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Heal your headache?


#1

I’ve read most of the book, but didn’t feel it touched on my 24/7 violent vertigo, nonstop rocking, like I’m on a cruise ship. I wake up in the middle of the night just spinning away, and the room is distorted, always uneven. The only peace I have is when I’m not awake, or watching TV and not paying any attention to the spinning.

I’ve been to John Hopkins, Cleveland clinic, and it’s the only diagnosis based on the hundreds of tests that have been done.

Does anyone else feel as sick as I do dizziness wise?

Tony

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#2

Yes Tony, people with MAV absolutely feel as sick as you do. I am one of them. Although there are certainly varying degrees of the level of disruption of this disorder in that some people can function (ie, work, have somewhat of a social life), others remain virtually bedbound, feeling as sick as you describe until proper treatment is found. I am so sorry that you and so many others suffer to the level you describe. It doesn’t seem fair. I have been battling non-stop 24/7 symptoms that have brought my life to a halt for 2.5 years now and am trialling meds.

I am curious what the docs said about your 24/7 rocking. Did they ever think you could have a spontaneous case of Mal de Debarquement? I have that symptom as well exactly as you describe.

Did the doctors start you on any meds?

All the best,
Lisa


#3

I also share horrendous sxs like you describe 24/7 for years, and my only peace is when I am sleeping. I have been dx with MAV by many top specialists. I am so sorry for all your suffering. This is such a rough disorder. Btw, I saw the author of Heal your Headache, who said that I have MAV.


#4

I have been told by the doctor at John Hopkins that I may have a case of Mal de Debarquement. I’ve always been extremely sensitive to motion with vertigo as a child as well, but about two years ago I had attacks that were far worse than my childhood vertigo. Anyhow, I’m terrified of boats, cruises, airplanes, and long car rides.


#5

I have had constant disequilibrium for 2 years now 24/7.

i feel like i have Mal de Debarquement but i’ve never been on a cruise.


#6

Hi Tony,
Can you clarify what the docs based their Mal de Debarquement diagnosis on as many of us on the forum have 24/7 rocking/dysequilibrium and feel like we are on a boat 24/7 as well?

Also, are you taking any meds?

Thanks so much!
lisa


#7

Lisa,
I can give you the doctor’s assessments, word for word below, but I am not exactly sure how he based his conclusions outside of me describing in detail what I feel.

Assessments:

Tony has a complicated problem. He appears to have long standing motion sensitivity with a possible migraine syndrome. He also has a long standing anxiety and social phobia. I suspect that his symptoms indeed are related to a combination of his anxiety state and migraine propensity. He also may have an element of the symptom Mal de Debarquement, the sickness of getting off the boat. I did encourage him in pointing out that these symptoms often do subside somewhat in age and that I don’t think that he had any ominous neurological disease…
This is a small paragraph that later goes on to what he recommends my doctor at home test me for next, like “a BAER and a CISS or fiesta MRI to look at the VIII nerve complex”

Hope this helps.