One episode of nystagmus mav or vesitbular neuronitis,HELP

OK, I need help. I’m on Inderal (propranolol) beta blocker 20 mg per day. I think it’s making me worse so I stopped taking it. The Dr is not 100% sure if it’s MAV or vestibular neuronitis with permant nerve damage? I had nystagmus very badly once and had been holding my head to one side a few weeks before it happened. I have vestibular nerve dysfunction one side. I HAVE SEEN MANY DRs, HAD THE MRI AND STILL HAVE THIS VERTIGO. Tried Serc, Sandromigran, and nothing has worked! YES, I HAVE HEADACHES, BRIGHT LIGHTS MAKE IT WORSE, COMPUTERS, AND IN THE DARK I’M MORE OFF BALANCE. DIZZY 24/7 and I spent $1000s trying to get better.
** so my question is has any one with MAV HAD NYSTAGMUS??? **

I HAVE HAD VERTIGO FOR 2 YEARS AND AM SO DESPERATE!!! I got a cold or sinus infection which I’ve had for 6 months. It’s worse. I’m better than when it started but no where near functioning well. Info would be sooo helpful. I’M TRYING TO SEE HOW MANY MAV SUFFERERS HAD INTIAL EPISODES OF NYSTAGMUS SO I CAN TRY TO DETERMINE THE CAUSE. THANKS.

Hi,

I get nystagmus with my MAV. In fact I have had it severely when I’ve had rotational vertigo, but I also get a mild version called oscillopsia still, even though I’m recovered to a large extent.

As far as I am aware nystagmus can be caused by anything that effects your vestibular system, so it doesn’t rule MAV in or out.

oh thanks for replying im just desperate to get over this and get info, your almost recovered-How? :smiley:

Hi,
I understand your desperation it’s a rotten place to be, frightening.
Yes I have had nystagmus as well (only caught by my family) not a Dr…I also have daily oscillopsia .
could I ask how long you on the propranolol for?
speaking from my own experiance my symptoms also ramp up until the brain becomes accustomed to new medications.
I find if the meds make me worse at first, it often suggests that the med is doing something for the mav, however the general consensus is to ditch a med after 3 months, if it is making you worse or not working to deminish our symptoms.

there are so many meds you can try for migraine…
I’ve been on the medi go round trailing different meds for the past 5 years since my diagnosis, some meds have helped with managing my symptoms and some have only made the Mav worse or conked out.
No one med fits all Migraineur, especiaaly when it comes to dose…and if they dont work, it definately dosnt mean you dont have Mav.
as many people with Migraine … with or without pain , Find some meds difficult to handle.

Best of luck with finding the med that will suit your brain chemistry.

Hugs
jenxx