So glad that the Baloh post has helped so much and you’re liking the forum. One of my main goals (and Adam’s) has been to have a place where people with this migraine nightmare can come for support and have access to the most accurate science-based information there is on all of this. There’s just a staggering amount of misinformation and misdiagnoses out there. And as you can see in the Success Stories, people definitely get well again – that is, they are able to manage symptoms to the point of them not being a thorn in their sides every waking hour.
Keep in touch and let us know how the appt goes. Good plan to bring some husband ammunition! :lol: Perhaps the information from Baloh will convince them to give you that referral too.
Just wondering what Baloh means by ‘vigorous exercise’ in his llifestyle changes. Does he mean do it or avoid it!? I’ve just got back from the gym so it’s on my mind!
He means to incorporate exercise that gets your heart rate up for about 30 minutes a day. Vigourous might be too much (you don’t have to run like an Olympic athlete) but definitely moderate where your pulse is up and you’re not just shuffling down the street. Walking 30 minutes a day at a brisk pace is all you need to do. This is what we prescribe in our diabetes prevention program too.
Dear Scott,
Thank you sooo much for posting Baloh’s comments, as well as the other doctor’s comments. I saw Baloh last December, after lots of running around and many tests to diagnose my “condition”, which was suspected to be Meniere’s. I also saw Dr. Dearbery at House in LA and she told me I didn’t have Meniere’s (last September), then Baloh confirmed it and said t was MAV. It took some convincing since I never had migraine headaches, but when I began to have constant dizziness and severe motion sensitivity (I joke that if I was blind and deaf I would feel just fine!!) then I started to be convinced. I’m still that way and glad I found this forum. I used to read the Meniere’s forum and didn’t know about this one!
I was impressed with Dr. Baloh who seems to be a very down to earth and knowledgeable doctor. He told me he follows hundreds of famlies with MAV! I’m now on citalopram, which he advised since nortryptiline made me feel weird. My current neurologist accepts Baloh’s consultation, so he is onboard with his recommendations. However my case so far is pretty intractable, not responding so far to the drug or anything else (I’ve tried lots of things, to no avail- a long story- similar to other MAVers).
It helps me to change my thinking from expecting a cure to focusing on mitigation.
Thanks to everyone for their posts and sharing,
Patricia
Scott, thanks very much for these great notes! After 16 years with constant rocking on a boat, I read about MAV on the Internet and saw Baloh in Feb. 2010. He gave me a positive diagnosis of MAV, but wouldn’t treat me. Is this normal practice for him? I live in the Los Angeles area and was wondering if you knew of a good neurologist around here that treats MAV. EDIT: Okay, Scott, I see you live in Australia, ha ha, so dumb question by me.
Don’t know who you would see in LA. Bizarre that Baloh doesn’t treat anyone but just does the diagnosis. I know his current favourite med is Celexa so maybe you can give that a go at about 10 mg.
Ditto. I’ve said this so many times. One specialist migraine neurologist told me that that meant mine were not anything to do with hormones and inferred I was unusual however the presence of others on this very forum together with other medical stuff I’ve read on the internet had already convinced me that is not the case.
I’ve very recently been told that irrespective of whether it did not kick in until menopause it should still fade away with advancing age because it just does.
Same here, my problems started with menopause, first a few auras (without headache) over a number of years, then more auras, then a full-blown VM attack.
I am not sure about VM/MAV being a genetic disease. No-one in my family ever suffered from migraines and I never suffered from them either until menopause.
I’ve seen other references in medical papers to similar effect. Apparently migraine, for anybody, trials off with age. The older one gets the less likely they are.
Can someone explain this symptom a little more? I face a problem focusing, and I think it’s related to my MAV. But I want to know if anyone else has the same problem.
To me it feels as if my eyes cannot be still, as if they are always moving. If I look at my eyes in the mirror, I can’t see anything unusual, but it still feels like they are moving. I found that doing jigsaw puzzles helps with this, probably because the puzzle pieces force the eyes to focus.
I find it hard to focus come to think of it. Like focusing on one small thing. Like my eyes are not in sync. Like a convergence issue. Having said that, my eyes have been my worst symptom. By far! In a variety of different ways.
”Difficulty in eye focusing is a common migraine symptom as is variable amounts of dizziness throughout the day.”
Dr Baloh’s mentions this being common. Another neurologist told me very recently that the condition affects ‘the eyes’. If you use the Search facility you will find many other references. I’ve experienced it myself too. Difficulty in focusing. Difficulty in keeping an object sharp in your line of site. Bit Blurry maybe? Sometimes it difficult for MAVers to understand the difference between true vision difficulties and some other MAV issues which have an adverse effect on vision but actually originate in the brain. A visual aura would be an example of the latter as would be the effect of external (objective) rotary vertigo. What you have to remember is that the eyes gather information but the brain dictates what you actually see. If the brain is struggling with overload disruption to vision can occur.
Obviously Dr Baloh is not here to ask but I’d suspect he means reduced ability to maintain a crisp sharp image.
I’ve long thought specialists should be more truthful. Maybe some are but I’ve found most avoid any reference of prognosis entirely. It’s unfortunate the drugs used are referred to as ‘preventatives’ because that is misleading. Perhaps less use of the term would give sufferers a more realist expectation of what the future, mostly particularly for the intractable minority, might hold.
May improve once the VM settled down. As long as the eye doctor says your eyes are fine I’m sure they are. Anxiety also can affect the eyes. I also find some common painkillers (Paracetamol and Ibrufen) can do the same
