Migraine Update

For those of you following the long saga that is my migraines, I thought I’d give you an update. Today I met with my new neurologist and things are looking up. (Lots of potentially boring details ahead! Feel free to skip this post if you don’t care.)

First, the clinic was good. I got checked in and then got called back by a nurse who asked if I’d turned in my paperwork, and that was it. No weight check, no blood pressure check, no med check. Everything was done by the doctor. Very impressive. My only qualm with the clinic is that the waiting room is not at all friendly for photophobic migraineurs. Lots of windows and lights, with no dark places to hide.
The neurologist was great. She is the first doctor I’ve met with who’s acknowledged that she has migraines. She was impressed that I’d brought her headache diaries from last summer and from March through today of this year as well and had looked over them before coming in to meet me. She thinks that my problem is rebounding off my medications…i.e. that I am taking too much of my abortive medication which makes my headaches more resistant to it and then creates more headaches. (That’s kindof a simple description of rebound, at least, similar to antibiotic resistance, in a way.) So she wants me to lay off my abortive of choice, which is currently eletriptan (relpax). Then she upped the dosage of my preventative medication, topamirate, but that’s a gradual increase, to ease me up to 200mg from 100mg. Hopefully that will kick in in 4-6 weeks, but it will bring me up to the maximum dose for migraine patients (still far below the dosage given to prevent seizures, but more on that some other time). In the mean time, to keep my head calm, I’m taking dexamethasone which is a steroid/anti inflammatory. It should keep the my blood vessels in my head small, as opposed to large, as they are when I have a headache. Side effects include being “wired” or “bitchy” (quotes were my docs). So the idea is that temporarily, the steroid will keep my head in check while the topamax kicks in…then the topamax will keep doing it’s job and I’ll be better off.
Then, once my migraines are down to isolated attacks (i.e. not daily), we can start isolating incidents and finding triggers, which my neurologist says she really enjoys doing. This is something that should lower the number of migraines even more and/or put them within my control. So right now, I know that I can choose to drink a coke, but I’ll get a migraine. So there’s no one saying that I can’t drink a coke, but I know I’ll pay for it. But I don’t know what many of my triggers are, so I’m looking forward to discovering them, so I don’t randomly get floored by attacks right and left. One of her guesses as to why I’ve been having a rough month of it, other than the rebound, is that I’m affected by barometric pressure, and we’ve been having a lot of storms lately.
Another problem I’ve been having is that I’ve been having trouble sleeping because of my pain levels. My solution, unendorsed until recently, is to take half a benadryl in order to kick the pain (and any nausea) and sleep very thoroughly. The neurologist wanted me to move to melatonin for regulating my sleep (especially when on the steroids) instead of benadryl, for now, so that’s another switch as well.
I have another appointment in 6 week, this time with a nurse practitioner, but someone who the doctor works with and someone who specializes in headaches as well. This is also an improvement over my last doc who said he’d see me 4 months later after changing all my meds.
Some of you may read this and think that it sounds like a lot of drugs, and I suppose it is…but I was already taking 11 pills a day. So a total of 4 more isn’t that many… especially when 8 of them will all be the same drug, just distributed throughout the day.
I’m looking forward to this new regimen and found that today was better than yesterday, so hopefully that trend will continue. Even more importantly, I finally feel like I have a medical team that is willing to work with me on my terms, so I’m ecstatic! I’ll hopefully have a good update in a few weeks.

Migraine Reflection

I was thinking about this tonight as a set of massive thunderstorms rolled through towns. What do I miss about my life pre-2006 diagnosis of migraines? And, the opposite question, what do I like more about my life?

(Neither list is ordered or complete)
First, the negatives — what do I miss about “normal life”?
1) I miss being able to watch thunder & lightning storms without thinking that the lightning is going to look like strobe lights to my brain and my brain is going to react by going into migraine mode.
2) I miss being able to drink a Coke or Mt. Dew now and then. And to not have to worry about whether or not my root beer has caffeine in it, because if it does, I’ll pay later.
3) I miss being able to hang out with friends and drink wine. Or go to happy hour and get a drink. I didn’t drink often, but this drinking water ALL the time because I have to (or else!) is frustrating. It’s not a choice any more, it’s a demand.
4) I miss being able to ride my bike when I want to. This sounds weird, but in the past two weeks I’ve only been able to commute by bike once, because I’m afraid that my dizziness is going to be to much and I’m not willing to risk it.
The positives — what I’ve learned (or has been reinforced) from my headaches:
1) My family is incredibly supportive of me. They truly want the best for me. This is the only thing they worry about in my life, which both amuses me and frightens me.
2) My boyfriend is there for me. Whether it’s driving me to urgent care, getting medicine from the store late at night, or just putting up with me, he’s done it all. Today he decided we should go walk around a forest for two hours because it’s what the Japanese do to improve their health. And, despite my misgivings, he managed to get me to walk around, in the rain and humidity, with bugs for over 1.5 hours (when HE chose to go back to the car).
3) I know what a good doctor looks like. Before my migraines I’d go to whatever doctor I could get an appointment with and I couldn’t tell you much of who was good and who was bad. Now I can. And while I’m not that great at it yet, I’m working at learning how to advocate for my own care.
4) I’ve learned that I have excellent health insurance and great hospitals and clinics. Apparently lots of clinics don’t treat someone with a migraine with dignity. I have never been treated with anything less. Similarly, my health insurance is simply amazing. I had no clue how well I was treated until this year.
5) I’ve started reading an interesting set of literature to learn about my health. This involves medical journal articles, web sites, and real paper books. Currently I am reading All in My Head by Paula Kamen. It’s an interesting mix of autobiography and history of headaches and headache treatments. Hopefully I’ll write more about my findings later this week. Through these readings I’m learning fascinating facts and tidbits about my brain and the world of headaches in general.
6) Lastly, I’ve gained a new appreciation for the non migraine days I have. If I wake up feeling good, it isn’t just a good day, it is an EXCELLENT day. All of a sudden I am productive, I can think, and I am normal. These days are fantastic. It makes me smile just thinking that tomorrow may be one of them.

Migranes: Controlling My Life?

Last weekend I had an attack of migraines. I woke up on Friday at 6:30am with a migraine. I had to lecture that day as well as finish writing a CHI madness video, finish writing a lecture, and do other work. Basically I had a full day of work. I left the house at 9:30am (after getting up at 8am, trying to sleep off the migraine) and got home at 7:45pm. In between I also went to a concert of the North Central ACDA convention because I couldn’t bear to not see the the St. Olaf Choir and the tail end of the Luther Norsemen. So I took excedrin. Because it was too late for the imitrex, the ibuprofin wasn’t working, and I didn’t have the time or energy for the urgent care.

Excedrin works not because it’s tylenol and asprin, but because it has caffeine. BUT caffeine is also a trigger. In the short term, caffeine constricts blood vessels. However because it’s a trigger this for me means that two days later, I get another migraine. So I took three excedrin to make it through Friday. Then I took a benedryl to be able to sleep that night. I knew I was taking a risk and I’d likely get another migraine on Sunday.

Sunday I woke up and felt a migraine coming on. I took one excedrin, ibuprofin, imitrex, and omdansetron. Then I went to choir. I was feeling dizzy, and had mild nausea. I also was overheated and couldn’t concentrate…basically all the neurological non-pain migraine symptoms that I get. But thankfully, not the pain. So I went home and took a one hour nap. Only it lasted for four hours, because my body was that exhausted.

My brains felt kindof like these dehydrated apple chips (even after my nap)

When I woke up I had to write a lecture, a lab, and a homework assignment. But my brains were still a little scrambled from the medicine. So it was rough. This got me thinking though. This is the first time since I’ve gotten headaches that I have been in control and have gotten out of control because of my life. That is, my medicines work well. I haven’t had an “urgent care” migraine in months. I’m doing well overall. But I had to give my lecture. I had to write my assignment. I couldn’t get out of it. I can’t turn my teaching work in late. I can’t work from home, aka take a day off and sleep my migraine off anymore. Even on the days I don’t teach, I’m frantically keeping up with my research, going to meetings, or the like. So what do I do? I take pills that give me migraines. Because I can’t think of any other alternatives.

So that Sunday I ended up calling my parents. They’re quite worried about my headaches, rightfully so. And at the end of the conversation my dad said, “Maybe you need to start thinking about different sorts of jobs.” Sure I could work in academia, but what is the potential cost. I’ve been planning this my entire life, but the more I think about it the more it scares me. Well, I guess the right way of wording it is that multiple things scare me. First and foremost, I am scared by the fact that migraines could control me to the point where they could change my career trajectory. I’m still not sure how I feel about that. It kindof feels like if I were to change it would be because of the headaches and then I’d be letting the headaches win and that would be like letting the terrorists win, which would be bad. Second, I wonder if perhaps the healthy and responsible thing to do would be to change career paths. Not drastically, but perhaps think more about industry than academia. or more about less-teaching intensive academia than I was planning.

Until this point I’ve been planning to apply for jobs at teaching colleges, colleges where the teaching load will likely be 5 or 6 courses (or more?) a year. With that type of course load, I can’t imagine trying to a) get through migraines or b) managing the rebounds that are inevitable if a) works. There are some other factors as well, but this is the sort of thing I’ve been thinking of. It’s also interesting, because I don’t really think much about my headaches as a hinderance, 99% of the time.

I was talking to a colleague a week ago and he was impressed that I managed to get so much quality work done with headaches pervading through my life. Granted most of them aren’t migraines and they are less frequent than in the past, but they are still there. This year I have my headaches under much better control than in the past (believe it or not) but part of the reason for that is topiramate. A side effect of the medicine is tingling, like pins and needles, in my feet. It comes and goes at any time, sitting, walking, whenever, but there is nothing I can do to make it go away. But still, this colleague being impressed surprised me, because I think of myself as normal. I don’t want to make adjustments or lower my standards because of my headaches.

So what will I do? I don’t know. Hopefully this spell will pass and things will continue to improve like they have been. But I think that my headaches will always be in the back of my mind, even if they aren’t pulling the puppet strings.

Migraines: Medication

Exciting! Another post about migraines. Last week I wrote about how I dealt with migraine prevention and this week, I’m writing a quick post about what I do in terms of medication. Ideally, the prevention would work so well, that I wouldn’t need any medication, but that’s not the case, so I have two types of medication that I take. I take both preventative medication and medication to stop headaches in their tracks. The idea is that by taking the preventative medication, I can eliminate most headaches and migraines from occurring, or minimize them substantially. But in all likelihood, they will still occur, at which point I will need the second type of medication to deal with the pain.

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

The topiramate is new, before that I had been taking 1 25mg amitriptyline pill a day instead. The topiramate is FDA approved to treat migraines though, which the amitriptyline isn’t. (Topiramate is an anticonvulsant, designed for epilepsy patients. Amitriptyline is an antidepressant that is so old it’s never used for that purpose any more.)The other benefit is that the amitriptyline made me incredibly tired, which the topiramate doesn’t. But the topiramate has another weird side effect which I’ll discuss with the doctor in a few weeks when I go to see him which is that I experience frequent “pins and needles” and numbness in my feet and toes. While normally you can “wake your feet up” by whacking them on things or by walking, but my feet can fall asleep WHILE I’m walking.

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!

Migraines: Prevention

I wrote several weeks ago rather vaguely about my migraines and encouraged people to ask questions. I was talking to Simon this weekend, and she said “I wanted to ask questions about your last post, but I didn’t know enough to know what to ask about migraines.” Of course, as we do, we got talking further and I was able to draw out of her more of her questions. My goal in writing that post, in part, was to draw out these questions, primarily because it’s my experience that if you don’t have migraines, you probably don’t have a clue what it’s like. Not to belittle you or anything, but the more you know what it’s like, the more you can understand me and my suffering. And to be honest, I didn’t understand it 6 years ago either, which is why I think I want more people to know about it now.

So, for this first migraine post, before we get to the nuts and bolts of the pain, let’s talk prevention. What causes ME to get migraines? (Everyone’s different.) My migraines are genetic, so that’s a huge factor. I also have a big part of them that’s hormonal and some part that’s based on barometric pressure. So basically those are outside of my control, for the most part. The only thing I can do to not mess with that balance is not add external hormones, which means no birth control pills, which is ok, in part because most doctors will never prescribe estrogen pills to me anyways because of the type of migraines I get.
But the biggest thing I can control is my diet. For a while I went on a trigger-free diet. It was horrible. I eliminated almost everything awesome from my diet. Citrus, onions, fresh bread, cheese, cured meats, chocolate, etc. There was a list of over 30 things that I couldn’t have. It made going out to eat super fun! And cooking was super fun too! But I’ve learned some things that I have adverse reactions to. Fake sugars are bad. I always forget which one causes migraines, so I avoid aspartame and sucralose like the plague. Caffeine causes migraines in the long range but can cure them in the short range, so it can go either way, but mostly I avoid it, except around deadlines or Important Things. Alcohol is a trigger that may seem difficult to avoid, but has become fairly easy. I’ve gotten used to drinking water or sprite when I go out and it’s second nature now. Plus it’s cheap. If I do decide to drink, I do so very knowingly and I’ve made a very conscious decision with my schedule in mind. Thought process: Do I have time to spend 4 hours in urgent care or the ER in two days? Yes? ok, I can have some drinks. No? ok. it’s time for water.
There are other weird things that are triggers too. I can sleep the wrong way or sleep too long. I can smell the wrong thing or spend too much time around strobe lights. (Strobe lights are really, really bad for me.) There are smaller things too, like driving down the highway with the windows down for long periods of time. The throbbing starts to become throbbing in my head instead of just in the air in the car. Spending too much time at a computer (especially without my glasses) can cause me trouble as well.
Ben would also say that shopping on Saturdays around noon is also a trigger, but I’d disagree. But he’s probably not that far off in that missing meals does throw my body for a loop.
If you’re further interested in this subject and the idea of triggers, I’d encourage you to read Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain. The books is by David Buchholz and focuses on eliminating triggers (including medications) from your daily life. It was my first attempt at getting my migraines and other headaches under control. I know other people for whom this book has radically altered their life and has helped them eliminate all migraines. So it’s definitely worth reading. Whether or not it can eliminate the pain altogether is a different issue.
That’s it for the migraine stuff for this week. I’m trying to be informative but not bring you all down while I’m at it 🙂 More pictures and fun tomorrow!

Migraines

I’ve been meaning to write something about my headaches & migraines on here for a while, then last night, when reading an old New Yorker, I came across this article in Talk of the Town. It’s a brief (1 page) story about Cindy McCain’s struggle with migraines and rings quite true for me. So true that I figured it covers almost everything I was going to write about, so we’ll start from there. READ ME.

McCain has decided to become an advocate for the disorder, which, in her view, is a disability. “I’ve missed part of my life. I’ve missed my children in many ways,” she said. “I’ve made every important event, but there’re times I’ve been throwing up out the car window.”
I haven’t thrown up in a while, thanks in great part to the wonder drug ondansetron (zofran), an anti nausea medication that makes my nausea manageable. I used to be skeptical of choir members who were frequently submitting excuses for absenses because they had migraines, but that was before I got them. Now, I understand. If they come early in the day, they usually start mildly. Today I took some excedrin (I was too late to start with sumatriptan) and am working from home. By working from home, I ensure that if I need to sleep it off later in the day, or need an extended break from a computer or words, I can take one. I also don’t have to worry about nausea as much as in the office. In contrast, though, if I decide I need to go to urgent care, it will take me 45 minutes to get there instead of 5. Recently though, I’ve been much better able to manage my headaches, a fact I am quite proud of. If a headache/migraine strikes later in the day, it’s usually too late to take anything that will help. Usually I just have to try my best to sleep it off.
I, too, have triggers, some of which I understand better than others. Caffeine, alcohol, and aspartame are some of my strong dietary triggers. I also think that I have some triggers outside my control, including hormonal triggers and changes in barometric pressure. Like McCain, I have some olfactory triggers that I don’t understand as well. Strobe lights and loud sounds (including driving for extended periods of time with rolled down windows) seem to be triggers as well.
To keep it in check I take 10 pills a day, mostly supplements (lots of riboflavin and magnesium gluconate) and an anti-seizure medication that has been FDA approved to reduce migraines. I also try to minimize triggers from my environment. Right now I’m also lucky in that, for the most part, I can work from home when I need to. So while I feel that I occasionally miss days of my life, at least I can miss them. Now I just need to work to get them even more under control so that by the time I’m out of grad school my days missed goes from 5% to .5%, so that I don’t have to miss days teaching.
So that’s a snippet of my life with headaches. There are some more aspects of this as well, but I won’t go into that now. Please feel free to ask questions or share comments. I realize that this is an issue that isn’t well understood and I’m obviously in a unique position to talk about it. (Reminder that I’m not a medical person, so I’m just sharing my personal experience, not any advice for others.)
State Fair Art is coming up next (should be within a day or so…have to finish writing about butter heads.)