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Glenn,

I am afraid I just don’t understand where you are coming from on the migraine information front. I don’t want to keep perpetuating cycles, but you seem very determined to upset the revelations about migraines that doctors have worked very hard to unlock, so that they can better help their patients. Why is it so hard for you to believe that pharma and doctors work together to help people out? The understanding of many diseases isn’t advanced enough to promote a curing pill for every little thing, so there must be someone around to figure out how to treat the problems these diseases cause. By golly, if my doctors are so bent on making the pharma money, then they wouldn’t invite me to their offices to pick up samples whenever I need them. I’m broke, but they don’t sneer at me and turn me away. They hold out their hands to me and offer me help and advice, which is much more than any joe off the street will do for anyone. And they load me up, too. And many other offices do that as well.

Is it wrong for people to want answers about their conditions? What is it about migraines that you need to prove so badly that you have to refute any and all information about them with only your personal thoughts or theories behind them?

You know, I am a psych student. I’m very familiar with the DSM-IV. Now, the publication has its own set of problems. But for any of the mental illnesses named therein, any one of them could apply to any one person at any time just by reflection of symptoms onto the reader. It doesn’t mean those readers HAVE those conditions. But alldynia for migraines? Migraine is an over-stimulation of the body triggered by an event. If you can have sight or audio sensitivities, why is it so hard to believe that many of us have also have problems with touch or smell? My skin is always sensitive, it always hurts. It’s part of the migraine process. It’s not invalid at all. Not every migraineur experiences migraine in the same way, which is what leads so many well-intentioned people into thinking that popping one pill is all it will take to make it go away. But just due to the statement, one is not necessarily going to believe they have allodynia any more than I would think I have Borderline Personality Disorder just by reading about it.

The responsibilities a migraineur should have in dealing with their situation are these:

-Understand that YES, migraine IS a disease, but that doesn’t mean you have to bend to it and suffer.

-Education is the first step to taking your life back from migraines. I’m sorry, those of us who live everyday in pain do resent being told that their outlook can change their patterns of pain. Anyone can have a perfectly good day and then have it shot down by a migraine. I’m being honest with you. By the time I found ANY information about migraine online, I was averaging 26+ migraines A MONTH. That was when I knew NOTHING about migraines, except I began feeling neurological symptoms of numb hands, feet and face, along with slurred speech patterns and decreases in mental performance, and decided it was scary enough to get checked out. Oh, I knew I had migraines, but a well-intentioned doctor said I’d “grow out of them” and no one around me understood anything about them other than they hurt. Today, I STILL have 26+ migraines a month. I can’t really see where my attitude contributes to the cycle.

-Education comes in many forms, and sure, some things should be challenged, but to do so there has to be a logic in the process. To be honest with you, I think you’re more of a feeler than a thinker. That is to say, I think you talk a good talk but you don’t apply learning or logic to what you’re doing. You seem to blame doctors and pharma and the people active in the migraine communities for spreading so-called lies about the disease, when they have far more evidence behind them than you do. Really, you accomplish nothing by doing this. You just set yourself further apart, and whether you want to be associated with any of the research and medical camp or not, you do just as much harm to individuals who might try your approach and fail as you believe the others in our community do to others. You’d think by reading the “testimonials” on MMC that we’re a bunch of whining pests with nothing more to do than perpetuate our migraine cycles, but there’s a lot of love and thanks going around for the centralization of easily identifiable and easy-to-understand information. There’s a lot of people taking care of each other there because we know what it’s like to be trapped with no idea how to proceed. I see nothing like that here on your site. There’s no sense of love or comraderie with you, just a “try it and don’t believe what others might say about this being an uncurable condition.” And when some people discover your approach might not work for them, will you blame them too?

Logic encompasses a lot…And I like to pose this question because no one will ever answer it…What do you say about the women who suffer from migraines who have a sudden cessation after menopause? Women who haven’t done anything different from what they were doing before. Or what about the women who suddenly get migraines during and after menopause, but have never been susceptible to them except maybe during one or two episodes of multiple triggers? Surely you would think there’s a biological component there, right?

You yourself have not learned how to “not” have migraines. It’s easy for you to talk about all of these things, but you don’t apply the “walk a mile in my shoes” concept.

Glenn, I just don’t know about you…It’s OK to have you rown ideas but yours aren’t “the truth” and they never will be. It’s awfully big of you to think you’ve got the truth when hundreds of people down through the ages have perpetuated the same beliefs about migraine as you do (and yet they’ve had no success!), unlike the medical field who constantly works hard to advance our understanding of the body and the way it works. If there was a cure to migraine, many of us would already know about it and already have been on our way to a pain-free existence. Don’t consider your beliefs unique and all-mighty just because you think they are. That’s the first step to a harsh reality check.

I wish you all the best, Glenn, truly I do. It’s obvious that many of our opinions and thoughts don’t mesh well with each others’, but I truly do wish you well. In any case, this will be my last word on your blog. I think you do us all the great disservice you think we do to others. I’d ask you to look with your mind and not with your feelings…I hope someday we can all be agreed.