syrinx

Migraine

In this forum I will share my experiences with neurological pain in the hope that it may be of some help to other afflicted people or to anyone in medical research. It is not intended to be an expression of self pity or a cry for attention. Instead, I believe my observations and ability to express my situation have value for anyone wanting to uncover the reasons for this strange malady, as well as find methods of coping with something that is somewhat difficult to cope with.

Please understand that I have no hesitation in challenging the medical community's views if I believe them to be wrong. There are a couple of issues where that is the case and time has proven me to be absolutely right. I even took on the "untouchable" Oliver Sacks some 20 years ago as I will discuss later on.

Let me start by stating this: I do not believe that someone who has eight migraines in one year is experiencing the same illness as someone who has eight or more in a month (as I do). Perhaps the same symptoms - but the underlying cause is different.

Also, when I read statistics that declare how many people have migraines throughout North America, I am frustrated by the throw-away use of the term "migraine". Current data shows 20 million people in the US suffer from migraines. The numbers are very high, but I do not know many people who experience as many attacks as I do, in the chronic cyclical manner in which my illness manifests itself. One has to consider the types (and subtypes) of migraine, along with the complementary illnesses that are common to my category of high frequency/intensity to ensure a better understanding.

Clearing up the misconceptions
The following two points are critical to any future data I post. These two points provide the foundation for the perspective I believe is essential to improving the lives of people in that eight or more per month category.

This is from my doctor:

1. "Migraine Disease is not a psychological disorder. The disease and all its symptoms are neurological in origin and very, very real. Migraineurs are not neurotic, lazy, "high-strung", overly emotional, or fakers. They are in very real pain and physical distress."

When people criticize migraineurs they are being nothing short of cruel. They should instead marvel at the fact that migraineurs keep up with the non-migraineurs and sometimes even surpass them—while in pain!

And this is from my own experience:

2. In 1976 as my father (who also suffered from severe migraines) lay in his hospital bed dying from bone cancer, his doctor dropped by. I was visiting that day, and his doctor said to me, "you should be very proud of your father. He is so strong in the face of so much pain." My father turned to the doctor and said, "well actually I have had migraines that were worse." So his migraines were worse than the pain from the cancer that was killing him.

Again I stress that the above statements are not self pitying but are intended to drive home the message that this is a severe and debilitating illness that has a profound effect on the people who are afflicted. There is a need for honesty about the intensity of the pain and the effect it has on our lives. Also to be considered is how it affects the lives of the people around us—something we are only too aware of.

Perceptions
It is all too easy to perceive people like myself as being "antisocial". In fact, I would like nothing more than to be a social butterfly who entertains and "clubs" to all hours. But as my life unfolded I found this to be disastrous in the sense that I either got ill prior to the event, when I was at the event, after the event, or any variation in the set. This is such a common description I've read in migraine news groups that it is very saddening to think of the lost potential friendships this illness has caused. I've missed weddings, showers, birthdays, and such entirely due to my illness. Social life is the number one thing to suffer in life impact statements of those patients with eight or more attack per month. And the psychological impact of this creates a huge burden as we are saddled with a need to apologize for something we really should not apologize for.

I will post more over the coming weeks. I hope this has been informative and perhaps even eye-opening.