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Migraine – My Family Legacy

Anyone doubting that migraine is a genetic neurological disease need look no further than my family. Migraine is as much a part of my genetic makeup as my Nordic heritage. Anecdotal evidence indicates that both of my great-grandmothers (my maternal grandmother’s mother and my paternal grandmother’s mother) were migraineurs. Both my maternal and paternal grandmothers were migraineurs. My parents (both only children) were migraineurs. My mother gets cluster migraines. My father got migraine with aura. My brother and I are both migraineurs. My brother gets ocular migraines. My migraines started as migraine with aura and progressed to chronic migraine. My son (the only member of our family’s next generation) started getting migraines two years ago. He just turned 11. His father has no personal or family history of migraine, so my son definitely got this from me.

I can attest to the fact that migraine SUCKS. Coming to terms with the fact that you have an incurable, chronic disease is HARD. I’ve had 10 years to come to terms with this. Most days, I do fairly well with it. I really try to *own* my disease. It is a part of who I am. I don’t hide it. I (mostly) accept the fact that it places limitations on my life. I’ve lost A LOT to this disease – romantic relationships, jobs (including having to change careers), friendships, vacations, time – oh so much time. Doctor’s appointments fill my calendar every month. In any given year, I meet my insurance’s out of pocket deductible ($8,000.00/year) within the first three months. I wear a medic alert bracelet – something I used to think was reserved for diabetics, epileptics, and the like. My bathroom counter resembles a pharmacy.

I say none of this in an attempt to seek pity or to say I have it worse than others – not at all. I do not want pity. I know that there are people out there worse than me. I say this in the hopes that someone will read my story and know that I *get* it. I know that we keep going because the alternative isn’t an option (even though the alternative can be awfully tempting at times). I say this because I know how frustrating it is when people say “I don’t know how you do it“. Honestly, there are days when I don’t either. In addition to the small pharmacy I carry in my purse, I keep a migraine “emergency kit” with me at all times. Yet there are times that I find myself counting down the minutes until I can get home and take the heavy-duty acute medication in hopes of a modicum of relief.

Someone asked me if I ever prayed for a cure. Maybe, a long time ago. Now, I pray for an improvement – fewer migraine days, less severe attacks, few accompanying symptoms, more energy, better sleep, less hypersensitivity to everything, fewer triggers, better quality of life – I’d take any of these, or a combination thereof. Until that happens, well, I keep doing the best that I can – whatever that might be in a given day.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Joanna Bodner moderator
    3 years ago

    Hi there nevada_knitwit,

    Thank you greatly for taking the time to share your migraine story with us. It is truly amazing (and extremely unfortunate) just how strong family history plays a role as an underlying factor of migraine. I am so sorry just how much your family has been affected by this condition.

    I too wish that you find relief in the time to come which you SO deserve!! Have you by chance at any point been seen and/or considered seeing a true headache/migraine specialist? In case you were not aware, here is some information on how these doctors are so different: https://migraine.com/blog/how-are-migraine-specialists-different/

    Thank you again for sharing this piece of your migraine story with us and especially for being part of our community.
    -Joanna (Migraine.com Team)

  • nevada_knitwit author
    3 years ago

    Hi Joanna,

    Thank you for your kind words. I am presently under the care of both a headache/migraine specialist and a pain management doctor.

    My present treatment regiment (Botox, cervical nerve ablation (both sides), anti-depressants (two types), calcium channel blocker, anti-epileptics (two types), Magnesium, and CoQ10) isn’t providing adequate relief. I still have near daily migraines. On the rare days when I don’t have a migraine, I have a severe headache. Head pain defines my life – 24 hours/day, 7 days/week, 365 days/year. I have SO many triggers, that it’s easier to list things that don’t trigger my migraines.

    I have another MRI next week. After that, I will be going to UCSF Headache Center for a consultation. I hope that they’ll be able to provide me with answers and, fingers crossed, some more effective treatment options.

    Again, thank you for your kind words, and thank you to the entire Migraine.com Team. It has been a Godsend to be able to connect with other migraineurs.

    -nevada_knitwit

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