Migraine

Hi,
if migraine is a genetic disorder, or a pluri-genetic one, it should be of interest to the community to collect information and identify phenotypes and isloate specific mutations in the neuro-vascular metabolism. Is this research already in progress somewhere? How could we contribute to this?

Luc,

-:¦:-•:*'""*:•.-:¦:-•*Hello!*•-:¦:-•:*'''''*:•-:¦:-•*Welcome to the family!*•-:¦:- •:*'""*:•.-:¦:-

Hello and welcome to our forum family! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start.

Due to improved imaging technology that has allowed researchers to observe that a great deal occurs in the brain during a Migraine before there is any vascular involvement, the vascular theory of Migraine has now been abandoned. It is now known that the very brief vasoconstriction and subsequent vasodilation are SYMPTOMS of the Migraine attack, not the beginning or cause of it.

Genetic research is very, very exact and demanding. From my discussions with genetic researchers, there is probably nothing that we can do independently to contribute to their research. The best thing we can do is keep our eyes open for opportunities to participate in their research.

Hi Teri,

First I assure you I do want not sell anything.
I am a migraine sufferer with a curious and penetrating mind and I cannot satisfy myself with the answers I read about migraine.

I have read the policies and guidelines: "family-friendly" language, does it mean that I have to exclude from my post any unusual word ?
I think it would be a bad idea to do that or to forbid the expression of unorthodox ideas.

I understand what a therapeutic approach means: basically it implies the "we know, don't worry, we can help you" discourse. For psychological reasons, this basic approach represents half the chances of success for a treatment. but the truth is that we don't know, not yet, and we have to know better.

Personally, I would not give any money to a scientist who would have given me the answer: "no it's very difficult, you are too dumb, we only are smart, you can do nothing". He should at least have asked for your migraine, all that you know about it: history, timing, symptoms, triggers, and any other genetic trait or disease you could have, idem for your ancestors and children if any, and have put that together with millions others volunteer's answers into a large database. After that informatic tools would have isolated patterns, singular associations, clues, even perhaps in relation with any known genes possibly implied in the migraine physiology. That yould have been the correct answer to me.

Luc,

I didn't think you were here to sell anything. Family-friendly language essentially means no cursing. We give every new member the link to the policies and guidelines, just as we give them the link to start learning about Migraines. When members are new, we have no idea who they are or what they know, so those are standard links.

From my personal experience with two Migraine specialists and researchers and professional experience with many others, I can tell you that the "we know, don't worry, we can help you" approach is NOT typical. Their approach is more "we know some, we keep learning, we won't give up if you don't give up."

As for your last paragraph, we're all entitled to our opinions. I'd rather provide information in the format requested by scientists to fit into their research than collect a great deal of information that might prove useless because it's incomplete or undocumented.

Thank you Teri for your post.

But I will push my thought a bit further: Let us consider the plethora of those drugs that are prescribed today: "it may work for you, but we don't know exactly how it works".

This situation means only one thing: the basic research is not adequately funded. The reason behind this is simple market logic. No pharmaceutical firm wants to discover that a diet, for example, may be a better treatment than this costly clinically-tried "may work for some people with migraine too, try it buddy" drug.

That is where a community like this one may intervene.
We could say: "Enough of this, we want real knowledge now, we are ready to be part of this research effort and we may even give money for that."

What do you think?

And if the money is not lacking, then the transparency is at fault. And maybe the scientific community needs something else.
In french we would say "peut-être ont-ils besoin d'une petite engueulade".

"Come on, you lazy scientists, doing nothing around the coffee machine, with bored faces out of your white blouses!
Come on, where is your flame, where is your passion, where is your imagination, your intuition, your deductive capabilities, that you cannot find anything valuable in years?
Come on, give me thoses tubes, give me those keyboards, that I make you blush from shame at your poor results.
What can you not find, that is so obvious, so much under your nose that you cannot see it?
Have you at last found that common denominator in those food triggers?
Have you not mapped yet the entire metabolism of the serotonin?
Have you identified the enzymes implied? Have you not located yet the code for those proteins on the genome?
Where are those GATACTACGAC in excess that render those proteins not functional?
Have you not yet confronted your results with the blood of those patients?
What have you done, then? Do you want me to withdraw that funding and give it to another team?

That, I think, would be the proper things to say.

As someone who knows many of those scientists, I will tell you that I think it would not the proper things to say.

Luc, do you know any of the scientists studying Migraine? I think not or you wouldn't say such things.

Hello, Luc,

Nice to meet you.

I have to agree with Teri that the list of things you think would be the proper things to say to scientists would not be proper. Now, you did preface that with saying those would be the things to say if money were not lacking. BUT it is very much lacking.

It seems that you're thinking of an ideal world, not the one we must actually live in.

Few researchers have the luxury to do research full-time because of the lack of research funding. They are doing their best with the funding and support they have.

BTW, since you're from France, you may not be familiar with Teri's work. She is the leading non-physician Migraine expert in the US. She attends conferences to learn about Migraine and other disorders from doctors and researchers from around the works. Her book, Living Well with Migraine Disease and Headaches, is the best book out there. She DOES know what the research world is like.

Hi Teri,

Do you think my previous post is outrageous?
Are the scientists you know hovering so far above any critic, above any supervision of their work?
Shouldn't it be useful for them to know how their work may be perceived?

I am sure my opinion is not isolated.
And I think we all need a bit of contradiction in order to progress.
And if my critic is completely irrelevant, then let us laugh at it, I don't care.

But unless the migraine researching scientists have a better communication with the public,
unless they tell exactly what they research, and what they have found,
unless this information is accessible to all through a quick internet query,
unless everyone can see what have been obtained for the public money spent,
then I will consider my critic perfectly relevant,
and that is what I mean with transparency.
and perhaps a community such as this one could be a good place to initiate that communication and provide that information?

Luc,

This site often has articles about newly released research. Beyond that, I think you're being unrealistic. Given the terminology you use, it seems that your knowledge of biochemistry and other medical fields is above that of the average person. For most people, raw research data would be confusing at best.

In any case, I suspect we are not going to agree on this subject, so I am choosing not to pursue this conversation further. I do not mean this as an offense to you, but I need to be working to answer questions here and on the main part of our site, writing articles, and doing the rest of my job.

I am sorry we disagree Teri.
But this forum is great and you do a great job too.

Concerning research, Helsinki University has done a great job recently in migraine genetics, but US research seems insufficient to me.

The people interested may know this link already, but it provides a good survey:
http://www.ninds.nih.gov/disor...adache.htm#138063138

see you Abi

Dude!

What is your problem?

Man, if that's the way you talk to people, you'd get nowhere fast here in the states. Rude doesn't even begin t cover it.

Look at some of the older conversations in a place before you barge in and start criticizing, man. If you had done that, you'd have seen that there's a huge problem with research funding in the US, AND you'd have seen that Teri is one of the people working hardest to get that changed. You don't need to be sitting there telling HER that US research is insufficient.

Do you have too much time on your hands, or are you just lacking in sense and manners?

Luc,

I think you may have an incorrect opinion of Teri. She is not protecting any researcher or drug company. She is an incredible patient advocate and a voice in the wilderness for migraineurs everywhere.

*****SCIENCE CONTENT****

That said, you sound like an educated person, but you are throwing terminology around. Migraines have been studied, but are still poorly understood, and unfortunately, poorly funded. More basic research is needed to continue to understand the real mechanisms behind the disease.

So that you understand where I am coming from, I do have a degree in biology and have participated in research in developmental neurobiology, but nothing involving migraine. I'm completely incapacited by my migraines now, and no longer work at all.

Scientists have used what they have learned about the mechanism of migraine to treat it. They know that The calcium channels of nerve cells are flooded with calcium ions in the cascade of a migraine attack. So physicians use calcium channel blockers like Verapamil to prevent migraines. I actually take Verapamil myself. That makes sense, right? It should shut down the whole cascade. Well, I still get migraines. Even with Verapamil. Even beautiful, simple science isn't always perfect.

I hope you can understand what our forum is for, Luc. I think you have things that you can contribute. We are not about the basic science of migraine. Perhaps the language barrier makes things a bit more difficult as well. We support each other, answer each other's questions, and generally enjoy each others' virtual company.

Jon and Melissa,

You should realize that I do not criticize Teri, nor do I criticize Teri's work here. Is Teri uniquely responsible for all the research that has been done in the world? I don't think so. This is not personal and has not to be.

I simply express my frustration at the poor results of research and I propose to document that view, to understand this, to contribute and to help make progress, not alone but together. And I think that funding is only one part of the problem. The psychology of the scientists may be one too. That is why I made this rather insolent, but funny, take-it-as-a-joke post about migraine scientists. Is it so offending to you that someone may express his own opinion here in an unconventional way?

Must I leave this forum because of intolerance of my different point of view? Wouldn't that be a form of censorship against me and a somewhat sectarian over reaction from you?

And Melissa, I think terminology is not the point here. Do you realize that after all those years of research no one seems to know with any certainty, for example, what substance is the food trigger in yeast bread, nor how those simple food triggers act? This is not cutting edge esoteric one-of-the-kind-machines-requiring complicated words research here, this is relatively simple clinical and pharmacological trials. Would you follow blindly the good doctor that tells you take this take that while he cannot even answer those simple questions? I would not.

And Jon, I think it is you are being rude here, not me, and I think I could have considered that your post is not even worthy of an answer. But see, anger can be controlled and insults avoided. please try it.

Luc,

Your post did not come across as "funny, take-it-as-a-joke" to me. To me, it came across as quite critical and almost nasty.

That may well be a function of the language difference or merely the disadvantage of the written word where one cannot see facial expressions or hear tone of voice.

I would attempt to mediate a bit here. In that role, I would suggest that rather than telling established members such as Jon to control anger and avoid insults, you -- as the new person here -- take a bit more time to get to know people and let them get to know you. Also, the little smiley faces can go a long way toward showing your intent and tone.

quote:

That is why I made this rather insolent, but funny, take-it-as-a-joke post about migraine scientists. Is it so offending to you that someone may express his own opinion here in an unconventional way?