syrinx

The August edition of Scientific American has a detailed article on migraine.

The article shows that those of use who have claimed that this disease is profound, and beyond our abilities - were telling the truth. A truth we could not prove, that was based on a "feeling".

Everyone who trivialized our experience should be ashamed of themselves including my friend Oliver Saks who should apologize for that pathetic migraine book he wrote way back which set in motion a standard of treatment that was horrible.

Everyone who has migraine or knows someone who has it, please get a copy of this issue of Scientific American.

I can understand that 30 years ago it was difficult to establish what was happening. But you have to understand that he and his buddies state in that book that their professional paid research uncovered these facts. And that as a man of science, he could prove his claims. His "facts" set in motion a nightmarish life for people like myself, who don't have grants for millions of dollars to show that he was wrong. In fact, any time I stated he was wrong, it was often used as proof of how unstable I was, and that is why I have this pain. After all, he did his research, right? How could a nothing and nobody person like me claim that he was wrong?

His research and all the others that fell in line in support of these claims propelled the pharmaceutical companies to push forward with medications that acted on those facts. Especially the vascular dilation fact. While I don't think he came up with that one, he certainly confirmed it, and etched it in stone for all to see. He was a celebrity - and had lots of opportunities to promote this information, which no one took to task because he was the all knowing wizard, so why look behind the curtain?

This is another reason why I despise idiots like that "Amazing Randi" who is so busy showing that no psychic has collected his million dollars because they can't prove their claims. Well what about the scientists who claim to have proof - and it turns out they are wrong? Why doesn't he include them in his search for the truth? I don't see that bloated moron Penn Jillette "debunking" the beliefs about real illness. I raise this issue because I knew the theories about migraine were wrong, based entirely on a feeling. I just knew it. Something that those two dismiss as nonsense.

This SciAm article states that, in fact, the constricting of blood vessel theory was not only wrong, but the way we were medicated probably made our illness worse.

John Lydon wrote in this song Rise, "anger is an energy". Those lyrics were my comfort. I used my anger to keep fighting against this cruel stupidity that was perpetuated by people who had very impressive real estate as a result of their claims. It is that which I resent most. They got rich on bullshit. They made us look weak and silly as they established their fame and fortune. They stood in the way of any real progress that might have been made long ago.

U.S. Senate aide Fred Hutchins killed himself last week, and many people believe it was because his migraines were taking a toll on him. This is still under investigation, but most migraine chat groups and forums are saying they believe his illness led to this. I would add that the perception of his illness probably contributed to it. I cried when I read about his plight. Even if some other reason contributed to it, when you are in pain, everything is way more difficult than when you are not. There are no little problems when you are in agony.
Country western singer Gary Allan's wife killed herself because of migraine. You can read about it here.
The yardstick that I use to measure the impact of this is one I will never forget. My father stated that the bone cancer that killed him at age 45 was painful, but that he had migraines that were worse. He told the doctor, in front of me, that his migraines were worse than cancer. He never got the chance to live in a world with triptans that control our pain, or articles that show he was not crazy. He died when migraines and stomach ulcers were "psychosomatic".

So for my father, for Fred Hutchins, for Gary Allan's wife, and for all of us who struggle with this, you have a right to be angry. And you have a right to celebrate that the tide is changing and we might see a difference in how we are treated. That the "feeling" we had that the science was wrong, was correct. No one will give us a million dollars - because we still can't "prove" it. But our feelings were right all along.

I have an ex-boyfriend who I'd like to smack with a rolled up copy of this issue of SciAm. He bought into that psychosomatic crap while (like Penn Jillette) claiming that second-hand smoke was harmless. Idiot.

Hang in there my migraine brothers and sisters, I think we are about to see the dawn of a new age.

tags: migraine psychosomatic article scientificamerican sciam