Migraine - Never Again

  • Can Migraine?There have been at least three losses this summer in which Migraine patients made a decision that ended their lives. When talking about this, I’ve seen / heard the surprise and sadness of doctors and specialists. That got me thinking.

     

    In the face of what severe sufferers endure each and every day, why do they seem so shocked?

     

    So, I wanted to share some potentially life-changing thoughts with you here.

    Can Migraine really be fatal?

    Most physicians will reluctantly admit they realize Migraine can be fatal, yet, in my opinion, most I talk to have not truly weighed how this happens.

     

    When I went to Washington, DC, to speak with legislators, I brought a special photo with me and laid it on the line by describing the death of a celebrity’s wife. Yep, I talked about that part of Migraine nobody wants to discuss. By the end of the day, the Migraine specialist who was with me was giving his own version of the shocking facts, and one of the other patients with me told of her own attempts at permanently dismissing her pain by ending her own life.

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    How can Migraine kill? Here is a short list you may never have before considered:

    • Migrainous stroke;
    • medication side effect;
    • medical mistake;
    • misdiagnosis;
    • accidental overdose, even from simple over-the-counter medications such as acetaminophen;
    • accident (often resulting from Migraine symptoms or side effects of medications)
    • the purposeful ending of a life (suicide) to escape unrelenting pain and other debilitating symptoms, severely reduced quality of live, the stigma associated with Migraine disease, and more.

    I’ve been to conferences where I was shocked to hear the comment “Migraine never killed anyone.”  I thought, “Wow. They sure don’t live in my world. How can they not see what I see?” I was really confused and frustrated.

     

    So, why the disparity?

     

    I’ve talked with the same doctors and know they privately admit they know Migraine results in deaths. So, why the denial and apparent inability to discuss the problem?

     

    I have a theory…

     

    We already have a related problem. Death certificates rarely tell the true cause of a Migraine related death. For example:

    When a side effect of a Migraine drug caused a death, it’s written down as an adverse medication reaction. A Migrainous stroke, or a stroke that was misdiagnosed as a Migraine is simply recorded as a stroke. If someone died in a car accident because they got an aura which caused a crash, it’s recorded as a traffic accident. If a patient chooses to end their life, it’s recorded as a suicide, yet Migraine pain will not be mentioned as the ultimate cause.

    How can a doctor know their patient has died as a result of their Migraine disease if nobody informed them? Should we be angry they don’t know what’s happening in their patient population?

     

    For Migraine patients on the difficult end of the disease spectrum, frustration with a doctor that results in the termination of the relationship is fairly common. The patient gets frustrated and says to themselves “Never again!”

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    On the doctor's side, physicians focus intently on the patient at hand. They concentrate on the person in the room they are getting ready to visit next. If they’re in your room, they’re thinking about you. When you’re a patient, this is a wonderful thing! This is why we get good care from our doctors – their minds aren’t on next Thursday’s golf game, but on the issue at hand: our health.

     

    Consider however, that our doctors have literally thousands of patients. They often easily recognize many of them outside the office and even remember key parts of their progress, diagnoses and treatments, all without notes. They can’t possibly keep track of them all, however.

     

    It’s unfortunate that Migraine specialists and other doctors who help chronically ill patients are used to angry or unsatisfied patients leaving their practice with no notification. In fact, notification that a patient has left and why that has occurred is actually fairly rare.

     

    Abra-ca-dabra POOF! and the patient has vanished.

     

    As patients, we do our doctors and our sister / brother patients a disservice when we leave a practice – for any reason – without notifying that doctor and giving him / her the reason why we are leaving. Yes, it is icky and unpleasant, and confrontational. I also feel that it is our duty so that the practice might be made better for the next patient down the line.

     

    In my experience, most patients who decide to leave have made up their minds before they walk out of the treatment rooms during their last appointments. They miss out on the chance to give valuable feedback that could help another patient or save someone else’s life.

     

    And to those family members who have lost someone due to their Migraines, please, please consider contacting the doctors involved and let them know the circumstances and what happened to your loved one. If you can’t do it, consider assigning a friend or family member to give the news. But I ask you here, to please, please, let them know what happened.

     

    Our doctors will begin to feel increased urgency when they realize how many people are truly being lost to this disease. That urgency can create a chain reaction to help move mountains, and right now, that is what the Migraine community needs.

     

    Live your best life,

     

     

     

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    © Ellen Schnakenberg, 2013.
    Last updated August 28, 2013.

Published On: August 29, 2013