Is there an organization for MAV?

Specific Illnesses & Conditions VM/MAV
1

If someone wanted to donate money to an organization for MAV, which would it be? My inner ear tests are all basically fine, so it wouldn’t be the vestibular organization, would it? Seems like it isn’t the regular headache foundation. So I just wondered if there is any organization that does research for our issues.

Thanks,
Susan

2

I only know of VEDA - the Vestibular Disorders Association - like you mention. They do have a section about MAV on their pages, it was updated fairly recently and shows that awareness of MAV is growing. MAV is a vestibular disorder even if you don’t have vestibular damage because it involves the vestibular system which is why we feel dizzy or have vertigo. As you say there are other migraine and headache foundations but they don’t really cover the full spectrum of MAV. As far as I know VEDA would be the best place to donate to but others here may know better…

3

Thank you. That was really helpful. Jem, I have exactly the same symptoms as you! I was diagnosed this year, but have had dizziness constantly since 2010 and am on disability due to it. But reading your signature was so comforting. Just had an EEG yesterday at the neurologist’s office and he showed me that it was typical for “migraine brain” but nothing else was out of order.

Susan

4

Hi Susan

Glad my answer was helpful. Sorry you have the same symptoms, it’s rotten isn’t it. Are you based in the UK?

Are you taking any meds for MAV at the moment? x

5

Susan, I read about your symptoms and testing. You said they did a ct of your sinusis, but did they do a detailed ct of your temporal bone? (0,6mm slides or less). You should try to have them rule out scds, which is a hole in one of the canals in the temporal bone. It can be fixed.
best regards,

6

My doctor says nothing will help. I take Relpax for the actual migraines along with Tylenol Arthritis. It does keep the worst ones from exploding. He says things like Inderal can make me dizzier. I’ve tried a lot of migraine meds for that part. But the dizziness is there all the time. What do you take? By the way, I’ve been dizzy 24/7 since 2010, but had dizzy episodes since at least 2006.

7

Thanks Arna. I will ask my neurologist or ENT at the next visit.

8

I take nortriptyline - it is my first med as I only realised I have MAV after a severe worsening of my symptoms this summer, having been dizzy for 3.5 years. I hadn’t taken any meds prior to that as I thought I had Vestibular neuritis and the advice is not to take anything for that just to do VRT. I am sure there must be a med out there that will help you Susan. There is a wide range of options as you will see from these pages on this forum. Good luck x