“A Maybe Life”

I started getting migraines when I was in 5th grade. Essentially, my migraines went from zero to 60 overnight and I went from being perfectly normal to having a migraine every single day. Ultimately, I got an appointment with a neurologist who diagnosed me with chronic daily headaches, for which I was treated with Elavil, and migraines on top of that, for which I was treated originally with Compazine. For the second half of 5th grade, though, I could barely stay in school the entire day. I tried various medications with various success…I couldn’t even remember them all if I tried. In addition to hard-to-treat migraines, I have the incredible knack for getting the incredibly strange side effects that ranged from tingling in the extremeties to feeling like I had become a zombie. For the most part, I had many more good days than bad days.

My senior year of high school, I started having these weird episodes where I got an acute stabbing pain on the left side of my head that left me absolutely speechless. It made me stop in my tracks and at times it even made me lose my vision for a brief time. Nothing made it better, nothing seemed to bring it on. Worse, it started being accompanied by progressive weakness in the left side of my body and a facial droop, which occured over about 3 – 4 months. Fearing a brain tumor or TIA’s–after awhile, I suppose maybe I’ve become a bit of a hypochondriac in that regard–I went to the ER. This wasn’t typical for me in the least. I had always had typical migraines: relatively infrequent severe head pain on one side of my head accompanied by photophobia and nausea. What did they tell me in the ER? It’s a headache. Not even a migraine! They had to fish all over my arm for an IV because I couldn’t even make a fist with my left arm, couldn’t keep it held out in front of me, facial droop, clumsy walking because I had to shuffle with my left leg. There I was, terrified that something was seriously wrong, and they literally tell me to take some ibuprofen and go home. I think that’s where it really started going downhill. My first neurologist treated my like I was an addict because I was difficult to treat, and when I was in the ER, I discovered he had dropped me as a patient because I turned 18 about 2 weeks before the hospital visit.

So, no less terrified, I returned home and searched for a new neurologist. I got an appointment that May, got new medications to help with the odd new symptoms, and went off to college without a hitch. I felt phenomenal. I didn’t get a migraine I couldn’t explain and that my emergency meds couldn’t kick. For nearly that entire year, I felt amazing. One small catch: my miracle drugs interacted with each other and caused my heartrate to skyrocket. Mild exertion brought my heartrate up to 180bpm. My resting heartrate was up to about 145bpm at times. For anyone who’s never felt that, it makes you feel like you’re dying. Laying in bed made me feel out of breath and I felt incredibly ill. Called the doctor, switched doses and it brought my heartrate back down to a more reasonable (though still fast) rate. Everything was great again…couldn’t exercise without my heartrate jumping to close to 200bpm which is dangerous…but other than that, no pain.

That April, I started getting the “pain attacks” again. It started as once every few days, which became once a day, then multiple times a day, all the way to constant pain. This past summer, I was in a constant 8 out of 10 pain from May 31 through August, and even now I spend 60% of the month in pain. This summer was spent in bed, because I couldn’t do anything. I was in pain all the time. My neurologist put me on 13 different drugs throughout that timeframe, and I gained 20lbs from the various side effects. After a month of pain, I went to the ER because I was about to lose my mind…although, if you ask my family I bet they’d say I already had…and they just stared at me, wondering why I hadn’t come in sooner. Truth is, my neurologist started treating me like an addict too, giving me the third degree when I couldn’t answer questions well or when a new attempt was unsucessful at elminiating the pain. Then I heard the words I had feared: “There’s nothing I can really do.” I was bawling as the ER doc was trying to walk me through why most medications he could give me wouldn’t last that long and the best he could offer was to give me something to knock me out. It worked and I got about 16 hours of relief, which I desperately needed. But the pain came back and so did being an emotional wreck. Part of me was afraid that it would go on forever. It got to the point where I was practically begging for a brain tumor, because then it could be something they could carve out of me and I’d be free. No such luck there either.

After three months and 13 medications and even trying acupuncture and a restrictive diet, I started seeing the light again. The pain started going away in time for school to start again. The problem was that it wasn’t really gone. Instead of being in pain 100% of the time, I have a migraine about 16-18 days a month. My doctor thinks my standards are too high and sees it as improvement. I suppose I don’t accept being in pain all the time. At first, I started getting panic attacks every time I got a migraine again because I was terrified that it was starting all over. The anxiety has decreased, but when I start getting a migraine for more than 5 days the anxiety comes back. Now I’m on a new medication and I haven’t had a headache I couldn’t explain in awhile, but it makes me just feel ill. I have no appetitie, no energy but I can’t seem to fall asleep, nausea that’s worse than when I actually have a migraine. I feel like I can’t win. I went Christmas shopping with my mom today, and I told her I had to use the restroom because I was about to have a total emotional breakdown in the middle of the store, and instead I locked myself in a bathroom stall and just bawled. I was so excited to not have migraines for 3 weeks but I feel like my winter vacation is starting to resemble my summer vacation. I don’t go out with friends because I don’t want to be the only sober person among them since I’d have to choose between medication and drinking. I frequently have to cancel plans because I can barely get out of bed. I’m tired of feeling so sick all the time, and I like I spend more time in bed than out of it. I’m tired of being viewed as an addict, because trust me: I’ve truly considered it, except I can’t very well be a nurse if I’m addicted to anything. I don’t drink, I don’t party, I don’t do anything but study because that’s all I can bring myself to do most days.

I thought the commercial about how migraine sufferers life a “maybe life” was the dumbest thing when it first came out. I get it now, because I live it. I have to make plans at the last minute because I don’t know when I get up in the morning how I’ll feel for the rest of the day. I couldn’t even tell you the last time I even went on a date because, except for class, I rarely see the outside of my room. Aside from all the horrible things I’m terrified doctors will miss because my chart says “chronic migraines,” I’m terrified I won’t be able to have the dream job I’m trying so desperately to get because my migraines are out of control and I feel like no doctor will listen. How’s that for a “maybe life?”

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.

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