I had plans to go out with friends last night. A friend was in from out of town, it was a beautiful Saturday in Madison, and it would’ve been a perfect night to go to the Terrace and hang out.
Around noon yesterday, however, I knew that I was going to have to cancel. I was getting a migraine. I took some medication and settled in for a 3 hour nap. I woke up and made it to the bathroom in time to throw up. Yep, it was a migraine. Another Saturday night on the couch. Another night of canceling plans.
I’ve had migraines since about 2000—that’s as far back as I can remember, at least. I’ve had “headaches” since college, but my first recollection of migraines is in law school. They weren’t related to stress, but actually started after I had a freak accident at the doctor’s office. I passed out after a routine exam and fell on my head.
Since then, my life has been ruled by headaches. I wake up every day with a headache. On good days—which, thankfully, are most days—once I get going, eat, and have some caffeine, the headache goes away or is barely noticeable.
My bad days, however, are really bad. It starts off with the feeling that someone has clamped a vice on my head and is slowly turning the screws. Then, it feels like someone is stabling me in the left eye (it’s always the left eye), my arms go numb, my neck and back hurt, I’m nauseous, and everything smells bad. And don’t get me near lights. If I’m lucky, I take my meds in time and it only lasts a few hours; if not, I’m down for the count, stuck in a dark room with a bag of frozen veggies on my head (I’ve found broccoli has the best healing powers) and hoping I never have to get out of bed.
After a particularly bad 3 week episode in 2003, I was referred to a neurologist in Chicago. I was little skeptical because this doctor was a dead ringer for “Kramer” from Seinfeld; I imagined him sending me to a healer or prescribing me a tea that turned me purple. However, he did a bunch of traditional tests (the first of many MRIs and CT scans that have, happily, shown that I do have a brain), and put me on a cocktail of preventative medication.
These worked for a while, but in February, 2004, I hit my all time low. After having a migraine that would not respond to anything—I would’ve gone to a healer at that point– Kramer decided that I needed to go into the hospital. He thought it would be for a few days; it ended up being a few weeks.
After a few days of trying every medication he could think of—including IV Benadryl every 4 hours—wow—talk about feeling loopy!—Kramer decided to step it up. I don’t remember exactly what procedure was done, but whatever medication they used for this surgery was also apparently a truth serum, because while I was under, I told the surgeon that I thought he was cute and that I would convert to Judaism for him if we got married. Cringe. He told me another patient had told him that he was cheating on his wife while he was under, so I shouldn’t feel so bad. That did not help my headache.
Luckily the procedure did help, and while I was stuck in the hospital for my 30th birthday—Kramer and the nurses had a party for me with cake and flowers—I did finally get to go home a few days later.
Since then, my migraines have been much more manageable thanks to a consistent cocktail of medications. The trade off, however, is the side effects. For example, Topamax, the drug that has helped the most, is also the one I frequently contemplate stopping cold turkey. It is often called “Dopamax” due to the fact that it often causes memory and concentration problems; during my “Topamax moments,” I’ll be in the middle of a sentence and completely forget what I was talking about. Most people who take it lose a lot of weight. Me? I gained. The fatigue and weird food cravings it causes haven’t helped with that either. But this drug has helped me have a productive life, so if that’s the tradeoff, then I guess I’ll take it.
I’ve also tried every painkiller out there. No Tylenol or Advil for me. Ha; those are for amateurs. Ultram, super strength Naproxen, and vicodin are my go-tos. If a stranger looked in my medicine cabinet right now, they’d think I was a junkie; I probably could make a hefty profit on the black market if I tried to sell all the narcotics I have. I actually hate taking them, but I’ve accepted the fact that sometimes I have to do it in order to feel better.
Aside from medication, I have come to realize what my “triggers” are. I usually get migraines on weekends and on vacation—when I’m coming down from stress. It’s not very convenient. I get them after I fly. I get them more frequently on Tuesdays, and I get them if I don’t get enough sleep, if I’m dehydrated, or don’t eat on a regular schedule. Exercise—either too much or not enough—can be a trigger as well.
I’ve also figured out what foods I can’t eat. Peanut butter, hot dogs, yogurt, orange juice, bananas, fresh bakery items, pre-made sushi, peanuts, red wine, champagne, pineapple, onions and soy sauce have all caused migraines and are now forbidden. I have not cut out caffeine; Kramer told me to keep it in my diet since I’ve drank Diet Coke for so long and cutting it would cause my migraines to get worse. But I have to have the right amount—too much or too little will do me in.
Overall, I am incredibly lucky. I don’t have a fatal illness and I am able to live a mainly productive life. I constantly read stories about people who have had to quit their jobs or drop out of school because they are bedridden due to their migraines. That is not me.
However, while I know I am lucky, I am frustrated. Frustrated that there seems to be no “cure;” I have tried so many drugs and procedures, acupuncture, stretching, etc., and nothing has worked. Frustrated that I have to take pills every day and then suffer from annoying side effects of that medication, and that I have to take heavy-duty painkillers in order to get relief. And, most of all, frustrated that I continue to miss out on so many things.
I’ve missed birthdays, parties, work and volunteer commitments, chances to see family, and nights out with friends due to my migraines. I’ve had to cancel first dates ; guys think it’s just an excuse, which is understandable, so I usually don’t get a second chance. Now, it’s just easier not to make plans anymore so I don’t have to cancel.
I am lucky to have wonderful friends and family who are incredibly understanding. I can’t put into words how grateful I am for their support; I have learned so much about new treatment and medication options from the numerous articles they continue to send me. I hope they know how angry I am every time I have to cancel plans with them; how bad I feel when they “joke” that I don’t want to see them because that’s the farthest thing from the truth; how much I’d rather be doing whatever we had planned than sitting at home with this excruciating pain. I just want to be “normal.”
This is not meant to be a pity party and I don’t want people to feel sorry for me; I do enough of that on my own. 🙂 Just know that when I say “not tonight, I have a headache” I’m not making a lame excuse to get out of something. Just the opposite. It took a lot for me to make plans in the first place and there’s nothing I’d rather be doing; my head just has other ideas.