The future of migraine [wordy]

Though I’m kind of just parroting some of what others have said already, I think we will eventually find a few “common denominators” of the entire “migraine spectrum.” That is, I suspect we’ll discover that certain mechanisms underlie / characterize ALL forms and manifestations of migraine disorders.

But beyond that, I think there has to be a fundamental shift in how medicine – and doctors – tries to understand migraine and treat it. It used to be that “migraine” was defined as “really bad headache,” right? (And what we now call “MAV” used to be “floating-woman syndrome,” as Rauch says.) But now we better understand migraine as, quote, “A global disturbance of sensory signal processing.”

Most doctors still think of migraine, however, as a simple mechanism with a simple symptom: headache. That is, they figure “migraine” means “(head) pain,” nothing more, nothing less. Until doctors get beyond that antiquated mindset, they will continue to do little more than throw painkillers at it; those patients who present with dizziness or other symptoms will be handed off to an ENT (who will invariably misdiagnose, because they’ve basically been taught that dizziness equals inner-ear problem).

Anyway, when I spoke of a “fundamental shift,” I also had a second meaning. The first part was that doctors need to understand the full scope of migraine. Secondly, though, migraine OF ANY FORM ought to be treated on a patient-by-patient basis. Clearly there is no single treatment approach that works for everyone [or if there is, we’re far from finding it] – otherwise, there’d be a drug that works for EVERY MAV’er.

*[Edit: Consider Topamax. It’s an anticonvulsant, it enhances GABA, and it inhibits glutamate receptors, sodium channels, calcium channels and carbonic anhydrase (weakly). And what happens with most people? Their brain goes completely crackers! This drug should show us what happens when there are so many mechanisms of action that not only do we have NO CLUE what’s doing what, but some of those effects are at best unneeded, and at worst counterproductive, thus making the patient worse rather than better.[/i]

No, medicine ought to be working on somehow trying to determine what the entire migraine spectrum encompasses – the variables. What’s the person’s age, gender, family history of migraine, etc.? How long have they suffered migraine? Constant or episodic? True vertigo or some other form of dizziness (like lightheadedness)? Actual imbalance or mere feeling of it? What are the patient’s symptoms? (e.g., visual distortions? insomnia? rocking sensation? imbalance? light intolerance? visual hyperstimulation?)

There are a million and one such considerations, and given all the disagreement that exists about what causes migraine and what treats it (especially when it’s MAV), I think we have to deduce that each person’s migraine (…brain) is different because its mechanisms are greatly varied (except, as I said earlier, for a few mechanisms that I suspect are common to all forms of migraine).

Now if only we could start to somehow “map out” or discern whether certain symptoms correspond to certain mechanisms. Only then, I think, will we see migraine treatment move beyond what it is now – a hit-or-miss game of trying to nail the right drug (or combination) until one finally calms the storm.

… Sorry, guess I’m wordy today.*

Hey George,

Very well written and I completely agree. It seems to me the whole migraine thing is treated on a very one dimensional, barely-scratching-the-surface sort of way. Unfortunately it is a neurological disorder AND it is a brain problem. The latter makes it very difficult to pin down due to the complexity. Migraine, or at least MAV, is sort of like a finger print. We all have the same fingers but no one has the same finger print as in no one shares (in my experience) the exact same symptom set in its presentation. No doubt that’s because if the migraine process (let’s say it is just a Ca+ channel problem) extends just millimetres further into a particular part of the brain it then produces a bunch of additional and strange symptoms. Sometimes I think of the brain like a map of Ausralia or North America and migraine like flood waters. You just don’t know where the water will go and to what extent the flood waters rise.

Hope you’ve been feeling better lately.

Scott :slight_smile:

I know, why dont the specialists look at the person, say with bad insomnia, blood sugar problems etc and pick the drug that would suit them best. I was seeing my neurologist for 10 years and he just picked out another pill to try at random. They see patients every day, a good doctor would try and work out which drug might suit which person better instead of us just trialling another drug and all its side effects for months at a time. Sometimes I wonder what they are getting paid for :evil:


Hi Christine,
Yes, that absolutely sounds like bad doctoring. Now that I have been on both sides of the desk, I can honestly say that as patients we have to be our own advocates… question and push our docs. Point out and then point out again if we think they are not making the best decisions for us. And if you are not comfortable for any reason with your doc, see another one.

What med did he/she put you on?

Hope you feel better soon…

Hi Lisa,

Meds tried, propranolol, Inderal, tylenol, atenolol, epilem, gabapentin, flunarazine, verapamil, prothiaden, amitriptyline, imipramine, nortriptyline, lorifipramine, trazadone, seroxat, sandomigran.

Most of them, couldn’t tolerate side effects; the propranolol helped until over 40 mg then insomnia and loose bowels; the prothiaden helped initially then stopped; the amitriptyline helped with sleep and a little less dizzy but too sedated, couldnt get the dose up; the sandomigran helped a bit, then not.

This was many years ago. I am just beginning to try again.


Hey Chrisine,
What are your symptoms?
Sounds like you have been put through the ringer… which I am truly sorry for…


Wake up feeling hung over no matter how much sleep, up and feel dizzyish which develops into a headache every day and sometimes a migraine, occasionally get the zig zag lights, but that means a 3 day bad one. Most days, tired, fatigue, on doing nothing. If I actually go shopping etc., soon, sweating, dizziness, achy muscles, achy legs and thick head. Worse thing, the occasional severe vertigo attack, room spinning, cant move head an inch type, they can lay me up for 24 hours. I get neuralgia in temples and also at the back of the head where I had so many of my 3 day migraines which I dont get so much now.

Do you relate to any of this?

I have had all this stuff for 20 years now and sort of adapted to being ill most of the time, I do what I can when I can, dont know what it would be like to feel normal again.

Still you never know, we live in hope :smiley:

HI Christine,
I certainly can relate to waking feeling horrible… but then for me it just goes downhill from there. I am 24/7 dizzy, rocking, headachy, but I do not have the visual symptoms or leg heaviness that you describe. I also feel “sick” all the time. I don’t really venture out too much these days so with regards to shopping that would not even be a possibility. But yes, it would make me incredibly dizzy.

I have suffered for almost 2 years. I guess I am different than most because my MAV began about 4 months after I had a head injury. Never a migraine or dizzy symptom in my life until that fateful night when I was rollerblading in Central Park in Manhattan without a helmet. I have no recollection of what happened…

Yes, we must have hope, but some days it is harder than others…


Can definitely relate to your symptoms. I’m so sorry you’ve suffered for so long. have you tried meds? Forgive me if you already shared this info.



I’m sorry I just asked you about meds. I just realized that you just wrote about it a few posts ago.


Hey Lisa,

I never realised you had a head injury like that. Do you think it triggered all of this? Certainly looks like a prime suspect doesn’t it?

BTW, I’ve just about run out of valium so am rationing it like crazy. It’s too much hassle to grab some here in Canada. I can use Ativan I guess but it was too much. Might try just a quarter tab when the V runs out and see if it’s any better. What do you think?


Hey Scott,
Yes, unfortunately head injury although less common can precipitate MAV. Definitely the culprit in my case. Healthiest person before my accident… never even had a headache that I can remember needing to take an Advil or Tylenol for…

Yes, if you need, definitely use ativan. Same mechanism of action, but it will it you a bit harder and not last as long. That is why some find they need escalating doses and can feel addicted to ativan. Valium and especially clonazepam in my opinion are very mild in comparison. But, if you need to use it to get you through it is definitely better than nothing.

Hope you can salvage the rest of your holiday and don’t need to check yourself in to the hospital upon your return. Did you give yourself a few days before you go back to work. Maybe you can just hole up under the covers and hide. Don’t even tell folks who might be looking for you that are back. :smiley:


Hey Lisa,

I have one day only to get my sh*t together. I arrive at about 6 AM on a Monday morning after a 1.5 h flight to JFK, then 5.5 h to LAX, and finally 14 h to Syd … and then have to be at an all-day conference Tuesday. I’ll be able to just tune out I imagine if I feel like it. Hopefully I won’t be freaking out too hard at any stage. On Monday I’ll be seeing the doc for a barrel of valium to survive Tuesday. I just took a 1/4 tab of Ativan now. I’m migraining my head off tonight … was dizzy for hours which stopped and now the headache has kicked in full force. Yawn. Maybe the A will kill this.

Can’t believe that one event of knocking your head started all of this. So not fair.


Oh boy Scott! That sounds so grueling… I really feel for you. Hope you can get some valium and then when you get back are you going to see your doc about next steps?

I hope you made it through the night okay and the ativan helped a bit. Do you also take advil/tylenol to help the pain part? I think Buccholz in his book even uses this as a preventive which goes against every other doc’s advice. See, no docs ever agree with this illness.

I hope you can enjoy your last few days. I’m glad you had a few days where you could enjoy a bit.


Hi Lisa,

Just wanted to make a quick comment here. Your statement, “Yes, unfortunately head injury although less common can precipitate MAV.” was really interesting to me. May I ask if prior did you have ANY issues with balance what so ever? Head/facial injury can indeed cause MAV in some people, particularly if they have balance problems in their history (unrelated to sickness or inner ear injury). Dr. Furman confirmed this when I first saw him. He noted that my TMJ likely triggered the MAV in me, but that any blow to the face or head could have done it. I have some balance issues in my history (unrelated to sickness or injury) and he said that because I was already susceptible, the MAV was not a complete surprise. He also noted that at least in my case with the balance, the body is likely to compensate and get better on its own, along with some medication (which is has, also because my balance problem wasn’t that bad to begin with.) Right now I am really working more on the migraine-related issues.

Scott - great to see some posts from you, but sorry to hear of all your struggles! Hope you can make the travels home ok and can decompress as they say. I look forward to hearing more about your trip when you feel better.

I haven’t been on the board much myself, as I have been preoccupied with some things as well. Was in a car accident a few weeks ago. Thankfully was not injured other than a back issue that I am getting therapy for, but the paperwork and stress of dealing with insurance companies has been insane! (And it was totally the other person’s fault - ran a redlight and hit me.) Also, work has gotten more hectic and have some house issues to deal with. Plus eventually will share the story of trying to explain my health issues/concerns to a new dentist and how the people there gave me attitude when I needed to find out how much time/work would be done on me (for obviously, that affects my jaw/TMJ pain AND potential MAV triggers.) They thought I was questioning their abilities! Needless to say, the past month or so has been quite stressful for me.

Anyway, best to all. Still on Topamax btw, but not sure if it is working or if staying on it. Have to go to eye doc to make sure it is not causing problems there (have felt some pressure in one of the eyes.)

Cheers, Bonnie

Bonnie - so sorry to hear about the accident. But, so glad that you’re ok. Gosh - we have been through so much. I wish the world would stop until we get better. It is hard to deal w/ anything in addition to the MAV. Just wondering is Dr. Furman currently your doc? was topamax his first choice for you? what meds does he recommend. thanks

Hi Bonnie,
So sorry to hear about your accident. Glad you are okay.

With regards to your question about my prior history, I had perfect balance. I was a competitive athlete, runner, cyclist, rollerblader. I never had a health problem before my accident.