Since diuretics did a number on my kidneys (which previously had been FINE) I am doing everything I can to stay off of them after 3 years on. In the 6ish months I've been off them though, my MM is really getting worse. My neuro-oto agreed to write me a script for Betahistine, to give that a try. I am in the U.S. so had to go through all sorts of hoops to get it filled. Of course since it isn't FDA approved, my insurance won't cover it so it's out of pocket. After trying 3 different local compounding pharmacies (including Walgreens, which the internet told me can always do it) I got it filled, but for a hefty price. I am now looking to transfer my Rx to an online Canadian pharmacy, hopefully for cheaper. For those on Betahistine: - My doctor wrote the script for a gradually increasing dose, 8mg 3x/day, then 16mg, then 24mg. Increasing every 2 weeks to hopefully avoid stomach issues. What dose are you on, and is it effective for you? -Does it help you long term, or was it a short term fix? I'm seeing significant improvement 10 days in. Sure it could be placebo... but as I take it 3x per day, I feel it wearing off and my ear filling back up after 3-4 hours... then I take the next dose and it slowly clears until the cycle repeats. Also, no vertigo since starting it. I am very, very hopeful. I have 3 young kids and things were getting bad enough I couldn't safely/reliably be behind the wheel to get them to/from where they need to be... let alone care effectively for the 2yr old.
One more question for the betahistine takers -- do you take the brand name (Serc) or or does generic work just as well?
My regimen started at a daily dosage of Betahistine from “4 tabs - 3 times daily + 2 tabs at bedtime” (total: 224mg /day) to “3 tabs - 3 times daily + 1 tab at bedtime” (total: 160mg/day) then to “2 tabs - 3 times daily + 1 tab at bedtime” (total: 112mg/day). Now, I’m at a comfortable “2 tabs - 3 times daily” (total: 96mg/day). I tried “1 tab - 3x/daily” but my Tinnitus noise started to come back so, I hit myself with a couple of doses of “6 tabs” (96mg) and the noise receded. I’ve been Meniere’s free since March 18. Fingers crossed, knock on wood, etc. PleaseNoDizzy: My prescription reads Teva-Betahistine (Betahistine Hydrochloride). _____________ Betahistine dihydrochloride (serc) is an immune modifier. It works, up to a point in MD because MD is an immune mediated condition. It works on histamine receptors and thus interferes with the inflammatory cascade. Older and less informed studies from the 60-70’s thought it just improves blood flow to the inner ear, but it doesn’t seem to do it effectively in other areas of the body so alternative mechanisms have been sought which explains both effects. Besides, there are other, much more efficient ways of improving blood flow such as heparin and other vasodilators. Heparin was once used as a treatment for MD incidentally. SERC is not approved by the FDA in USA due to its limited efficacy, where it is in many other places where contradictory results show its usefulness.
I was given a months trial of Betahistine (i'm from the UK) and during that period I had no fullness and I'd say my hearing and distortion did improve slightly. Initially tinnitus increased but soon subsided to below what I normally have. My symptoms fluctuate wildly on a daily basis so I've not ruled out a coincidental upswing but ones gotta hope I'm due back to see the ENT doctor in 3 weeks and will be reporting my findings and requesting a longer prescription.
never had stomach issues with any dose got mine most of the time from canadian pharmacy paid $50 for free lifetime shipping worked really well for some time and eventually stopped i do believe it kept me from severe vertigo episodes i just stay in a shitty state, off balance all the time with fullness,sensitivity,pressure have been off it a month and have had 7 vertigo attacks good luck to you
Pleasenodizzy and Steve Betahistine is a preventative. It took about 3 weeks for it to start to have an effect on me in 2006 and it did alot of good. It is standard treatment in the UK I wonder why it was just a trial for you Steve as I would say it takes longer than a month to truly work. I remember when my attacks of vertigo were particularly violent I told my ENT that I was taking more serc, up to 6 x 16mg per day. He said that taking any more than 3 x 16mg has no better results than the 3. What he did prescribe at that time was buccastem in tablet form that dissolves under the top lip between the lip and gum. Buccastem either shortens an attack or if you catch the episode early enough it can stop it from even starting. Buccastem was a life saver as it allowed me to have confidence in getting on with my life. Buccastem contains stematil which is what the casualty department injected me with the very first attack I had when I thought I was having a heart attack. My heart was fine, it was just the start of menieres/mav. Of course there are different variations in our vestibular complaints. I was grateful that the ENT introduced the buccastem but annoyed with him and other doctors that they would never prescribe antivirals. The best help I had was self help with a positive attitude and this great forum.
Hi Vicki No I didn't have heart palpitations. I didn't know what it was at the time with all the spinning and being sick and hot and cold sweats. It was my first ever episode and completely threw me.
Yes but you did mention a sense of a heart attack…and that was the onset of MM and MAV. The reason I ask is that MM and symptoms came on me over the course of a year but the biggest hearing loss was right after what I thought was a heart attack. Turns out my heart is fine just wondered about that extreme experience.
Sorry for the confusion Hollyflo. I think it was the horrible vertigo that I had during the first attack that made me think of all sorts of things. I thought what is going on here, am I having a heart attack. I read somewhere years ago that nausea and sweating excessively are also included in symptoms of a heart attack. The hospital checked my heart which was fine. Funny thing though they seemed a bit disappointed when my heart was okay, as though I had wasted their time.
^It seems to be helping for my fullness. On my bad days (which I still do have -- it isn't perfect) I am still getting full but to a much lesser degree. It isn't the head-splitting about-to-explode feeling I was having before, for years.
Thank you. That's good to hear. I know what you mean about the head about to explode feeling, that is how I am feeling at the moment. I had a couple weeks of much less pressure/ fullness but it came roaring back this weekend. I have my next appointment with my neurotologist on the 18th and I was wondering if I should bring up the idea of Betahistine. I guess it would be worth mentioning, although I am not sure how willing he will be but it doesn't hurt to ask.
RedBird11: My regimen for Meniere’s & Tinnitus "started" at 224mg of Betahistine a day and ,is now, 96mg/day. Oddly enough, but not surprisingly, knowing the unpredictability of Tinnitus, the noise level has, for the most part, disappeared, even with the Betahistine dosage being lowered by more than half. A couple of times I've noticed the Tinnitus trying to make a comeback. Jacking up the dosage from 2 tabs to 6 tabs (for a day, or so) takes care of it. Most North American doctors are still unaware of the clinical trial results conducted with high-dosage SERC. Here's the link again ... http://www.mediafire.com/view/lpb0v991ew69v66/High-dosage_betahistine.pdf The more documents you can show to your doc, the better your chances are of getting SERC. I had to enlighten my Otologist/Neurotologist to the very existence of high-dosage Betahistine treatment ... and he’s the ‘Meniere’s/Inner Ear’ specialist on Vancouver Island. Good luck, RedBird11.