New to this board but not MAV

I know a few people like Scott and Adam from another board. Scott let me know about this board.

I had my symptoms for 5 years where I had dizziness, blurred vision, mild nausea, mild head pressure, anxiety. I was originally diagnosed with anxiety and depression and then a Vestibular Disorder probably Central by a Neuro-Otologist. I went to a million doctors before being diagnosed including MRI and MRA of the brain, CT Scan, MRI of the spine, Neuro-opthamolgist, Neuro-Otologist, Endocronolgist, infectious disease. All test were normal. The only finding ws a small pituatary cyst and 3 endocronologist said it was normal. So I went for VRT Rehab for 1 year and then my Neuro-Otologist sent me to a Headache specialist. I am a 36 year old man , married with one child and this started when I was 31. My headache specialist runs the headache institute and St. Luke roosevelt in NYC. He diagnosed me with MAV after a 4 hour exam. He added Verapamil to my Zoloft and Klonopin which I was on for the anxiety and depression. He said I improved a little as I was treating the MAV indirectly with Zoloft and Klonopin. That was 3 years ago. Within 6 months I was 95% to 100% for 1 year. He said 2/3 of all patients can break the cycle and come off the medication. I wanted to with the weight gain. Six months later last Sept I had a major relapse. He put me back on Zoloft and increased the dosage from 50 (what I was originally on) to 100 and increased my verapamil from 180 to 240. By this past summer I was pretty stable again. My wife and I have been trying to have another child for the last year and she went to a fertility specialist who said Verapamil can impact motility of sperm. Being we want another child I came off V in August and switched to the bet blocker Nadanol. I have been on 40 mg 4 weeks and 60 mg 2 weeks. I felt lousy 10 days after the switch. I have improved but I am still suffering. Like 80% to 85%. The weather is horrid in NYC so the last few days I am bad… My wife decided to go thru with IUI and the fertility specialist said I can go back on Verapamil. My doctor said since I have improved a little let’s wait a few weeks on the higher dosage and we can always go back on Verapamil. He said 3 more weeks. Today I am symptomatic and depressed that I am going to deal with this forever and never live a life not being uncomfortable. My doctor is great and caring. He and every doctor on his staff has a migraine condition. He lets me email him with any questions and gets back to me that day. He runs a MAV support group once a month with speakers such as biofeedback therapists, accupuncturists, pyschologista who all specialise in MAV. I also go for a deep tissue massage and accupuncture and see a chiropractor once a week and find some relief from that although temporary.

Currently no more dizziness. I have mild blurred vision, mild nausea and head pressure. It does not stop me from doing anything but I am uncomfortable at times.

That is my story and any feedback is appreciated.

Howie

Welcome to the board Howie!

Just a little confused because you wrote “but not MAV” in the title but you do have MAV right?

Best … Scott 8)

Hey Scott:

I am new to the board but I am not new to MAV…

Sorry… My official Diagnosis was Central Vestibular Dysfunction by a Neuro-Otologist which was then diagnosed as Vestibular Migraines or MAV after all tests came back normal a few years ago by the Headache Specialist I told you about

The weather changes in NY are killing me

— Begin quote from “howie1”

The weather changes in NY are killing me

— End quote

In about another month or two, I will have the same problems here. I am always more symptomatic during the winter, and especially during severe weather changes in the winter.

Brian

Welcome Howie!

Glad you’re feeling relatively well with this monster, despicable, horrendous, evil illness (those were all the words I could use and not be banned from the forum) :slight_smile: you’ve had some good luck along the way, including knowing Adam and Scott! I hope your luck continues.

Welcome aboard!

Brian,

i was thinking of you yesterday when we got hit with a few inches of nasty deep wet snow and wind and freezing temps. i’m glad you didn’t get hit with it. I had to shovel that stuff and the extra exertion alone really got me rocking. And it’s only October!

Julie