Update, haven't posted in a long time

Hey everyone -

I am here to report that I am still doing great! I am still on the Verapamil. I have been on a mini vacation earlier this month. I am able to go out to a fishing/hunting club we belong to about 45 minutes away. I even went on a boat the other day! I can once again go to the stores and all sorts of activities. I have only a few “whooshes” of dizziness here and there. They are very minor and short lived. Thank God nothing spins, just a slight dizzy feeling every now and then. It is totally tolerable though.

I just wanted to let everyone know that there is hope for this condition. It is possible to get your lives back. I never thought I would ever be rid of the rocking, heavy headed feeling, 24/7 dizzy feeling, vertigo, fatigue. I believe it was back in April, 4 months after starting the Verapamil, I began to feel like my old self. I am so grateful and thankful for every second of my “normal” life now. My family is so happy to have me back. I have also gotten rid of the anxiety that accompanied the dizziness. Don’t get me wrong, I sometimes get anxious and worry it will come back. I had a year of complete hell as you guys can understand.

I am so busy lately, I think I am trying to make up for the terrible summer I had last year. This forum helped me so very much. I just wanted to let everyone know to think positive and have faith. I pray for all of you and I pray everyday that I am over this terrible nightmare.


Nance, that is great to hear! Keep it up and I wish you the best. Ben

Hi Nance,

Fantastic news. If only Verapamil worked like this for all cases of MAV. Just boggles the mind how it can kill MAV in one person but do very little in another. It’s almost like winning the lottery to find a drug that actually works for this junk.

I’m going to fill my Verapamil script quite soon actually and try to tough it out.

Thanks for keeping in touch.

Scott :slight_smile:

Hi Nance,
I started to cry when I read your success story. I was so happy for you and also happy that there might be a light in this tunnel I in. I started having dizziness in March…but it was low grade and more annoying than anything. I went to my internist who thought I was having stress and allergies. She put me on Lexapro and Ativan and Nasonex. Needless to say, the diziness never went away but I ended up having a multitude or problems with the meds and quit…then withdrawal from them which she said wasn’t possible because of my low dose. On to ENT, Neurologist and countless tests, which all showed nothing excpet a PFO (hole in heart) which my neurologist said is causing my “Migraines”. I could only think to myself that I don’t have migraines . Never had headaches in my life?? Now I am worried about what it could be…worried about my heart (3 cardiologists said they didn’t think my problems were stemming from the pfo, which is a fairly common occurance in 20% of the population)> Neuro thinks I should have surgery to close it…more worry…more anxiety. Im experiencing anxiety for the first time in my life and think no doctor can figure me out. Insomnia has been a problem and terribly emotional as I know something is wrong but every tests says i’m ok. I stumbled onto t his website and for the first time I actually think this might be what I’m going through??? I called Dr. Hain’s office to make a phone appt and they cant get me in till late July, but I am hopeful that I might have found an answer.
Could you tell me what your symptoms were in the beginning? For me, I just had the dizzy feeling when looking around…I get a sore orbital/forhead by every afternoon, my vision seems off but went to 3 opthomologists who say nothing is wrong with my vision or eye health…but I see things differently, but in ways I can hardly explain.
A little “off”…blink more to adjust to seeing…sometimes looking around makes me a little nauseaus…I frequently feel like I just got off of a ride that made me feel queezy…I worry people think I’m crazy and making stuff up! But not the case! I just know my body and know when something is wrong. This had been 3 months now and it wears you down…any advice?? Is anyone else out there experiencing these things? And how do you get a true MAV diagnoses? Thank you very much in advance…


You have come to the right place! This is a great site with many very knowlegeable people. You symptoms sound very similar to many here, including me. From my undersatnding the PFO likely is a long shot. I can only speak to my diagnosis…the diagnosis is really a process of elimination. I went through the ENT tests, MRIs, cardio tests and ended up with this diagnosis. I have tried three different meds thus far and no success, so it does make me wonder if the diagnosis is correct but then I read some people on here where it takes many different med trials.

I am trying Topamax next…

Good luck and enjoy this forums and the people on it!