My preventative medication has gotten increasingly complex over the past two years since I started taking it. I take 11 pills a day. Yes that's extreme. I use pill boxes (am and pm) and I feel like an old lady at times. But I think that my headaches are fewer in number and lower in severity. (Note that I am saying headaches here in part because I deal with migraines as well as more mild headaches and I started much of the medication to deal with BOTH of those.) So...on a daily basis I take:
- 1 multivitamin (for general health, not tied to headaches)
- 2 500mg magnesium gluconate supplements
- 4 100mg riboflavin (b2) supplements
- 4 25mg topiramate pills
When I do get migraines there are two ways I can get them, consciously or unconsciously. That doesn't refer to whether or not I'm passed out, but whether or not I'm aware that I'm getting a migraine. So I might wake up with a migraine or gradually have increasing headache pain that I don't think will be a migraine until BOOM it's a migraine. Those are the unconscious sort. The conscious sort are the type where I can feel my jaw clenching and know that a migraine is building.
So if I have a conscious migraine, treatment is usually easy. At the first signs of migraine, I take sumatriptan (imitrex) and usually ondansetron (zofran). I'll often nap at this point before the pain to make sure I sleep through any actual pain. If I can catch it before the pain starts, I'm usually fine.
The unconscious migraines suck. That's the best way to put it. They sneak up on me and by the time they're there the sumatriptan won't do any good. (Why? It has something to do with how the brain functions during a migraine. I learned about it on Fresh Air.) So I usually will take the ondansetron and ibuprofin and hope for the best. I'll try to rest, but if the pain's bad, I won't be able to sleep. If it's bedtime I might take benedryl instead of the other medicine. It can calm my stomach, help with the pain, and knock me out. The odds are 25:1 that if I end up in urgent care or the ER it was because of an unconscious migraine.
Occasionally, but rarely these days, I'll end up with pain bad enough that I go to urgent care, or on a Saturday or Sunday night, the ER. There they give me shots or an IV. It depends on the clinic and doctor what they give, but the idea is two fold: to abruptly abort the pain and to eliminate all nausea. (My nausea is mild compared to some migraineurs, but it's bad enough that I can't eat while I have a migraine. In part this is due to the fact that during my early migraines I would throw up, something that hasn't happened in years now. The memory has managed to stick with me though.)
I applaud you for sticking with this post if you've made it this far and I assume, if you have, that you have a personal relationship with migraines or someone who has migraines. I'd be interested to hear what works for other people for both preventative treatment and pain management. Back to the fun stuff tomorrow!
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7 comments:
First!
This isn't actually flippant: have you looked into pot?
Greetings Katie!
Simon's sister here. Simon suggested I read your blog entries about migraines as I am a fellow sufferer. They were quite interesting. I can't say I have my migraines completely licked, but they are pretty well under control at this point, only coming out to haunt me once a month or so (around the beginning of my period) and are quite mild compared to what they once were. Thought I'd share my experience with you in case it's at all helpful. I'm thankful to say that I've never ended up in the ER, but there have been a few occasions when IV medications and cool crisp hospital sheets sound mighty appealing. Trouble is, by that time I usually can't imagine how I would get off the couch to get there.
I, too, take a handful of pills every day. Must be the migraine cocktail! It's changed a bit over the years. I've been through Inderal and Propanolol as maintenance medications. Both worked ok, but not great. During college I had a three week period where I had prolonged numbness and tingling on my left side. Worried I was having some sort of stroke or other terrible neurological problem I went to the campus health center. After passing all their neurological tests, I still insisted to them that something was wrong, so they sent me to the local hospital for a CT scan and then an MRI. It turned out I was having a "neurological" migraine. Silly me, I thought that's what they all were. Guess not. At any rate, the neurologist who I saw at that time, told me I shouldn't take Imitrex because it could cause that condition to become permanent. My current doctor isn't sure that's the case, but we've avoided that medication nonetheless.
I now take:
200mg Topiramate
250mg Magnesium
1 tablet Super B-Complex (thiamin, riboflavin, niacin, B6, folic acid, B12, biotin)
Trinessa (generica for Ortho Tri-Cyclen)
10 mg Zolpidem (generic for Ambien - taken as needed)
1 Women's Daily Vitamin (just for good overall health)
10 mg Zyrtec (for allergies)
So, the Topiramate (or Topamax) is great. I don't know how long you've been on it, but I love it. I worked up to the 200 mg from 25 mg over maybe 8-12 months and have been on the 200mg dose for probably almost a year now. That tingling problem that you're having is something that happened to me when I first started taking it and then again each time the dosage was increased. Very weird isn't it? I noticed it happened most frequently when there was a temperature change. So, it was worse when the weather was cold and I would walk indoors after being out in the cold. Or, if I took a hot shower, my hands and feet would get all tingly. Anyway, in my experience it went away after I got used to the dose. It was just annoying in the mean time. It hasn't happened for quite a long time now. Stick it out if you can stand it and if your doctor wants you to increase the dose after you've gotten used to this level, go for it. My migraines definitely improved significantly by the time I got to the 200 mg dosage. Although make sure you always check with your insurance company to make sure your prescription coverage doesn't have a spending cap. Topiramate is super expensive (the last time I checked my 3 month supply by mail order was $733 before copay) and you can easily go over a low insurance spending cap in one year. I learned that lesson the hard way and had to pay out of pocket!
The magnesium and B complex were recommended by that first neurologist I saw and so was calcium....which I made sure was covered by the daily vitamin.
To be continued....
I have triggers like certain cheese, chocolate, alcohol, prolonged, loud noises (like concerts or bad wedding DJs), but my worst trigger is my period. And so, on to the Trinessa....my migraines are very hormone related. When my doctor first suggested birth control pills I was very nervous because I had heard that BC could make them much worse. But she said they could also drastically improve them because they could help to regulate my hormones. I always had a pretty regular cycle, but who knows what those wacky hormones are doing, so I was willing to give it a try for a month or two. I figured if it was really awful the first month, I'd just stop. It turned out that the Trinessa was part two of the solution to my migraine problem. It just seemed to even out my hormones significantly so I wasn't experiencing such highs and lows every month. I don't know your situation with BC. You mentioned that you and your doctor had taken that off the table. Obviously you ruled it out for a reason, but if it's just a fear of them getting worse, why not see if a low dose pill would work. Try it for a month or two. Maybe try more than one pill. Each one is really different. Due to a mix up, I was on the wrong pill for a month. It was the generic for Ortho Cyclen instead of Ortho Tri-Cyclen. I could tell the difference after just two weeks. (Even different generics for Ortho Tri-Cyclen seem different to me, one I liked and one I didn't.) I FELT different. Might be worth the risk of a possible migraine if it means that the other alternative is almost no migraines.
The other thing that is huge for me is sleep. And I mean huge. Like an elephant. I've always been a night owl. I still am. Ask Simon. I always want five more minutes to read my book before I go to sleep. At some point, I think in college, it turned from night owl to insomniac. And then I just basically got to the point where I slept the normal amount, but at the wrong time. So, I would go to bed at say 2am and sleep a normal eight hours until 10am. And then have a "normal" day until I went to bed again at 2am. Trouble is, once you have a real adult life and a job you have to get up at normal hours. So I would get up at 7am, but I still couldn't go to sleep until 2am. Or sometimes 3am. So I would have to make up those lost hours my sleeping in on weekends until 1 or 2 pm. This is just no way to live a life. So, finally, when the migraines were unbearable I went to my doctor and told her about them, the sleeping problems, that I felt I needed to exercise more and was willing to do that, and so on. That was when she put me on the Topiramate and the Zolpidem to help me get on a normal sleeping schedule and a little bit after that on the BC pills. Then she instructed me that I was to start going to bed at approximately the same time every night (within about an hour of the same time), and get up at about the same time every morning. Same all seven days of the week. Weekends included. "Sorry to put a damper on your twenty-something lifestyle." She said, with a smile, "but it's important to get this under control so we can help to get the migraines under control because this is one of your major triggers." I wholeheartedly agreed.
To be continued...bet you can't wait for the stunning conclusion.
So, with my trifecta of prevention - topiramate, trinessa, and zolpidem. I'm pretty well covered. I should also add that regular exercise of some kind is also helpful. It need not be something overly strenuous, just a walk around the block or twenty minutes on the treadmill a few times a week. That seems to make all the difference.
The last thing I guess I should mention is what I do when I actually do get one of the little nasty buggars. First, if I'm already awake and have seen it coming from a mile away, then I grab my handy "Anti-Migraine" Kit and dispense the necessary items:
10 mg Prochlorper
3 200 mg Ibuprofen
1 can diet cola (or non diet, whatever I can find, just as long as it has caffeine)
I think it's primarily the Prochlorper that does the job, but the ibuprofen take the edge off, which the prochloper has time to take effect. The coke also has the added bonus of going straight to the source and personally shrinking those blood vessels for you right off. I pretty much pound the soda. I figure the more you hit the cells with the better. After all, this is war. An I plan to win. The rest of the time I try to pretty much avoid caffeine - I just think of it as an emergency drink. I use wine for cooking, but not for drinking. Too many sulfites. That's okay, I wasn't ever a big drinker anyway.
As for those unconscious migraines...those are a tough nut to crack. I keep a small bottle next to my bed that has all the medications I would need for the middle of the night or first thing in the morning that I can just take without having to think about it. Same deal - prochlorper, IB, coke. That way, if I just wake up and know I've got a migraine I can just throw everything at it right then and with any luck, go back to sleep. I've been having a little luck with some sleep meditation recordings I found recently. Mostly it's just some deep breathing and guided visualization, but it's good for when you've woken up and need to get back to sleep again.
Wow, this turned into a really long comment. Yikes! Well, I hope you find it helpful and not completely boring, If you want to email me with questions or comments, Simon would be happy to supply an email address to you. Best of luck with your migraines. It sounds like you're doing all the right things - fight on!
Oh yeah...skip the pot...it’ll just make you hungry on top of the throbbing pain. You can get way better drugs legally.
The end.
Reid - That's interesting because I'd thought about that briefly but I'm too much of a law-abider to consider pot. Plus it seems like more of a hassle than pills, at least while it's illegal...
Leslie...WOW! Simon said she was sending you my way, but I wasn't expecting anything this in depth. Thanks so much for sharing. I will follow up via email because I had a number of questions. I don't know many people who are dealing with migraines the same sort of way that I am (with medications, not just trigger elimination), and the majority of people I know with migraines are men. (Surprising, in some ways, but 75% of the people in my building are men and the majority of people I interact with on a daily basis are men.) I feel like I'm not responding with the same effort as you, but I think I'll do that offline. Thanks again for putting in the effort to post this!
Bad wedding DJs give me a headache, too. I wonder if it's genetic or just a natural human response to horrible music played too loud.
I believe that that is a universal response to bad wedding DJs. Simon, your last phrase said it all!
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