My visit to Mayo Clinic in MN

Hi Everyone,

I have not posted in a long while. As all of you know I was diagnosed with MAV in '08. It left almost completely for like 6 months. It came back after my husband’s diagnosis of cancer in Dec '09. My first span of mav was almost a year, getting better towards the last 3-4 months of that year. This span has been going on for like 7 months. BUT…I have been having 90-95% days lately :smiley: I have even had a few 100% days!!! I am still on Verapamil (about 60 mg) and the COQ10, VIT B.
So…When I was suffering with mav severely a few months back and fighting the anxiety it causes me as well. (thus ending up on Welbutrin 150mg in March)…I called Mayo, I was desperate for an opinion other than Dr. Hain’s. I heard Mayo is the best.
I had my appt. yesterday. It was a 5 1/2 hour drive. In a nutshell (2 neuro’s spoke with me for 2 1/2 hours…no tests were done, surprisingly) …

  1. I have not had headaches for 2 years…according to them because I am on Verapamil.
  2. My headaches were not migraines, they were clusters because for 18 years i got them 3 months straight, then for 9 months I was fine, every year. They had all the qualities of clusters…duration wise, excruciating pain in the face and cheek, etc etc.
  3. They said i have chronic dizziness syndrome instead of MAV because I got clusters not migraines.
  4. I was then told that if the rocking, dizziness returns, I should see Dr. Eggers at mayo. The neuro I saw said maybe he might say you have mav but what does it matter what we call it if you are feeling better?
  5. I made sure they understood i want to be 100% and that I am still getting whooshes of dizziness and at times an “uncomfortableness” difficult to explain when still.
  6. I guess i just have to deal with it and stay on the Verapamil. He said to call if I get worse.

I guess i will always have this chronic dizziness. It will most likely occur when triggered…by stress, etc. It is just a “misfiring” of the brain. UGH!!

Nance

Hi Nance,

Great to hear from you and your experience at the Mayo clinic. Also great to hear how much you’ve improved too. Is the Welby still going well? No side effects to report?

I’m off to LA on Saturday – 13 hours in a jet. Ugh.

Take care … Scott

Thats great news!!! I think what we have is a lifelong condition with ups and down like you said from triggers. The medications helps manage the condition just like diabetes or any other condition…sounds like you have a good sense of what medication you need which is great…Keep it up