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Migraine connect: For those that do not get it letter

We all get people who do not get it. And when you are struggling with treatment, work and the pain, the last thing you need is people not getting it. Sometimes it is the boss, I have a great one, but she is getting as fustrated as I am that we cannot resolve this treatment satisfactory fast enough. Sometimes it is a co-worker thinking you are using 'headaches' as an excluse... I thin k my co-workers are great, but they also are stress by now knowing when I will be at work and working for me. And sometimes it is actually the spouse who does not get it, which I also do not have thankfully, because I believe that would be the worst. Also doctors can not get it, they can be mis-informed and they can think you need a shrink or lower your stress. So this letter is for them all, give them the facts.

These are the key points in the letter, followed by the web link to it (that site is awesome for support and information.)

"Based on the most recent U.S. census statistics, Migraine Disease affects nearly 36 million people in the United States alone.
Migraines are NOT headaches. Migraine is a genetic neurological disease, similar in some ways to Epilepsy. The head pain of a Migraine attack is only one symptom of an episode of Migraine Disease, just as a seizure is only one symptom of an episode of Epilepsy.

Migraine Disease is NOT a psychological disorder. The Disease and all it's symptoms are neurological in origin and very, very real. Migraineurs are not neurotic, lazy, "high-strung," overly emotional, or faking. They are in very real pain and physical distress.

Not all doctors have the experience and knowledge to properly treat Migraine. Finding a doctor to properly treat Migraine is one of the most important, and sometimes most difficult, steps in treatment.

There is NO CURE for Migraine. Most Migraineurs, with the help of a qualified doctor, can find preventive regimens that will prevent many, but not all, Migraine attacks.

Migraine abortive medications such as Imitrex, Zomig, Maxalt, Amerge, Axert, DHE, and Migranal, do not work for all Migraineurs. It is sometimes very difficult to find medications that will relieve the pain and other symptoms of a Migraine attack.

Migraine attacks can be dangerous. If the pain of an attack lasts more than 72 hours with less than four pain-free hours while awake, it is termed Status Migrainousus, and puts the sufferer at increased risk for stroke. A Migraineur in Status Migrainousus needs immediate medical attention.

A Migraine attack can, in rare cases, actually be fatal. An otherwise healthy 21-year-old member of our community died of a Migrainous Stroke in November, 2001.

Migraine Disease can be disabling for some Migraineurs to the extent that they qualify for disability income or qualify for the Americans with Disability Act provisions. There are many whose Disease is so severe that doctors are unable to control the attacks, and the Migraineur is unable to work or participate in "normal" daily activities. When a Migraine attack strikes, most Migraineurs desperately need a dark, quiet place to lie down.

Migraine attacks can be triggered by many things:
Perfumes and fragrances from other sources are a very common Migraine trigger. If you live or work with a Migraineur, please refrain from wearing fragrances around them.
Bright and/or flickering lights, especially fluorescent lighting -- some Migraineurs need to wear sunglasses, even inside.
Many foods can be triggers, especially foods prepared with MSG.
Loud noises and crowded places can also be triggers.
Changes in weather are triggers for many Migraineurs.
Cigarette smoke, exhaust fumes
Each Migraineur's triggers vary. There are many other potential triggers. This list is just a beginning.

Stress is NOT a Migraine trigger. It is what is called an exacerbating factor that makes Migraineurs more susceptible to their triggers just as stress makes anyone more susceptible to the virus that brings on the common cold.

The Migraineur(s) in your life need your help and understanding. They need you to realize that they cannot help being ill, they are not "having headaches for attention," and they are sometimes unable to care for themselves. If they need medical attention, they need someone to take them and be with them. As well as being extremely painful physically, Migraine can be devastating emotionally and to relationships and careers. Since the disease is so misunderstood, Migraineurs often feel alone, isolated, and desolate. They also often feel guilty because they are not able to "be there" for their family and friends as much as they want to be and because they may have to miss days of work. The Migraineur(s) you know need not only your help with getting their medicines and any medical care they may need; they need your moral support every bit as badly. A good, solid support system is as important to Migraineurs as their health care teams. YOU are very important to them. That's why it's important that you understand Migraine."

By Teri Robert

RE: Understanding Migraine Disease and Migraineurs
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