2 Yrs & Counting. Pls HELP!

Hey Guys,

I have had constant 24/7 dysequilibrium (as in the floor is no longer flat/feels like I’m walking on a trampoline/ feel like I just got off a boat etc etc) for almost 2 years now!

To cut a long story short I have seen every possible specialist incluing the very famous Dr Halmaygi in Sydney. Still not cured.
They can’t pin point problem but have suggested MAYBE it could be MAV. Dr Halmaygi prescribed Prothiaden which didn’t work.

Another doc has prescibed Periactin - has anyone tried this? And also suggested trying Topamax.

MAV has always been in the back of my mind but I never suffer from headaches. Is MAV really actually able to produce symptoms of constant dysequilibrium???
Please convince me it can, because then I will try every medication possible.

Which drugs worked for you guys? Please help me… I’m losing my strength. I just want to feel normal again. Honestly it would be a miracle.

Ella.

Hi Ella,

Yes, MAV can produce a sense of constant dysequilibrium but of course is not the only possible cause. Do not despair - as a patient of Dr Halmagyi you are in expert hands. It took me almost 10 years of misdiagnosis and investigation to get there.

I am guessing Dr H has done the barrage of tests on you and excluded various other conditions? Do you or anyone in your family suffer from migraines? That is a big indicator of MAV I believe. Don’t get distracted by the “headache” angle, many of us on this board (myself included) do NOT have headaches as part of migraine.

I too was prescribed Prothiaden, starting about a year ago. I started on 25mg, going up by a further 25mg every 10 days or so (from memory) until I got to 75mg. The first two weeks I actually felt worse, then very gradually began to feel better. A few months ago some of my symptoms started to creep back again so I went up to 150mg, which is the maximum dosage. Many of us on this board find Valium quite helpful, Halmagyi himself is such a fan he reckons it should be in the water! :lol:

Good luck and keep us posted.

Vic

I’ve had horrific disequilibrium 24/7 for almost 3 years. I have been dx by many doctors with MAV. you can surely have these symptoms with MAV. if you haven’t already, read “Heal your headache,” by Dr. Buchholtz. It really explains how migraine is not just a headache. I happen to have migraines, but many with this dx do not have a migraine history. I’m trying nortriptyline now and hope that it helps. it is a challenge to find a medication that helps, but many do and no longer have this awful disequilibrium. people surely do get better, and I hope you are one of them. lots of luck. keep us posted.
lisa

Lisa,
I read that your start on Nortri is not great, but I am hoping with all my heart that it gets even a tiny bit easier for you so you can up it until you feel great.
My thoughts are with you,
Penny

Hi Ella,

Yes MAV can be just as you describe. I had the constant being on a boat feeling for almost a year. Under control now with meds… nortriptyline, and the migraine diet, not perfect but the ground is now still. I have never ever had a headache, so yes it is possible.

Good luck,
Penny

Hi Ella,

This from the MAV fact sheets (sticky post above):

**[size=130]Migraine can occur even without headache[/size] **
Though rare, some people have migraines that rarely or never involve headaches. In other words, their migraines only have non-pain symptoms. You may have heard of so- called “ocular migraines,” and this is one example of a migraine that only has only non- pain symptoms (namely, visual symptoms) and no headache whatsoever. But any of the other non-pain symptoms mentioned above can also be the sole manifestation of migraine (Amos and Fleming 2000; Freedom and Jay 2003).

Best … Scott

thanks so much, Penny. Can’t wait for the day that the ground appears level again. your story gives me such hope.

Thankyou all for your posts.

Dr Halmaygi thought it was more anxiety that was perpetuating my condition. He mentioned that it could be MAV but i was only prescribed prothieden at 25mg.
When i felt no improvement i gave up after 4 months and gave up that it might be MAV.

I basically have accepted that i will have this forever, if a miracle happens then it will be a miracle.

I am going to try Topamax starting on friday. And try and gradually make it up to 100mg. I am hoping this will be the miracle i have been waiting for. If not, i guess i will try another med.

My mother suffered from really bad migraines so there is a family history there.

Its nice to know that i’m not the only one suffering from this. Because its so weird you think you are the only one in the world and no one including doc’s understand.

Ella x