Well this is a fun club to join

California Sun, you're absolutely right.

For me, the *fear* of an attack was sucking even more quality of life than what Meniere's took with vertigo, dizziness, nausea, tinnitus, etc. I had to consciously make an effort to try things even though there was a chance it could set off an attack, when the more comfortable choice was isolation and safety at home. For example, I went ahead with a trip to Mexico with my daughter, but carefully booked rooms that would not feel like a prison cell if I had to stay in. Toward the end of the trip the inability to manage sodium while traveling caught up to me with dizziness the last two days, so I laid low. But both daughter and I have wonderful memories from that trip. Seven months later I had laby surgery and now live without fear of vertigo taking me down.

 

For me, it isn't so much the fear of vertigo, it's that the other symptoms just make me feel so awful that I don't feel like doing anything or going anywhere.

 

Welcome to you, there is a treasure trove of info here just keep reading all you can. I use AV's as my main treatment, along with a Modified JOH (search that here good info) and Monolaurin and it seems to keep the beast at bay. Get plenty of rest, my diet doesn't effect my Meniere's to much so I try just to eat healthy and don't go crazy, exercise,stress is a trigger for me so I limit my stress, seasonal allergies also irritate my MM so I get allergy shots. Welcome again and ask as many questions as you need! Good Luc!

 

I gotta agree with Clare on this. I've been on a 30 day flare cycle the past year. I can feel the build-up to the vertigo events. Once at the peak of the flare, there is usually a series of 2 or 3 vertigo attacks. It seems I now plan my life around my flare cycle and I dread it. Problem is, now my Doc is not so sure it's just MM. Now I'm being treated for vestibular migraines. This will be another 3 month rabbit hole. While I hope the VM thing would prove true, I can feel the slow buildup starting to the next flare and I find myself hoping it hits before we leave for our week vacation.

 

Hi R.O.,

I saw a recent comment you made about ear pressure, I am just replying to it here as this is your thread and it may be easier for you to find.

I was wondering if you ever got the script for Betahistine.? That does seem to help me a bit with the pressure. I take 32 mg 3 x a day....though some people may need more, and give up before upping the dose. I felt a difference in about two weeks time...after I upped the dose from 16 mg 3 x a day.

I get it compounded from Sullivans Healthcare in Roslindale, Ma. It may be a bit pricier than getting it from Canada, but my dr prefers. Just wondering.

I can t really talk on the anti virals because the only type I can get prescribed are Mylan generic, which according to the forum are duds and I am not willing to pay $ 700 + a month for the name brand...at this point.

Best to you. Bonnie

 

Yes, I feel once the betahistine was upped to 32mg 3x a day I felt noticeable relief from the pressure, and vertigo attacks still may occur but less frequently and violent.

My ENT( in NY) totally supports the use of betahistine, but not anti-virals.

 

Alcohol is not a trigger for me either. Or maybe.....
Actually, when I'm having a "dizzy day", or being very off-kilter, a couple of drinks normally makes me feel normal. Walking becomes straighter and my walls don't need to worry about me running into them. For me, the falling barometer is the biggest trigger. And according to my doctor, "Yeah, we know that that really affects you guys, but we really don't know why." And he's the best I've been to so far. I live in Indianapolis.

 

I agree with everyone here. I've battled Meniere's for 32 years now & have lived a full and productive life - you can, too. I don't have much wisdom to share, and I'm definitely NOT a doctor, so take all of this with a grain of sodium-free salt, but here goes:

1) Find a doc who understands Meniere's. Not all ENT's are created equal! If you can, find one who specializes in Meniere's or at least hearing & balance. It made a big difference for me. In my experience, "regular" ENT's are very quick to diagnose Meniere's when they can't easily figure out what's causing your symptoms.

2) My triggers are autoimmune/allergy related, so what works for me might not work for you. I'm religious about taking my daily diuretic and avoiding caffeine, but get a bit lax about sodium. My first line of defense is always 2 days of Afrin, followed by a Medrol dose pack (steroids). A handful of time, I've had those much loved shots of steroids straight into my ear. These did the trick for me most of the time for 30 years when only my right ear was involved.

3) Diazepam controls the dizzies for me a good 80% of the time without making me drowsy as long as I stay under 7.5 - 10 mg/day. It's been a LONG time since I was first diagnosed, but I'm pretty sure it was one of my first prescriptions. Has your doc talked to you about it?

4) If there's a remedy out there (except antivirals, which I haven't tried - yet), I've done it - B vitamins, RingStop, etc. I honestly don't know if any of them worked, but I just kept throwing stuff against the wall until something stuck. I'd just recommend running it by your doctor just to make sure there won't be any unanticipated side effects.

Hang in there.