Newly Diagnosed MAV and question

Greetings fellow travelers in purgatory,

Yesterday was my first office visit to the Hain/Cherchi practice. After three months following my first episode, I now have an upgraded diagnosis from BPPV to MAV. I was off work for 6 weeks, returned for 5, and now I’m off for another possible 16 weeks.

So, what isn’t working is time. I’m not getting better as was expected. Currently I’m taking Calan, Medril for low end headaches, Frova for the monster migraines, and a touch of vallium when the spinning is overwhelming and I can only sleep it off. Generally I was impressed with Cherchi’s conservative approach because I’m a staunch anti-drug person. I probably have the typical symptoms that everyone else does, dizziness low grade constantly, facial numbness, tintinitis, headaches, swirling vertigo with left to right eye movement, nausea, mental fog, and memory gaps.

However, Cherchi scratched his said when I told him that sometimes I lose all sensation in my body, throughout, for a few seconds and then it returns. Does anyone else have this symptom, or heard of this?

Any words of advice or encouragement back to me would be greatly appreciated. I’m at the height of my career, happy in all things I’m doing and now fear that I won’t be able to return to the job I love or take care of the family that I am a rock for. Feeling pretty down right now I am, in Yoda speak.

Cheers – oh that’s right I can’t drink and will never be able to again for the rest of my life (another big bummer),

Holly :mrgreen:

Hi Holly,

I’m sorry to hear about your migraine troubles. It sounds as if you have the whole smorgasbord of migraine symptoms from the commonly recognized migraine headache to the less common and bizarre symptoms many of us who visit here share. I recommend the books Heal Your Headache and The Migraine Brain.

Also, while I don’t have this symptom myself, your description of losing sensation in your body sounds similar to experiences I’ve read regarding Hemiplegic Migraine on the forum MyMigraineConnection.com: http://forums.healthcentral.com/discussion/migraine/forums?ic=4026 If you follow the link and scroll down you’ll find a thread specific to this type of migraine.

The key to managing this condition is identifying and avoiding your triggers. Determine your optimal sleep schedule and follow it faithfully. Follow the migraine diet for a while to identify any food triggers. Definitely avoid caffeine at least until you know whether you can handle it or not. I had to give it up to get my vertigo under control, but I’ve been able to add it back in moderation now that I’m managing my condition.

Take care of yourself, don’t wallow in this condition - it will suck you in if you let it, and keep searching until you find your own personal treatment plan that works for you.

Best wishes,

Marci :slight_smile:

Hi HOlly,
Wow, it sounds like you have been hit hard by this. I am so sorry. Im sure all of us are still scratching our heads and wondering how the heck this happened?? Every time someon new pops up on the board I’m still surprised that
so many people are afflicted when I have NEVER EVEN HEARD of any of this in my whole life until it hit me. So strange!!

THe treatment plans you have mentioned I am not familiar with. I was, (big WAS) very anti-drug as well, but after 6-8 months of alternative treatments that didn’t really pan out, I caved. At least I have my life back, even though
it doesn’t look totally the same. I am able to do and go, where I was mostly housebound for a long time. I still have a lot of energy on trying to get back to normal.

Please keep us posted on your progress…hang in there!!

Kelley