So with MAV I gather that you can have 24/7 rocking on boat feeling and then episodes of intense dizziness from time to time? For me, over the 17 years I’ve had this, I have mostly had the constant rocking, but not much motion intolerance with it; I can play tennis, even basketball (though I don’t have my balance of old and looking up under the rim I don’t have my sense of where I am). The only “episodes” I’ve had is a “car sick” feeling in my head. After rest or sleep it would go away. But on Thurs. July 21, I got really dizzy–a combination of spinning, feeling like I’m falling, and strong up and down boat-like movements that make me nauseated and incapacitated. Along with it came motion intolerance (can’t move my head much without feeling yucky, fast images on TV and scrolling on computer make me sick, etc.). Furthermore, when I close my eyes to sleep, the dizziness gets worse, making it difficult to sleep (I’ve only been getting about 5-6 hrs of sleep, with lots of waking up, throughout this). I have had this “new” dizziness constantly now for a week and a half. Is this a typical episode? Can they last this long?
Afraid so. For me, that was the nrom until I got religious about the diet and was on a high dose of nortriptaline.
Before I had an MAV diagnoses, I went over 18 months in a constant 24/7 state. I finally got relief when I started taking migraine preventatives. I’m not taking preventatives any more, but I know enough about migraine prevention (diet/sleep/stress reduction) now that I can usually keep myself out of a 24/7 state.
@David Shapiro: Thanks for your reply. How long would your dizzy episodes last? And did they consist of incapacitating dizziness like I’m currently experiencing?
@Brian B: Thank you as well for your reply. What sort of dizziness did you experience 24/7 for 18 months? Was it the baseline rocking that so many of us experience “normally”/constantly, but with which we can still function? Or was it like the incapacitating dizziness like I have experienced only the last two weeks?
P.S. I can’t even walk at a normal pace because of the severe motion intolerance. I plod very slowly, one foot at a time. Also, the dizziness is with me all the time, even when I’m perfectly still, laying down, and not moving my head. It simply gets worse when I move my head.
ive a dizzy 24/7 for 2 years. Ive had times where i just cant function at all. I think im about to have another bad eposide can feel it coming on. Usually my bad eposides last 2/3 weeks. I also get dizzy lying down,sitting,standing all the time basically, although lying on one side sometimes offers relief. Im only on periactin low dose at the moment and have only been able to take meds for 3 weeks top then im off as i cant handleside effects. What about klopopin??(dont know spellling) some use it and say it works well for chronic attacks/dizzies. I havent been able to work out any trigger, it just seems random and no end insight to this crap
I’ve had it for a year now not so much the headache but a constant dizziness 24/7 that never goes away somedays do get better then others if that helps you at all, my doctors finally put me on Topamax I’ve noticied a little difference but haven’t been on it long enough yet to notice it’s full effects. It’s very frustrating I have 3 young children, have been let go from my job and sometimes it feels as though the dizziness will never end.
I have the dizzines you describe almost every day to varying degrees. My “good days” are extreme motion sickness/intolerance. I get queasy even walking and use a walker about 50 percent of the time because I can’t hold my balance. My balance on my left side is bad. When I stand, I feel like there is nothing on my left side holding me up or straight and that I’m going to hurtle into space on that side. I have and that’s why I have the walker.
I have trouble laying down. I have to sleep in a recliner or propped up on the couch. Every time I move, the room flips on me. I have trouble with visual vertigo, watching TV, reading etc. I do it, I just have to go very slow and look away when things on TV move or spin.
I feel like I’m walking on an uneven/bouncy surface instead of the floor. Total disequilibrium.
On a bad day, during attacks (even though I’m chronically in one that fluctuates) I can DEFINITELY tell the bad. The room rotates and spins violently. I can’t walk, I fall right over and hug the floor for dear life as it lurches under me. I vomit and sweat and shake. I get confused, slur, can’t see right or hear right, my ears ring, I get tunnel vision, faint, have intense pressure in my ears, I’ve gotten nosebleeds with some, I lose the feeling on one side of my body, half my face “runs” like tearing eyes, runny nose. I get intense nausea and sometimes can’t eat for days. I’ve had to go in to get IVs from the doctors during the worst of times. Last spring I got the flu and it messed up my MAV so bad I was very ill for 2 months, lost 20 lbs. half my hair fell out due to malnutrition etc. During these attacks, the only thing that helps me even a little is Valium.
Hope that answered your question that absolutely it can cause incapacitating dizziness and sometimes it can last for a day, sometimes a week, sometimes for me months. It’s very variable.