Hello MAV Friends,
It’s been a while and just wanted to give an update and some hope.
My symptoms started in Nov 2011 and I was diagnosed with MAV after much testing (including the dreaded VNG/ENG testing) in Aug 2012.
I first started with Verapamil and Diamox but discontinued them because of side-effects. This is before I really knew what side-effects were.
At the same time I stopped the Verapamil and Diamox I started Topamax. In retrospect a BIG mistake. Should have come off of Verapamil and Diamox, kinda detox a little and then start the Topamax.
I started the Topamax in the beginning of Oct 2012 and had horrible side-effects even as I was titrating up to 100mg. The side-effects did ease up enough for me to try and up my dosage again in Dec. I chose a rather aggressive increase because of the timing and the support that was available to me because I knew the side-effects would be horrible…they were. I got up to 200mg but by Jan 2013 I was coming back off. During my Topmax trail, I did the “Heal Your Headache” diet which was easy because I had zero appetite. I can say I gave Topamax a good try, but it just was not the med for me.
In late Feb I finally bit the bullet and had a Lumbar Puncture…of course I had a leak and had to get a blood patch done. My pressure was 20. Top of normal on some charts and high on others.
After recovering from the LP I decided to continue my respite from meds and slowly started getting better. In my opinion it was the combination of having decreased cranial pressure for 5 days, plus all the weight I lost on Topamax (40 lbs but most of it was weight I put on being so sedentary with MAV symptoms). My Doc thinks it was the Topamax, but I don’t think either one of us really knows why I got better.
It wasn’t an instantaneous-wake-up-one-morning and feel better kinda thing, it was slow, over a several weeks were I noticed that things were getting easier, I was feeling steadier, and just generally better and better.
The only thing I was taking for MAV was Magnesium and I’m not a real supplement/vitamin taking person. I still take it everyday and would highly recommend it.
Sooo, where am I today. After being out of work because of MAV, loosing a love because of MAV, realizing what family really means because of MAV, I AM BETTER!!!
I was able to do some really cool projects for work (theatre stuff), I was able to be on stage again (in the leading role), I’m able to go out and enjoy all the things I will never take for granted again. I can walk, work, go to the grocery store, think, go out to dinner, go see shows and the ballet, go to the movies, plan for the future, enjoy a glass of wine every now and then, swim in the ocean, sing!, etc. etc.
I’m not 100%, I’d say I’m at about 85%, but I was at 10%. A few things are still a little difficult. Showers aren’t always great, ladders are still a no,no, but I am so much better. I’m working with my Dr to get to 100% but am sooooo grateful to be where I am today. I’ve been getting more ocular migraines of late, but have been eating pretty much whatever I want and they usually happen after I haven’t been taking care of myself.
So if you’ve read this far (sorry this is long), PLEASE don’t give up hope. There is hope. My thoughts are with you all. I’m so very grateful for this forum, it literally saved my life.