Does anyone ever get back to normal with MAV or is this something we will need to take meds for and avoid foods and “manage” for life??
Personally, for me it’s evolved into something I believe I will have for the rest of my life. But, there was a point about 5 years ago where I couldn’t function at all and was much, much worse. Now with klonopin, I can work and play tennis. I do have limitations, and they frustrate me tremendously. I think we are all different, and the disease has a wide spectrum and co-morbidities, and I’ll bet the people who get over this aren’t on this forum. So, we have a “selection bias”. I know for years I had low grade symptoms and was able to ignore them, but a bad bout of BPPV pushed me over the edge. I had my first episode over 30 years ago, with sudden hearing loss in one ear, so it took a while for things to degrade.
I find it very frustrating to live with a hidden, chronic illness that impacts me and limits me. I can ignore it at times, but the low grade symptoms are there all the time, so it intrudes.
I just played doubles tennis with some good players. It was a good game, but I got dizzy serving. It is what it is. At least I could look up and stay in the game. Standing on the side lines I felt unsteady. I do find tennis helps me overall, and there were times early on where I nearly vomited when I played and could barely move my head. So, I guess I have to be grateful for small victories.
In summary, I think there’s no one answer, but for some of us it’s chronic, and I’ll bet others recover or compensate.
Kira
is the klonopin for anxiety or to stop your migraines?
The klonopin was prescribed by the neuro-otologist I saw when I first became very dizzy and nauseated–true vertigo and low grade dizziness–after an episode of BPPV, made worse by rigorous vestibular rehab. The dizziness and anxiety are linked. I remember waiting to see the neuro-otologist, and looking up, and getting a spin, and my heart started to race, but I didn’t feel anxious. It’s when I realized that when you feel like you’re falling, you physically respond with a fear response. And, then there’s the fear of getting dizzy. I was always a worrier, but never was diagnosed with having an anxiety disorder.
He made me push the dose up, and I resisted, but I was so sick and nonfunctional. He wanted to go to 3 mg/day. I couldn’t stand that dose, but was at 2.5/day for a while. I switched doctors–to an otologist, and we weaned down to 2 mg/day–divided into 1 mg twice a day–and I’ve been trying to cut down lower, but haven’t been able. I saw my primary doctor the other day, and she didn’t recommend pushing it down. My ENT said I could try it VERY slowly–and that’s my goal.
From reading the Mdds site recommended by Jenny—because I do keep moving after elevator rides and boat rides–most people with Mdds take klonopin at a dose of .5 mg twice a day.
The neuro-otlogist agreed that I have mal de disembarkment, along with vestibular damage from a virus. The otologist added the MAV diagnosis. And due to the ear damage, I get episodes of BPPV, but some gentle Brandt-Daroff’s at night keep it at bay (recommended by my otologist.) It’s a jumble.
I don’t get obvious migraine headaches, but there’s a strong family history of them, and after the MAV was suggested, I realized I got some headaches when I was sleep deprived, and sometimes smells bother me.
Kira
Because MAV is a migraine variant, it is hard to say. For some people that get migraines, it is only for a relatively short time (a few years or so) in their life. For others, migraines are a lifetime experience, increasing and decreasing in frequency and strength throughout their life.