Newbie

Hello all,

Have finally come here after a long journey that started as suspected MS. It now seems the Drs/Neuro think I have MAV.

Have been suffering more what I would describe as balance issues rather than dizziness and have had little to no actual migraine pain. This has been going on for 7 months now, constant every day. Feel odd pressure in left side of my head, always fail a Rombergs test, off gait at times and generally feel rubbish!!!

Had CT clear, MRI clear and ENT no issues. I do however get aura migraines about 2-3 times a year and they believe that that is enough to dx me with MAV??

Have had several drugs to no avail and have just started Topamax.

Anyone relate???

Matty, Edinburgh, Scotland

Hi

Welcome to the board. It’s very common for people to experience migraine without pain - just like you had auras with no pain so people can get dizziness/vertigo/balance issues without actual headaches. Migraine also changes over time, so it can move from manifesting in one way to taking a new form. I used to get pain in my face, which then turned in to MAV. It’s a misconception that migraine means pain, it can mean many different symptoms. The pressure in your head is familiar to many of us, myself included.

If you have had the MRI, CT and they’ve ruled out MS, with your history of auras it does make MAV likely. There aren’t actually that many things that can cause balance issues and migraine is a common one, although until recently this was something most doctors weren’t that familiar with - many still aren’t.

I don’t experience balance problems as such, more vertigo and general dizziness, although there are certainly members on the board who do have big problems with balance.

The key is to find the right drug - what works for one person doesn’t for another, it’s trial and error trying to find the right one. I tried a number before finding the drug that worked for me, so don’t despair if you don’t hit on a solution straight away.

H

Thanks for the reply.

Must admit im at my wits end and the drs dx was more a last resort as they really dont have any idea!!!

I just hope i find something to give me some relief but i know this can be a long journey!!!

Sorry to jump in on thread but Hannah is that you from dizzy times? What med are you now ? If its the same Hannah how did you go with ami ? as its making very tired is that normal?
Matty keep positive things will get better xx