.
also, I have been on valtrex for about 1 1/2 yrs now with good results. It took me 8 weeks at the 3x day dosage before tapering down. Then one month at 2x day; then 1x day ongoing. I will share that for me, my first two months were filled with manufacturer Northstar. The next refill was Milan (white pill). With two days all symptoms returned and more. I called around and found pharmacy that carried and/or would order the Northstar for me. No issues. About 6 mon ago they filled in error with the Milan, same issue. So lesson for me is that my body accepts the Northstar version the best.