do u have fibromyalgia? do you take anyting for that? i have it too.
Must pipe in as I have been doing some research. MAV or vestibular migraine is the most common cause of recurrent vertigo…it was once thought to be BPPV.
MAV It is not a vestibular disorder, but a brain disorder that causes vestibular symptoms. LOTS of diagnoses are ones of exclusion…the main consideration is ruling out things that are BAD. When we go into doctors’ offices and touch our finger to our nose, stand with our eyes shut, or walk heel to toe down the hall we are being evaluated for lots of different things. Labs can be drawn, but they don’t identify the cause of dizziness 99% of the time…plus there are tons of false positives which can cause patients more anxiety.
Doing brain imaging is not recommended on initial exam unless symptoms suggest it (these would be abnormal neurological findings). Fortunately for us we have migraine (not life threatening, generally treatable)… but unfortunately for us our symptoms sometimes persist despite treatment. Past and present history is huge and can point a provider in many directions. I think getting MAV to be more recognized is our first goal…then when other differentials are ruled out on initial exam, providers can consider MAV and suggest dietary and lifestyle modifications, and prescribe migraine medications. It doesn’t hurt to trial this; if it works then we can be somewhat confident in our diagnosis. If these don’t work then it’s back to the “drawing board” and we can trial different meds, or re-evaluate the diagnosis altogether.
Definitely understand what you’re saying. I am not denying that some of my symptoms are Mav symptoms. But, IMO, Mav is a name given for a constellation of symptoms. I believe when someone goes from infrequent migraines and fully functioning to crippling 24/7 dizziness and other neuro symptoms, etc, there is something beyond genetics going on. If a med though works and gets someone to living a great life without relapses then I guess discovering the cause isn’t all that necessary in some cases.
Jenh – excellent overview and reality check. Thanks for that.
Scott
— Begin quote from “MAVLisa”
I believe when someone goes from infrequent migraines and fully functioning to crippling 24/7 dizziness and other neuro symptoms, etc, there is something beyond genetics going on. If a med though works and gets someone to living a great life without relapses then I guess discovering the cause isn’t all that necessary in some cases.
— End quote
I have to disagree with that Lisa or perhaps it’s the way you’re expressing it that I’m not getting. First, if we have migraine, it’s genetic. I think we agree there and there is no cure for this – not yet. So we manage it to reduce symptoms to near zero. There are a number of migraine variants of which vestibular migraine is one. Most of us fall into that camp. So why does one person have sporadic symptoms and why does another have chronic symptoms? Just like there are different degrees of MS or epilepsy or even autism the same can apply to migraine. I don’t see what the difference is. It just is what it is and some have it worse than others at a baseline level. That’s the first part.
Second, for some of us a “big bang” event occurs which can propel us into chronic migraine land and even precipitate full blown MAV from an otherwise negligible migraine state. That appears to be what happened to me with getting whacked with vestibular neuritis in 2003. Others get BPPV. Some hit there head on the ground. Others get labyrinthitis or Bell’s Palsy and BOOM, off it goes because we are genetically predisposed. People who don’t have a migraine brain fully recover and move on (the words of Prof Halmagyi here in Sydney).
Third, there are other things we know that can trigger the chronic state and for some it can therefore be reversed. For example, if a migraineur goes nuts on painkillers like I did recently, rebound develops and as Prof Nick Silver will tell you, it pushes people into chronic country. People who do not avoid certain triggers can be chronically sick and feel better when they remove the offender – such as caffeine. Caffeine and other such triggers can render a migraine medication useless. If they get anxious, it goes crazy again until the person is relaxed again.
Fourth, there are the co-morbidities that we have to weed out if there is one. So for you it looks like Lyme disease has been crashing the party. It looks like it was your “big bang” and continues to keep you in this dreadful chronic state. I’m not clear though if your 24/7 dizziness is all migraine-based or if some of it is Lyme-based – or both. The thing is, you obvioulsy have to kill this Lyme problem before you can make any head way on the migraine component. There’s also physical problems that can produce chronicity of symptoms as I’ve recently discovered. Trigger points in the neck, yet another thing that can make life hell for a migraineur.
I guess my point is that at the centre of all of this storm for most here, it is migraine being aggravated or triggered in some way or it’s just a really bad case for no particular reason at all. There’s just all sorts of junk that can occur around that which makes it very difficult to see the wood for the trees and why we all end up being so easily confused. Who wouldn’t?
There must be a diagram we could draw about all of this above! I picture it like this: A circle at the centre with migraine written inside. On the outside are three arrows pointing towards it 120 degrees apart. One arrow is labelled physical issues like trigger points or TMJ or BPPV. Another arrow has co-morbid diseases/ viruses/ bacterial infections on it, such as Lyme, VN, labs, and hundreds of others that could potentially push the migraine button. And the last arrow is labelled with daily triggers such as lack of sleep, anxiety, foods, odours, visual stimulants, light etc. All of these cause the migraine circle to get larger or when removed, smaller. Perhaps we all have a genetically programmed size of that circle to start with.
Does that make sense?
S
So if I have chronic MAV and also Lyme, if I treat Lyme successfully will I still have to treat MAV or will MAV also be cured?