Google Books – migraine-induced vestibulopathy

Hi All,

This is missing a page but the intro sounds very accurate. Note what the opening line says:

“Migraine is the most common central cause of episodic vertigo and a common cause of all episodic vestibular events.”

While they don’t say continuous vertigo, one could argue that each event leaves us in a post-dizzy, decompensated state … never quite getting there and we are hit all over again. Still others live with permanent aura.

I like how he discusses the dispute over classification of migraine and suggests the current definition is not accurate – which we all know to be true.

books.google.com/books?id=LIy2mm … go&f=false

Lisa – this looks like a book that every doctor should have on the shelf. I’d grab a copy myself if it weren’t 80 bucks. Given the accuracy of the MAV article, no doubt the rest of the book would be very good.

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Scott 8)

Thanks for the post Scott. Great link. I hope the medical profession will become more aware of the extent of symptoms that migraine can cause and not just focus on Headache. It amazes me (and disappoints me) when hardly any of my colleauges, even some of the ENT’s and certainly GP’s have no idea what MAV is or that migraine can present in other ways than headache.

Lisa

Thanks, Scott. very interesting. I wonder what this author would say about the chronic dizziness that we suffer. I tried to find his email, but was unsuccessful. I will try again.

— Begin quote from “MAVNY”

Thanks for the post Scott. Great link. I hope the medical profession will become more aware of the extent of symptoms that migraine can cause and not just focus on Headache. It amazes me (and disappoints me) when hardly any of my colleauges, even some of the ENT’s and certainly GP’s have no idea what MAV is or that migraine can present in other ways than headache.

Lisa

— End quote

Lisa,

Why do you think it is that many physicians have no idea what this is and only view migraines as headaches.? I was truly amazed any time I mention it to my other doctors they give me a funny look.

— Begin quote from ____

I tried to find his email, but was unsuccessful. I will try again.

— End quote

I found his clinic website, including an email address. Am I allowed to post that?

Brenda

Brenda,

I don’t see why not if it is on the web. I also found his clinic, but not his personal email. Was it his own email or the clinic’s email?

Hi Lisa, it was the clinic’s email. Do you think they would give out his personal one? Probably not. I wonder if they would though if they knew the circumstances of us wanting to know ie we’re extremely interested in his stance on migraine and vertigo. Although I guess he’s snowed under with such requests. What do you think?

Brenda

I doubt they will give it, but i guess anything is worth a shot. If you do get it, we should decide who will write the email, as I don’t think we should all bombard him. let me know if you decide to ask them

— Begin quote from “Timeless”

— Begin quote from “MAVNY”

Thanks for the post Scott. Great link. I hope the medical profession will become more aware of the extent of symptoms that migraine can cause and not just focus on Headache. It amazes me (and disappoints me) when hardly any of my colleauges, even some of the ENT’s and certainly GP’s have no idea what MAV is or that migraine can present in other ways than headache.

Lisa

— End quote

Lisa,

Why do you think it is that many physicians have no idea what this is and only view migraines as headaches.? I was truly amazed any time I mention it to my other doctors they give me a funny look.

— End quote

Hi Timeless,
This is a very simple question. They don’t teach us this at all in medical school in the US. And they also do not teach us this in residency. I guess docs can’t know everything and as a group MAV is still pretty rare. I did 4 months of training specifically in neurology in residency and this disorder was never mentioned, nor did I ever encounter a patient with MAV. Migraines, yes. I never really heard of this before I was struck with dizziness and began doing extensive research about it. There isn’t even much research out there as we know on MAV. In fact, MAV is not even considered a recognized diagnosis by the AMA.

Lisa

Hi Lisa,
What specifically are you looking for from this doctor? If you could talk to him, what questions would you ask?
Lisa

Lisa,

That is a very good question. I suppose I am always looking for answers for a disorder that unfortunately has no standard answers. Curiosity inclines me to want to know his drug of choice, as well as his experience with MAV pts.

— Begin quote from ____

I doubt they will give it, but i guess anything is worth a shot. If you do get it, we should decide who will write the email, as I don’t think we should all bombard him. let me know if you decide to ask them

— End quote

Hi Lisa, no I wasn’t thinking of asking myself but thought that someone might feel up to doing so. Good idea to only write one email I think too.

Brenda

Brenda,

Sounds good. Sometimes I have my husband write emails because he is a physician, but I’m not quite sure about how to track down the email address. Ironically, I married a neurosurgeon who of course never heard of MAV before. I guess I’m just always searching for answers, and it’s interesting to see various docs take on things, as there are so few doctors that understand this dx. All the best to you. Will let you know if I discover the email, and you do the same.

Lisa

Will do Lisa. I’m also one of those insatiably curious people who just have to have answers. :smiley:

Brenda

— Begin quote from “MAVLisa”

Lisa,

That is a very good question. I suppose I am always looking for answers for a disorder that unfortunately has no standard answers. Curiosity inclines me to want to know his drug of choice, as well as his experience with MAV pts.

— End quote

Hey Lisa,
In the paper, it states that drugs used for this condition are amitryptiline, depakote, the beta blockers, and topamax. I think it may be safe to assume he uses one of these depending on the patient’s other symptoms (ie, depression or trouble sleeping, mood disorders, blood pressure, weight status, patient preference). I suspect, this paper is not completely up-to-date, so maybe he uses the newer drugs instead. I too am always looking for every answer I can find about this, but I am coming to terms that it’s just a matter of trusting your doc, trialing the meds, and trying to be patient. So much easier said than done, especially for those of us that suffer 24/7.

Lisa

Lisa,

Yes, I did see where he listed his drugs of choice, and I’m sure it overlaps with the drugs he uses for our condition. I guess, seeking out answers from different doctors is my way of coping with an illness that I feel like I have little control over. Of course, this isn’t always productive as it leads to further confusion because of the differing opinions from doctors, but just my sad way of coping. I think, though, that finding one doctor whom you can trust is the best way to combat this illness. I’m so glad that you were able to do that.

Lisa

Hi Lisa,
Believe me, I spend most of my time searching for answers too and I feel the same way. For me, Dr. Newman was the doctor who finally diagnosed me and offered me something other than the many (and I mean many) docs either shrugging their shoulders or saying with time I will get better. I also have my vestibular therapist who is extremely knowledgable and speaks very highly of Dr. Newman and keeps encouraging me that with the right med I will get better. He has sent numerous patients to Newman with excellent results. I have yet to see much improvement and I will be sure to sing his praises if he gets me up and running. But, it is not Dr. Newman… it is a matter of finding a doc that is very familiar with MAV and taking it step by step with him or her. I wish there were a magic pill or magic doc, but I don’t think it is anything more than that:-(
I know we all on some level know this, but as we suffer day in and day out it is hard to stop searching…
Lisa

Lisa,

That is great that your vestibular therapist is encouraging. It is one thing when our family/friends tell us that we will get better, but another when a vestibular therapist (who has knowledge and has seen many get better) gives you that reassurance. I’m sure your therapist knows what he is talking about from experience. Wish I had that support weekly. It’s just not the same coming from loved ones.

All the best,
Lisa

I agree Lisa, it is helpful to have a weekly “session” with my vestib. therapist who is optimistic and is not a loved one. But, his support and encouragement is not specific to me… it can certainly be generalized to all of us as we are all MAV’rs. I still have my daily breakdowns despite all the encouragement from different sources, but we gotta just do our best to stay strong, keep trying our hardest to remain hopeful about the future…
lisa