On Migraines and Life Happiness

I’ve been a chronic migraine sufferer since I turned 15. Thanks a lot, hormones. Until 2008, however, I always assumed they were sinus headaches because the pain was focused above my eyes. My migraines don’t have auras, and every commercial for migraine medicine you see announces that as a requirement for migraines. I saw a doctor in college for my headaches and she gave me an antibiotic for what she said was untreated sinus infection. I hadn’t been sick, but I thought, “Okay, let’s try it.” Then I was given allergy medication. That didn’t help. But mostly, the headaches weren’t too terrible.

By 2008, I was getting several severe migraines every week. I was under a lot of stress at work between library budget cuts and shitty coworkers and I didn’t feel like I was getting a lot of support at home. I would just sleep. A lot. More than 10 hours every night. Looking back, I realize that I was probably suffering from depression, but hindsight is 20/20 and all that… My primary care physician finally diagnosed me with migraines after I went in for a CT scan and there was nothing abnormal about my sinuses. It felt like a death sentence. Sinus headaches/sinusitis can be treated. Migraines? Not so much.

I saw a neurologist shortly after my diagnosis and he put me on preventative medication, Topamax. And things were good. My migraines were controlled. But then the dose stopped working. That happens. Your body gets used to the dose. Or something. And Topamax made my hands and feet tingle, like they were always asleep for the first several months I was on it. So I upped the dose and was fine. For awhile. In 2009, my life exploded. I was dealing with a boss from hell, a bad work situation in general, and, again, home life was not awesome. The stress trifecta. I had to start taking more Topamax to combat the stress-related migraines I was getting.

Currently, I’m taking 100mg of Topamax every day. When I first starting taking this dose some time in 2010, I was a complete and total space cadet. I would tell library patrons I would call them back and then just forget. I would put things down and have no idea where they were. It got to the point where I felt I needed to print out a list of the side effects and give them to my boss and the HR coordinator because my work performance was affected that badly. Eventually, things evened out a little bit. I still forget everything. My side of the reference desk is covered in notes, most of which I’m not even sure why I wrote in the first place.

Another side effect of Topamax is weight loss. When I started taking it, I was at my highest weight ever. I dropped almost 15 pounds shortly after starting it. I’m sure that’s a great bonus side effect for most people, but for me? Yeah. And I feel like it’s preventing me from gaining weight. I had to give up running because I lost too much weight. That was in December. I’m just now at my pre-running weight. It took me SIX MONTHS to gain it back.

Mostly, I feel like I can stop taking preventative migraine medication because I’m at a completely different place in my life. My work situation is completely different. I’m much happier here now. My home life is obviously completely different. I’d like to think I handle stress better (or at least differently) now. I used to be SO negative and I think I would hold on to the stress. I’m not that person any more. I’m happier.

Part of me is worried about what will happen if I go off the medication. Will I go back to suffering on an almost daily basis? I just don’t think I will. What do I have to be stressed and unhappy about? I’ve always gotten migraines when the weather changes and I still get those now. That will never change. But what I can personally change is how I deal with the stress in my life. I’ve been on this medication for four years. It’s time to try it on my own now. I don’t remember what it’s like to be not in this stupid fog, where even the simplest of words escape me and I forget my lunch on the counter.

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9 Responses to “On Migraines and Life Happiness”

  1. floopjack says:

    With the supervision of your doctor, I think you should do this. At the same time, it may not be the worst idea, even though insurance will likely not cover it, to find a holistic practitioner who might be able to suggest some things you can do to keep your stress levels down and to be preventative about getting migraines. I don’t know if you’ve seen a doctor or been to a center like this already, but maybe it would be worth investigating. I get migraines in times of stress and weather change. they manifest as textbook and it’s only like 3-4 times a year, so I don’t have quite the same experience.

    • Bitchy Librarian says:

      Yeah, I’m going to make an appointment with my neurologist today. I HAVE to transition down off my medication or else I could go into seizures (it’s really an anti-seizure medication). So I’m not fucking with that.

      No, I’ve been wondering about holistic things I could do. I should probably do yoga just in general. I get migraines when it’s going to storm even, not just at big seasonal changes. So that’s been a pain in the ass. But again, not prevented by the medication anyway.

  2. Nikki says:

    I’m in the same migraine boat, I can totally empathize! After hospitalization over still-mystery-severe-possibly-migraines-but-maybe-not headaches earlier this spring, I started topamax. My memory wasn’t as affected, but I dropped 12 pounds in two months. I just stopped eating. The anorexia only effects about 13% of topamax users and the weight loss sounds great and all, but not eating when you don’t have an actual eating disorder is really scary and sucky! I was on 150 mg a day and had numbness in my hands and face, and horrible afterimages at night and early in the morning. My doc recently weaned me off of it over a period of 2 weeks. While the side effects are mostly gone, my stomach’s shrunken so much I now eat less than I used to when I was a child!

    That said, I think you should talk to your neuro about weaning off the Topamax. I suffer from a few chronic illnesses and find that a patient’s intuition can help direct them in the right direction, when paired with a good, understanding doctor. Good luck with everything! Migraines SUCK, and are the reason I’ve been on continuous birth control for THREE years straight. Yep, you read that right! The last time I had a placebo week, I had a migraine for 3 weeks and kept hoping for someone to drown me.

    • Bitchy Librarian says:

      Yes! That’s just like me. Sometimes I’ll forget to eat because I just don’t have an appetite. I used to eat ALL THE TIME.

      I’m seeing my neurologist next week and I’m hoping he’ll wean me off it. The last time he increased my dose, he said that if I ever wanted off it to let him know, so I think he’ll be pretty accommodating about it. I’m excited to know that it only took you two weeks to get off the 150mg dose. I expected it to take at least a month. So that’s reassuring!

      Christ. That’s awful. My period sets off migraines, too, but not like that. Just the day I start. What did they do for you during the 3 week migraine? When I had one that lasted a week, I had to get two shots of Toradol in my ass (the first one didn’t take).

      • Nikki says:

        I used to eat all the time, too! Then there was just no desire. It’s a horrible place to be trapped in, even with the “benefit” of weight loss (for those that are seeking weight loss).

        My neuro started me on Cambia, which seems to work but then craps out after an hour. He says his wife really likes it and has been a migraine sufferer for over 20 years, so it might be something to look into. It’s basically just high end Diclofen, but the delivery method is supposed to help headaches more or something.

        My 3-week migraine: I’ve had migraines for so long, I didn’t realize that one should go see the doctor if a migraine has gone on for more than 48-72 hours. I’m sure you understand what I’m talking about. They basically threw Toradol and vicodin at me, then when that wasn’t helping, high doses of percoset. With the percoset came a supplemental prescription of zofran for the nausea. None of those helped much for the long term. To this day I’m not sure if the headache went away on its own or if the meds helped, but I’m just glad to not be so groggy and nauseous!

        Good luck with your neuro appointment!! Keeping my fingers crossed for you.

  3. Lou Lange says:

    I think it’s a good idea to get off of the Topamax, but work with your MD to wean off of it. Never just STOP a medication. I hope it works out!

    • Bitchy Librarian says:

      Oh for sure. I wasn’t clear about that in my post, I guess. I’m seeing my neurologist next week. It’s an entire process to get off it because it’s an anti-seizure medication.

  4. John says:

    Preventative medication is always a tricky subject. I have the pathogen for Lyme disease in my body . . . sometimes that means things flare up & I basically am a useless ball of John for some time, until I get on some heavy-duty antibiotics to battle the pathogen . . . but they’ll never completely get rid of it.

    But, doing so means that I deal with the stomach issues that you have with antibiotics, all of the time, and the increased likelihood that I’d end up with some ultra stupid drug-resistant ball of germs. So, I don’t take them . . . there are whole online communities who would urge me to keep antibiotics in my system, at all times, just in case . . . but, it’s not worth it.

    With all that said, I only get a flare-up once every two or three years . . . not several times a week.

    The research on migraines is that they’re triggered by any combination of factors, stress always being part of it. I know you’re not leading a stress-free life, but the stresses in your life are confined to those things that are SUPPOSED to stress you out . . . basically, you’re not a ball of stress all day and all night. And, because of that, I’d think you can investigate heading to a place where you aren’t on the drug at all (I don’t know if it’s advisable to just go “cold turkey” here — and I’m far too lazy to do any of the research), but I’d think you should try. It sounds like the side effects of the drug are enough that they’re affecting your life . . . and, if your migraines are manageable and/or non-existent (or happen very irregularly), well, wouldn’t that be worth it?

    • Bitchy Librarian says:

      Interesting. I have a friend who was completely debilitated by Lyme. She’s seeing a specialist that’s trying to shock the pathogen out of her system with antibiotics and a combination of medication. It had progressed so far for her that she could barely walk and she’s lost like 100 pounds. It sounds horrifying. I wonder if she’ll always carry the pathogen with her, though.

      Yeaaaah, that’s the problem with antibiotics. They’re good in small doses, but not all the time. Aren’t there also homeopathic remedies, too? Different online communities will say different things.

      Changing weather patterns will always be a trigger. And so will the start of my period. And you’re right, my life will never EVER be stress-free, but it’s a different kind of stress. And oh yeah, I’d definitely work with my neurologist on this. I have an appointment next week. The medication I take is anti-seizure medication and if I stop it cold-turkey, I can go into seizures. Awesome! I definitely think trying it is worth it. If I can do this on a minimal dose even, I’d be happier.