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Putting Up With POTS

A Blog About Life With Chronic Illness

My Experience With Migraines

Writer's picture: jdsantacrosejdsantacrose

I’ve had migraines for nearly a decade now. I was diagnosed by my primary care physician in 2013 but they could mostly be controlled through lifestyle changes and over the counter painkillers, so I put off seeing a specialist. One of the things I find the most challenging about migraines is that they make me super sensitive to the light from screens. While I have a migraine I cannot be on my phone or computer for more than about 30 seconds at a time. I can make a phone call if I need to or read a text but I really can’t do anything else. Because of that, migraine days can feel very isolating.


Another tough part of migraine days is that my anxiety and depression always feels worse and my emotions always feel bigger. The trouble is it’s my brain that isn’t working well and I need my brain to process all of those difficult things. It feels like running a marathon with a broken foot. I often try to do some journaling, which can help a bit, but my focus isn’t very good on migraine days either. I get stuck in my head with all the bad feelings and strong emotions but my head lacks the ability to think straight. That all creates a type of psychological pain that in many ways defies description. Add to that the isolation I feel from losing many of the most common forms of modern communication and you can see how that can feel distressing. And none of that is even getting into the physical pain of migraines.


There’s a known link between migraines and mental illness but scientists think it is a bidirectional link. It’s not that one causes the other, it’s that they both influence each other. The recommendations are to treat both the mental illnesses and the migraines. It took a number of years before I finally went to a migraine specialist. I wish I hadn’t waited so long, so if you’ve been putting that off I would encourage you to make the appointment. I had other health problems that always felt more pressing, plus I think I was scared that I would go to the specialist and they wouldn’t have any ideas for me. I chose the hope of a future treatment plan over the fear of there not being any treatments. As it turns out though, there are lots of treatment options available for migraine sufferers. Everything from further lifestyle adjustments, medications, supplements, and devices.


My neurologist had lots of ideas for me to try, and about half of them have helped. Nothing was a silver bullet that solved everything but help is still help and there are even more things I can try in the future. She’s also proved to be an incredibly encouraging person to have on my team. The last time I was in for an appointment she called me “Jessica, my warrior.” The first time I saw her she exclaimed about my “beautiful episodic migraines.” I always love talking to people who are really into their thing and this woman is really into migraines. Being called a warrior can feel a little silly at times but I really think it helps that she is acknowledging how hard it is to live with migraines and other chronic health problems. I’ll take silly over dismissive any day.


The best advice I have for any migraine sufferers out there is to document your experience and go see a specialist. I ended up just printing a single page year long calendar and circling migraine days in red. I then noted things that seemed to be relevant on that calendar. For me, hormones seem to play a big role so I marked (in a different color ink) the start of my periods each month. This was not any sort of elaborate tracking, I didn’t write notes about how it felt each time I had a migraine or even the severity of the migraine. It was really just an overall map of when they were happening. That let me see very clearly how linked my migraines were with my menstrual cycle. It’s also allowed me to see progress very clearly as we have tried more treatment options. I can visually just glance down and see less red circles. Your main triggers may be different from mine, but some very simple tracking can help your doctors help you much more efficiently.


I don’t have my migraines all figured out, but I’m working on it with the help of my neurologist. And I encourage anyone else suffering with migraines to start trying to figure some pieces of this puzzle out. You don’t have to just suffer with this. There is help out there to be found. And for what it’s worth, I think you are a warrior.


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