Doctors need serious education regarding MAV

Had a near fainting episode yesterday and had to be wheeled down to the Emergency room. I figured it was just something to do with my MAV. So I told the ER dr. i have Migraine Associated Dizziness… he says so do you have a headache now?? I said no and got frustrated and said no more to him. That was the 2nd person at the hospital to ask me that question. Nobody understands this dreadful condition. It is so freaking annoying. They hear migraine and automatically think headache. I wish there was a way to get people educated about MAV. Even my husband doesn’t understand what goes on with this crap on a day to day basis. Don’t you wish you could have someone feel what we feel for just one day… no longer… because I wouldn’t wish this upon anyone. Thanks for the venting session :lol:
hope everyone is having a symptom free day :smiley:

Hi Kathy!
So sorry to hear about your Er visit :frowning:

Have a great day :slight_smile:


Yes!! Kathy that just makes me wanna scream and claw my face!!! :evil:

When he asked if you were having a headache, you should have said A MIGRAINE ISN’T A HEADACHE!! IT’S AN EVENT!!!

I say that sometimes. Not sure that anyone listens but it feels good :stuck_out_tongue:


Hi BB… That must be so frustrating when the dr’s told you your headaches had no relavence… are they crazy!! Wish the dr’s could take our place and then they wouldn’t be saying get on with life. uggg… Maybe some day dr’s will be educated on MAV and nobody will be going thru the crap we are :smiley: I’m lucky I have a good Dr and he is lots of knowledge of MAV but when you have to go to the ER they don’t know what they are doing. I’m with you wish we could get our money back when we don’t get good service… haha… imagine that.

Hi Kathleen… I was so frustrated when they kept asking me if I had a headache when I said I had MAV…duhhhh guess they don’t know the difference. I’ll have to remember that one… it’s an event… good one…

hope everyone is having a great weekend… symptom free :smiley:

Guys, just a thought on these stupid, thoughtless comments we have to deal with DAILY!! I read on here somewhere . If people ask are you feeling better (!) or have you got a headache? Smeone on the forum says ‘I have a neurological condition’ that shuts people up pretty quickly.
I went out with some girlfriends on Friday night for dinner. After picking the menu apart and deciding that plantin (sp) is part of the banana family so best avoided & that yes butter was ok but other dairy isn’t. (You could feel the eyes rolling!) I just went home early :frowning: I’d had a busy day with my babies and was coming down from some hideous lights in a cafe. The restaurant was dark & load I couldn’t hear what they were saying properly, I couldn’t have a drink & I couldn’t have dessert. One friend had promised to walk home with me - I wanted to take my car but she insisted that we walked so when it came to 10pm and I wanted to leave of course she didn’t! So home I went , my eyes were closing as I know take my nori at 5pm as I have to be up early in the mornings with my babies. I found it all quite depressing tbh as you say if some people could walk a day in our shoes!

Agreed here they need teaching especially as dizziness is the third most common reason for people to visit their doctor. I also wish people in my life could have this for one day too would soon change their tune.

Anna how is nori working out for you and what dose? sorry if Ive asked that an for thread hogging.

I think you have to assume most doctors are not going to diagnose this thing correctly. What you have to do is recognize that you might be suffering from migraine symptoms and get yourself to a migraine specialist for analysis. Even if that person isn’t a MAV expert, any doctor that deals in migraines is going to be 1000 times more useful in dealing with this problem.

This is a weird and difficult problem to diagnose. If my eye doctor hadn’t been on the ball and referred me to a migraine doc who knows how long I would have suffered with it. Luckily I had a great eye doc who realized that the bizarre visual symptoms I was describing to him sounded a lot like migraine issues. But a lot of it came from me paying super close attention to what was going on and noticing some very small but very important episodic changes in my vision that were big clues that I was having silent migraines. In the end, with conditions like this, the patient is always going to be his/her own best advocate, because there are no tests that can prove you have MAV, nor are there any tests to prove that treatment is working.

Hey Blondie,

I’m up to 50mg - DR S told me to stick with that for the next few months unless I have a meltdown then I need to crank it up to 60mg. The fog is slowly lifting but I’m still not cured by any means - I’ve got loads of tingling going on too x