My story, hope this helps newbies finding their diagnosis

Hello, I’m a new member here, however Migranes and vertigo is something I’ve lives with for almost 30 years. When I was 8 years old, I had what I called a “earth spinning sensation” in which I thought everyone around me was feeling. It wasn’t until I looked out the window to realize the world wasn’t spinning, it was just me. My parents took me to about every doctor possible, and I went through sleep tests, MRIs, cat scans, blood tests, you name it. This dizziness was unique in the fact that is was 24/7, never ending ride. I remember My father stayed in my room for at least a year as I slept angled to my right, to counter act the room turning. This went on pretty severe, but as the years past, i either got use to it, or it got milder. I honestly cannot tell you which answer is correct, perhaps both. I have always been sensitive to motion, I never attend rides, fly airplanes, but I’ve been on a lot of cruise ships, which was torture at times. At age 12, I remember having some of the worse headaches of my life. They actually put me out, to the point that the only cure was IBprofin and sleep which would usually kick it. By the time I was in my late teens and twentys, I drank a lot of alcohol and hated myself for the spins that came with it. I knew I was torturing myself but I wanted to be socially normal and because the dizziness wasn’t so bad anymore, the spins always went away when my hangover left me. Fast forward to age 28, my wife had our first child. During that time I was extremely nervous and stressed. Looking back, I have no idea why. I am naturally the most anxious person I know. Well literally the day we took our little guy home, I knew something wasn’t right. I was so dizzy that I felt like I needed sleep, and so I went to bed when my wife needed me most, only quickly to find out that did nothing. This “new dizziness” was different, it was violent and I panicked. I saw an ENT, went to the ER, and took about a half dozen medications that did nothing. I was then given more testing in which everything turned out normal. I couldn’t enjoy my sons first few months, nor could I barely work. As the weeks went by, I had to go to work or I would lose all my business accounts, and I did so with a struggle. I remember thinking I was going to die, that this is so wacked out, and there was no way I didn’t have a horribly disease. Brain tumor was my favorite phrase to google…
As the years went on, again I became use to the dizziness, and clonozapam was my drug of choice. I had been taking that for years prior for anxiety, but now It’s a daily dependence to calm me down, and suppress the dizziness. Headaches came and went unrelated to the spins, but they are terrible. The vertigo ,again, is 24/7. I can wake up in the middle of the night and see my room angled and turning, followed by the rocking of a boat. It’s insane as most of you know. Well I am now 37, and the dizziness again is usually something I don’t even think about. The headaches are cured with sleep, IBprofine and time, and unless I think about it, it’s not so bad and I can function.
About three days ago, I drank so much red wine with my wife and woke up with the worse headache and dizziness spells I can remember. It seems my old friend has found me again, only to torture me some more. However there will be no doctors, ER visits, or scans. I have accepted my curse, and I will wait this one out. Although I am writing this while I am on the ride of my life, I pray this might help someone compare what they are going through with my story. I apologize about how long it is, and of course for the spellings and grammar mistakes. Also, I didn’t go into a lot of detail about medications and testing, but I did drive to John Hopkins and officially got diagnosed with MAV. Any questions, I’d love to answer . Thanks for listening …

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Thank you for sharing, Tony.
I have had some form of dizzies/vertigo on and off for almost 50 years - have had little medical intervention, except for an operation some 40 years ago, which appears to have halted the deafness, but not the symptoms.
I also concluded many years ago that this is my life and the best way is to ride out the bad times and enjoy the good to the full!
I am ever grateful that I have not had it 24/7 for all this time!!!

Thank you for the reply! I enjoy reading all the stories and suggestions on here and it makes me feel I am not alone. My heart and prayers go out to everyone here.


hello Tony
I also drove to John hopkins and was diagnosed by them as well with MAV. my doctor was Amir Karrutman. Are you in the DC area? what did you think about the testing there?

Thanks for your story and your courage! I would say that alcohol is the single worst thing for my vertigo. It is at the start of every single bad episode. If you can, try going off it for a while. It’s a drag but it might really help. Good luck!!! PS Red wine is the very worst!

Thanks for sharing your story - sorry you have suffered for so long. I have had this crazy condition for 3-ish years and that is too long for my liking. I too think that acceptance and just powering through each day has been the best “medicine”. “Suck it up, Buttercup” has become my personal motto. Lots of people have it a whole lot worse than me, and I frequently remind myself to be thankful for the less dizzy moments/days. I hope you can enjoy some dizzy-free days with your family. :slight_smile:

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