I think we should clarify some things:
— Begin quote from “MAVLisa”
I truly think that the fact that a medication works doesn’t mean that one has MAV without an underlying reason. as I learn more, it seems to be that MAV is a constellation of certain symptoms and many with those symptoms do find relief in migraine meds. but, that doesn’t rule out that there is a CAUSE for having MAV, especially when it’s chronic dizziness. but, that is true. there are a percentage that don’t respond to drugs. as you know I’ve tried so many without success
— End quote
The underlying cause of a true case of migraine associated vertigo (MAV) or vestibular migraine (VM) as it’s also called – is, as the name suggests, migraine disease. Migraine is a genetic disease, one that a migraineur has inherited, a set of genes that for whatever reasons become activated at some point in a person’s life. MAV or VM is therefore a migraine variant. There is a spectrum of sufferers who fall into this category from sporadic to chronic vertigo type symptoms. The disease changes over time. It may get worse or better. It’s unpredictable that way.
Lisa, I think what you are trying to say and I think it’s important to get the semantics correct, is that you have a dx of Lyme disease and you also are a migraineur. The latter goes back before the vertigo began. It appears that if you in fact do have Lyme disease, it may have been the “big bang” for you that pushed you into the chronic state. Now, whether your dizziness is from the Lyme disease or migraine or both I really don’t know – just like it’s difficult to pull Meniere’s and MAV apart. However, Meniere’s and migraine can coexist in the same person (unfortunately) and obviously so could Lyme and migraine disease.
I’m not totally clear on the prevalence of Lyme disease because it depends on ticks being present but I have seen from a number of sources that CSF leak, for example, affects about 0.005% of the population (I’m sure Lyme is much, much higher than this in NY). Now, while Inafog appears to have clearly been a CSF leak sufferer (total recovery I understand after the patches), it should be put into context (which I think is what frustrates MissMom). And that’s why the statistics matter on this stuff. The analogy that always comes to my mind is this: if a person has a running nose and sore throat showing all the signs of a garden variety cold, then it’s highly probable it’s a cold and not some rare African disease that a small fraction of the population gets which mimics a cold. Migraine is obviously not as clear cut as a common cold and is more often a dx of exclusion but a lot of the time it is pretty clear when the genetic history is there, there is headache, light sensitivity etc. For the majority of people with unexplained vertigo (after ruling out other central and peripheral causes) it makes sense to make migraine the first port of call.
Lisa, you live in an endemic area for Lyme disease, have been through a huge range of migraine meds and have basically turned over every migraine stone there is and so it makes perfect sense for you to go this route now. I certainly hope this next treatment finally makes a dent in this for you and puts and end to it.