When I was up in the mountains last weekend I was told that a cousin of some friends (a girl I have met before a few times over the years) suffers with vertigo and has for years. She always kept it to herself but told these friends of mine recently. So I called her up and left a message and just heard back from her.
So get this: she’s had this going on for YEARS and the best dx she got was that her body has a problem dealing with adrenalin. ADRENALIN. What a joke. So I ran through a pile of questions on the phone with her and listened to her story. Tell me what you would call this:
Had a bout of cluster headaches when she hit puberty about 25 years ago
Had a hugely stressful 9 months years ago and that’s when the dizziness started
She gets hugely dizzy with her period
Sudden bursts of exercise leaves her feeling dizzy
Lately she’s been eating loads of chocolate and cheese; her dizziness has been continuous she just realised since eating like this
If she drinks alcohol, she is always dizzy the next day
She can start the day feeling happy, get a dizzy spell for a few hours and she’s immediately depressed afterwards from it.
Now if that’s not textbook MAV I don’t know what is. When I told her the whole deal, she nearly screamed with joy over the phone – it made immediate sense to her and she finally knew what it was after years of misery. So I told her to remove the triggers for a while and see if it’s enough to end it all otherwise she can take a med or check out the migraine program (best to wait and see my results first perhaps).
So all of that made me feel good. Saved someone from what a doctor told her would be a lifetime of dizziness.
I wonder how many are out there walking around with this and without a clue?
I think there must be thousands of people who suffer from this, from those who have an odd dizzy spell every now and again to people like us on this board who suffer or have suffered every day.
Given that we have to fight so hard to get a diagnosis I worry about whether a lot of people accept what the first Neurologist they see diagnoses them with (mine thought I had a stomach virus!?) or haven’t been to see anyone at all because “it is just one of those things” they live with.
I have a friend who has been having dizzy spells for years and she was told by a neurologist that she has “nerve damage” and there is nothing they can do. I always think about suggesting to her that it may be MAV, but I don’t want to seem like I am completely obsessed with it and attirbuting every complaint to it!
“”“”“”"I have a friend who has been having dizzy spells for years and she was told by a neurologist that she has “nerve damage” and there is nothing they can do. I always think about suggesting to her that it may be MAV, but I don’t want to seem like I am completely obsessed with it and attirbuting every complaint to it!
Becky"“”“”“”“”
Becky, i.m wondering if your friend might have my situation. I have mav mixed with meniere’s. the menieres is what’s killing off my inner ear nerves. I have all the symptoms of mav and a few that pin point menieres.
Just thought I would throw that out here for thought.
Lori
You did a great thing. Wouldn’t it be great if she were one of the lucky ones who got off with a good diet alone?
She’s in good hands with you as a friend
Becky, i understand completely. You don’t want to become one of those Lyme disease people who sees nothing but your own illness around you. and since she knows you, you’d think she would have thought of it, right?
My entire family has dizziness, migraines, panic. Of course I think they’re all MAVers-on-the-brink. and I’ve even said as much to Megan’s mother (the one who is now cured). But she blows everything off (it’s her neurosis, which is a story in itself - she had to learn how to deny in order to stay sane). They’ll wait until they all crash. and they still won’t learn from me, because they never listen to me anyway. Family! Brian, your family may take the cake, but only because you guys have never met mine!
