Does anyone know the prognosis for people with mav? Do one usually get better or worse over time? Can mav be completely cured? At this forum I read about people beeing ill for so many years, but I hope that this forum is biased - maybe people who get well (or at least better) stop visiting these forums (I know I would have)? Now I’m trying my third migraine preventative drug, but I can’t say it’s helping very much(but I think it has some effect - I know I was feeling worse at this time of year last year). I would love to hear from people who has gotten well (or at least a lot better) from this disease…
Hi Anette
I was diagnosed with mav last August after i was told i had {A typical Meniers } I have never sufferd from migranes is there a cure how knows.
But you cant let it get you down, i have good days and bad days i think we all do try to keep possative and take one day at a time If there was a cure im sure we would all know about it .
Regards janet
I was diagnosed in 2006 with “Migraine Eqivalent”. which is the same as MAV but different descriptions are used. I have been suffering with this condition for 15 years. The good news is that things do get better but at a snail’s pace…or atleast for me. Some of the progress that i have made is i don’t have the horrible vertigo episodes that i use to have with vomiting. The last 3-4 years i have an occasional mini-vertigo spin and i generally do not get sick. Also…the Fog isnot as severe as it use to be. I am able to be out and about in movie theatres, concerts, etc and enjoy them till the end. Years ago…there were times when i had to leave a movie theatre for fear that the room was going to spin. Also…i am on much less medication. The not so good news is that i am still far from back to normal. My head continues to feel verty tight inside with a throbbing, pultz like sensation. I don’t have the classical migraine…my headache symptoms are mostly a rocking motion sensation and Intense Tension in my head…particualarly on the right side of my head. You must keep moving forward and keeps your fingers crossed that a cure or near cure will be here someday. I am only able to work part-time.
this is off topic, but Joe, i think you’re the only one who mentions, much, that tense feeling in the head. That was one of my first symptoms. I used to describe it as a pulling sensation, wasn’t sure if it was inside my head, or on my scalp. I have that tense feeling all the time too, mostly on the right side. I sometimes I think of it as a headache without the pain, or a substitute for the headache, as it is exactly where my headache would be.
I first got spinning vertigo and migraines in my teens - and the vertigo was pretty bad for some years but it has got much, much better over the years since. At one time is was a constant daily thing for me - now I have odd days of vertigo, or very short attacks which go as quickly as they arrive, often in between the migraines.
The severe spinning that keeps me housebound for a week or so now only visits about every 1-2 years. So all in all vertigo does not disrupt my life anywhere near as it used to. Not allowing myself to get too tired really reduces the vertigo occurance enormously it seems. I tend to struggle with managing the migraines more now - but that I think that is down to a stressful lifestyle and hopefully that will change in time.
this is off topic, but Joe, i think you’re the only one who mentions, much, that tense feeling in the head. That was one of my first symptoms. I used to describe it as a pulling sensation, wasn’t sure if it was inside my head, or on my scalp. I have that tense feeling all the time too, mostly on the right side. I sometimes I think of it as a headache without the pain, or a substitute for the headache, as it is exactly where my headache would be.
Julie
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Julie,
Just wanted to comment that I expereince the same thing. With some gentle massaging I am sometimes able to work it out, like a tight muscle.
If you look at MAV like other migraines, for most people migraines eventually go away, or decrease in frequency. I doubt if I am one of those people since I have been experiencing migraine variants all my life. But who knows, I may get lucky some day.
When i was at my worst, i would actually have intense tingling along with the tense feeling in my head. The tingling really felt like it was inside my head. no massaging helped. It would just have to go away by itself. That was really a strange feeling, like my brain was tingling.
Julie…i don’t have the Tingling inside my head but i do have the Tension, Tightness and sometimes Pressure are there…particularly on the right side. I have this Wave-like Motion and or Rocking Sensation that is very bothersome. It’s like having a headache…you know with the pultzing or throbbing and with those feelings brings on Motion. If i don’t take one tab of Xanex per day i will feel like i am Deep Sea Fishing which is extremely uncomfortable.
Yes, I have, for over a year, been saying that I feel like I’m on a boat in a rocky sea - and I don’t like water! Sometimes I feel like I’m in the water. I’ve gotten tired of saying to my husband - I never knew it was possible to be this sick and still be alive. I really did think I was dying when I was at my worst.
I’m glad we’ve both found some treatment that at least helps us get thru the day. I’ve come a long way in the last three months and I’m hoping for more.
Julie…sometimes i also feel like i’m in the water too. It’s kind of like when you walk into the ocean with water at mid-chest deep…and the little waves sort of hit you from every whcih way…well sometimes that is how it feels inside my head.
I am glad we have made some improvement and am hoping for much more!
Ugh, this forum is depressing!
Can any of you watch TV? :? I sure can’t.
I was hoping that if and when I get a diagnosis, things would take a turn for the better. So far the tunnel looks pretty dark. I should probably move to the “success stories” thread now
Julie…well i must confess…taking a bath with the water moving around does not bother me …BUT…last summer i decided to try swimming a few times at my gym and just standing in the pool while the waves of water moving around did aggravate my condition. I sure hope we return to normal one day!
8 years ago, when my symptoms first started up and before I had a diagnoses, I had problems doing all sorts of things including watching TV, and playing certian types of video games. My body soon adjusted though and I was able to deal with most visual triggers better even without medications. Since I recieved a diagnoses, things have gotten much better and I only have problems during flare ups.
If there was a cure im sure we would all know about it .
