Nice to meet you Rich, sorry it has to be here on an mm forum. I would much prefer it occur on a vacation somewhere over a beer on a beach or something
Welcome, wish none of us had a need to be here, but as far as I am concerned your experiences, questions, concerns, and opinions are welcome.
Hi folks, I have recently been diagnosed with MD and I concur - it's not fun. The first attack I had was about 18 months ago and that was my worst as I had no idea what was happening and pretty much thought I was going to pass out. I went to my doctor and he put my vertigo down to a viral infection and gave me some Serc (Batahistine 16 MG) tablets to help. It took about 8 weeks to get back to normal so I stopped taking the betahistine. Then about 6 months later I had another attack which wasn't as bad as the first one but it did happen whilst driving. Clearly I pulled over and had to rest for a good hour before I could get going again. This time I thought I was just hung over - I have never suffered hang overs in my life but assumed that they had started with age. Then on 23 Feb 2019 I had my last attack which was horrible - not as bad as my first but bad enough. This is when I decided that enough was enough and went through all the testing from ENT, to Hearing and balance testing to Neurologist. Turns out that I was diagnosed with MD and I have now been put on the Betahistine 24 MG which I must take daily - doctor says that it needs to consistently be in your system for the drug to work. It is working but the first week on the drugs were not pretty. I have changed my diet and brought my sodium levels right down and have stopped smoking (mostly) plus am down to one coffee per day. One thing I struggle with is my alcohol intake but it doesn't really seem to make a difference. I have been reading a lot of pieces in this forum and haven't really come across anybody that speaks of betahistine. Does anybody else take this much per day? What's interesting for me is that I don't really suffer tinnitus and the fullness in the ear is only around during the time of my attacks. Also, when I've had an attack it generally lingers and leaves my unbalanced and unsteady for about 6-8 weeks after that. Then it goes away and I am feeling 100% for a few months. As you can probably tell from my writing, I am pretty confused!!!
I have experienced similar things. I’m still not 100% convinced what I have is MD. I had a vertigo attack about 10 years ago, but no fullness in my ears or any tinnitus. Fast forward about 5 years. Had bad tinnitus that lasted a few weeks and when I went to the ENT, he did a hearing test and said I had loss of hearing. Well yes, while I experience tinnitus, it throws off my hearing. Another couple of years go by and I have the tinnitus again after experiencing full hearing and no bouts of vertigo. Again I went to the ENT and they did a hearing test. This time they said my hearing had improved since the last test. Then a couple of times I’ve had a short dizzy spell, but again no ear trouble. Then about a couple of months ago I felt off balance...but at this point no ear issues. I actually thought that my new glasses were the problem. But had my glasses checked and all was good. Then about a month ago I felt really dizzy and a few days later the tinnitus started...very loud ocean sounds in one ear. Still felt very off balance so I went to see a different ENT (new insurance ) and he did a hearing test. Because I had low tone hearing loss ( again because of the tinnitus), he immediately diagnosed me with MD. After coming on here, I feel like a lot more testing should have been done before coming to this conclusion. For now I will go with that diagnosis and treat myself as such, but I have an appointment with a neurologist ( can’t get in until July...again because of my insurance ).i too am very confused.
Welcome to the new peeps. Sorry to meet under these circumstances but you’ll find this forum very helpful in getting up to speed on this unfun condition. Dario, betahistine isn’t as widely prescribed in the US as it is in Europe and other parts of the world. FDA revoked its approval a decade or two ago. That being said, you can have it compounded here or order online from Canada. I was on 24mg 3x day so 72 mg/day for several years. I’ve since had a labyrinthectomy so am off all Menieres meds.
When mine set in I had the fullness and a roaring jet engine in my right ear. It wasn't tinnitus, it was a jet taking off. Lol after three weeks of it, had my first vertigo attack at 11:00 am. First of many more to come. Had no idea what menieres was but I got educated real fast. Lol
I forget the details but I believe it was due to a lack of studies proving it efficacy. I think it reclassified the drug as an “inert substance” or something to that effect. It is widely prescribed elsewhere in the world. It won’t hurt you. Some question whether it helps.
Thank you - I really appreciate it. Before your labyrinthectomy were you very strict with your diet? The reason I ask is because after my first attack (18 months) I went back to my normal lifestyle as I didn't know I had MD. My normal lifestyle consisted of smoking, lots of alcohol, lots of caffeine and adding salt to pretty much everything. It then took another 6 months before I had a smaller attack. Does this make sense to you? I guess every person is different. Also, do you recommend a labyrinthectomy?
I was extremely strict with my diet for pretty much the whole 7 years. Under 1200mg sodium per day. When I did fall off the wagon and splurge, say on a piece of pizza or Chinese, I’d be miserable for days after. It just wasn’t worth it but I had to repeat that mistake many times before temptation would lose the battle. Caffeine also, had to go. It was rough. The labyrinthectomy gave me my life back but it isn’t for everyone and it’s a drastic step to take. You lose all remaining hearing in that ear. I’m now single sided deaf. It was months of work to get back to normal ish balance.
Thanks. I am going to see a vestibular physiotherapist as I have many more questions. I still cannot understand why I have been ok for (approx) 6 month blocks whilst eating and drinking anything and everything and then all of a sudden...BANG! Very confused
That’s one of the most frustrating thing about this disease. There’s often no rhyme or reason to it, even the known triggers. You might be fine eating half a can of Pringles one day but the next week, it knocks you over. There are so many variables at play it’s hard to track what affects what, and sometimes it’s a threshold you are dealing with. Other times it’s imperceptible (to other people) changes. Since MM struck I’ve been very sensitive to changes in barometric pressure. 24 hours out from a storm it messes with me. Like the dogs who can freak out before a tornado lol.
Dario, nothing I tried with my diet had any impact on my symptoms. I do have really bad seasonal allergies that I get shots for that I feel impact my MM. Also stress and lack of rest also play a major role on how I feel.