What beautiful day am I going to lose to this migraine?

The thing about migraines is…they are extremely painful and you can’t control them.

People who have not had a migraine may not understand: migraine pain is not headache pain. It is much much worse. I know for me, a migraine always feels like a red-hot metal poker has been pushed through my right eye and is coming out the lower-right part of my head near my neck. And the pain radiates and pulses and can become unbearable. Which leads quite naturally to the second-worse migraine symptom…the fear. Fear of the pain—because it is so bad, because you cannot predict its occurrence, and you cannot be sure the treatment will work.

From reading personal accounts online, I know that migraines can get so much worse than my experience, and my heart aches for those people. And still I stubbornly believe that I deserve more. I deserve a life that is migraine-free, or at least with a reliable treatment. I should not have to live in fear…of this evolving life-sucking monster that seems to live with me, and is soooo not welcome.

I don’t know what it is about migraines versus other illnesses, but I feel so sure that I should be able to control them. And every single time I can’t and I feel so crushed, so sh*tty. What beautiful day am I going to lose to this migraine?

I often find myself thinking of all the things I could do if I didn’t have migraines. Physical training programs, travel, more demanding/challenging/rewarding work. And I feel compelled to defend my pity-party train of thought. It is not some vague fear holding me back. It is a real legitimized fear; I know because I have tried these things and suffered and sometimes made others suffer for my inability to follow through because a migraine blew up my plans.

From my own experience and from reading others experiences online, I have learned that treatments that worked once don’t always work forever. What is up with that? To have a condition that evolves over time in its severity, frequency, and reaction to treatment makes for an illness that other people simply can’t believe. This affects your ability to keep a job (much less excel at it), be a friend, and have a life.

I wish that I turned bright blue every time I have a migraine so people will believe me.

Migraines are like the train coming at you and you are glued to the tracks. You can see them coming, accelerating faster and faster until they hit you full in the face, bowling you over, and you don’t know how long each train will take to pass over you. Or when the next one will come.

One thing I have learned is that pain is transformative; enough intense pain will make you sad, angry , bitter, unable to enjoy life, unable to be there for those important to you. Which leads to another thing I have learned, as many other migraine sufferers have: YOU have to take care of YOU. You must make migraine/pain management a priority in your life. And sometimes this is like having a second full-time job. But it must be done. To make you the best you, and avoiding the transformative effect of intense sporadically delivered pain. I am reminding myself of this every day.

I wrote this while coming out of a migraine, full of bitterness. So I apologize for the deep dark tone. The light side is, I am going to keep working to find a way to better manage my migraines, I’ll just keep seeing doctors until one of them has something that helps me, keep tracking my experiences to learn all possible triggers, and keep working with military focus on how to avoid them. And it helps that I have a partner who understands and is compassionate.

For those migraine sufferers out there, I wanted to share my treatment experience as well. I use sumatriptan with success: it will normally squash a migraine but will knock me out for a few hours. I take labetalol daily to help prevent them, it worked for about a year, but now it is not working anymore. If I catch a migraine super early, I have been able to stop it with lots of caffeine, some food, and a nap. My triggers evolve over time (what fun), mine are alcohol (avoid it completely now), restaurant food sometimes, dehydration/too much sun/too much heat, chocolate sometimes, too much sugar, any change in my sleep schedule (this one is the hardest to control), neck strain from upper body exercise, neck strain from driving too long, eye strain from too much computer time, and neck strain from sleeping at a wrong angle. I am suspicious that weather is a trigger too, but I’m not sure how yet.

I didn’t get my first migraine until my early 20s, and I experienced no migraines at all during my pregnancy. My mother experienced the same migraines, and they went away abruptly after she got her hysterectomy. So even though it is a big step, I am considering a hysterectomy to help. I’ll try a simulated/chemical menopause first, as that is reversible. Now…to find a doctor who has heard of this potential treatment. Wish me luck!

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