I’ve posted a lot on this blog about my struggles with migraine headaches. But it occurred to me recently that I haven’t really shared the experience of finding solutions to this very big problem that has interfered significantly with my life and my work.
I thought I’d post about my current regimen (and its pros/cons) and the process that led me to this point, including a discussion about what I have learned from this experience.
*Disclaimer: Before we go any further, I should say that this post should not be construed as medical or prescriptive advice. This is my journey and this is the process that works for me. If you have migraines, I encourage you to seek out the advice of a trusted medical professional. Preferably one who specializes in headaches.
I’ve always been prone to tension headaches – if you haven’t guessed it by now, I’m as Type A as they come. And my stress and anxiety tend to go straight to my head…literally. At one point as a hypochondriac teenager, I was convinced I had a brain tumor. (I also have a flair for the dramatic!)
Nursing school seemed to be the tipping point from tension headaches to full blown migraines. Migraine headaches run in our family and there is pretty strong evidence about a hereditary link. I don’t know if the stress of being a nursing student just lowered my threshold for headache triggers or if something else changed, but I started to experience throbbing, nausea-inducing pain behind my right eye. I was sensitive to light and noise.
I found a neurologist, who put me on Topamax (an anti-seizure med) for migraine prophylaxis and Midrin to treat breakthrough headaches. I didn’t like the Midrin because it seemed to make me feel nauseous and give me abdominal pain.
The Topamax worked for a while and I started using over-the-counter migraine medications for breakthrough pain. I learned my triggers – red wine/dark liquors (sad face), emotional stress, lack of sleep, certain points in my menstrual cycle – and tried to avoid them (when they could be avoided).
Then I started my first nursing job. On night shift. And all hell broke loose. The disturbed sleep cycles of working night shift, coupled with a lot of cognitive dissonance regarding my job, led to an excruciating cycle that lasted 10 days with no relief. I called out from work multiple times and had a miserable trip to the ER, featuring a shot of Dilaudid that made me more nauseous. I finally found a neuro NP who changed my prophylaxis from Topamax to zonesamide (another anti-epileptic) and prescribed Maxalt for breakthroughs. To break the current cycle, she also went hardcore: self-injections of DHE and Toradol three times a day for three days, Phenergan to prevent nausea from the DHE, and Thorazine every night to force me to sleep. By Day 2, I could do more than lie still and by day 3, the cycle was broken.
By then I had lost my job and I decided that night shift nursing wasn’t for me. I found a position in community health with regular hours and was much more stable. The emotional and mental stress of my job plus school contributed to an occasional headache, but overall I was doing better. By this time, we had moved again and I found a new neurologist. He changed my prophylaxis from zonesamide to propranolol, a beta-blocker.
For over a year, the propranolol has worked wonders. I’ve had maybe four or five migraines in that time span (which is a vast improvement from 1-2 a week). But returning to night shift has meant the return of a major trigger – disturbed sleep patterns. So my new doctor has switched some things around in the hope of avoiding/preventing exhaustion-induced headaches. One of the keys has been helping me sleep on my days/nights off – I have had a terrible time with insomnia after a stretch of shifts. For the most part, this new program has worked wonders. My current regimen:
Prophylaxis: Propranolol. Pros: Has done a great job of preventing headaches. Cons: A little bit of exercise intolerance at the beginning, as my heart adjusted to its new baseline rate. But I’ve adapted just fine.
Breakthrough: Maxalt. (I use the sublingual melt tablets so I don’t have to swallow a pill when I’m nauseous). Pros: This works best when I’m just beginning to feel the onset of a headache, which is usually signalled by a tingling sensation above my right eye. Cons: The med makes me almost as nauseous as the headache – granted, the nausea lasts only about an hour and then everything is better, but that hour is precious, especially at work. It also gives me a very stiff neck on the right side – vasospasms can be a common side effect.
Breakthrough (for a full-blown migraine): Fiorcet (butalbital/acetaminophen/caffeine). Pros: This is my “rescue med” – it does an excellent job of knocking out a headache that is in full swing. Of course it also knocks me out, thanks to the barbiturate that is a main ingredient (despite the caffeine it also contains). But I don’t mind sleeping it off if it means waking up as a normal person again. Cons: Obviously the drowsiness means I can’t take it at work. It can also cause rebound headaches if you take it too often. So this is my option of last resort.
Sleep: Limbitrol (librium/amitriptyline). Pros: The combined anti-anxiety and anti-depressive meds in this pill have done wonders for my psyche. I’ve been on Limbitrol for about 6 weeks and I am sleeping like a baby on my nights off. Plus I am just coping better with my stressors. Cons: Figuring out how much to take. One tab is enough to help me nap comfortably before a shift and not wake up groggy. Two and I literally don’t move for 10 hours and wake up with a dry mouth and sense of being hungover. I’m trying out 1.5 at night to see if it a better balance. Plus, it has made my appetite quite insatiable – I feel like I could eat a horse. Which is a problem because I already struggle with my weight. This one is a work in progress.
Besides meds, I know that I feel better with exercise. It’s been hard to figure out a reliable fitness plan with such an unpredictable work schedule, but I’m working on it. I bet I burn at least 500 calories a shift with all the walking I do – in my first 6 months on the floor, I lost 30 pounds! So I know as long as I can watch the snacking at home, I should be okay. And all that movement at work has actually been good for preventing headaches…I’ve only had one migraine at work, and it started at home when I slept terribly before a shift.
So what have I learned from this experience?
1) Find a provider you can trust. I did a lot of research before deciding on my current doctor. I wanted someone who specialized in headaches. It’s a whole different ballgame than other neurological problems.
2) Figure out your triggers. There are some foods/drinks/habits that are well-known migraine triggers, but everyone is different. Keeping a headache diary, especially if you have frequent migraines, is an important part of diagnosing and treating the problem. HOWEVER…. Knowing your triggers is only half the battle. If you know your triggers but don’t do anything about them, you’re no better off. This is a lesson I’m still working on. For example, I know lack of sleep is a huge trigger for me. But I also get stressed out after I work a stretch and haven’t read emails/paid bills/done laundry in four days. I want to “catch up” before I sleep. S has had to remind me that I’m no good to anyone if I don’t rest.
3) Do your homework. I highly recommend The Migraine Brain, but there are many helpful books out there about understanding and managing headaches. There is also an excellent podcast on The People’s Pharmacy about headaches and treatment options.
4) Figure out what kind of headache you have. Migraine is not the only diagnosis out there. Knowing what you have will help determine your treatment options.
5) Surround yourself with support. My husband has been almost saintlike in his patience with me during my more debilitating moments. I have been frank with my co-workers about my headaches, and they have looked out for me when I am having a stressful night. I have tried really hard to be proactive about prevention and treatment, to avoid letting them get out of control. This has led to me calling out only once in the past 9 months due to migraine. I’d say that’s a pretty good track record.
So that’s where I am today. Still trying to figure out the right combination of meds and lifestyle choices, but also realizing that the “right” combination may change over time. The important part is that I’m paying attention to what my body tells me.