I didn’t post yesterday; I went to bed, exhausted, before I had the chance. In the past few weeks, I’ve been forgetting the basics, more often. I will go do some task and put off eating, or taking my meds, or going to bed. I always pay for these things. I felt scattered some days, a little panicky other days. The more I talk about it, the better I am at getting back to basic self-care. Nothing is ever more important than sleep, food and meds. I even have a little graphic for it, one that I’ve used before. I’m taking this migraine (the obvious result of yesterday’s minimal food intake and terrible sleep) back to bed, now.
I have had a migraine since last night; it is responding to medication but I’m not exactly comfortable. This will be a short post.
The Bad News:
I have had a migraine since last night. Ow. Hormones suck.
I still have not quite figured out what I want to do with the three days of my week during which I am not working. Do I sub at the school I spent this summer working for? They are sort of crazy about switching my hours at the last minute, and I absorb and internalize crazy like a sponge. Do I ask to sub at another school? I interviewed for a job there, they picked someone with more experience (any experience leading a classroom is more than I have) but offered to let me sub. I haven’t decided.
I spent yesterday in my pajamas. All day. Gross, I know. But I was hyper anxious.
The Good News:
I showered, got dressed and went to work this morning. I love my job.
I have had, at most, seven migraines in the past month. This is down from three per week. I know this to be directly related to following:
The evil birth control hormones from the NuvaRing have finally left my system. (It’s an ingenious invention for anyone whose body does not completely hate birth control hormones, by the way. 100% amazing technology. Also? Evil stupid artificial hormones give me crazy migraines.)
I know that the evil birth control hormones have left my system because I am charting my fertility using the Fertility Awareness Method and the chart indicates that I ovulated in October for the first time since throwing out the NuvaRing in July. There will be a future post that goes into detail about how any (obviously hetero) couple can use FAM to either avoid or achieve pregnancy.
In case you missed it: I am ovulating again! I don’t need to be ovulating until next year, but this is still comforting. I mean, step one, right?
I’m gong to see Dr. P in New York City tomorrow! AND WE’RE GOING TO MAKE A BABY TIMELINE!!! (Sorry for the yelling, but I am really that excited.) What does “timeline” mean, exactly? Not sure. What will be on the timeline? Other than “begin trying to conceive a child,” I really have no idea. We didn’t have time to go over that last time we met. But the only thing I care about is that “begin TTC” WILL be on that timeline. Whether it will appear in date form (March, 2012) or event form (after this and that have been completed), I do not know. I do not care. Today, I just care that in 24 hours, I will be able to post it on the darn refrigerator if I want to. A BABY timeline! For MY family!
I get to see lovely New York City dweller friends after my appointment. And eat delicious food in their good company.
Taking 1mg of Klonopin 3x per day seems to be really helping my anxiety.
Today, I helped a four-year-old start making his first comic book. It. Is. Awesome. You have no idea. If he lets me, I will photograph it and show it to you when it’s done.
“I have no talent for certainty.” Jane Austen
It’s been eight days since I tapered my morning dose of Klonopin from 1.5 mg to 1 mg, and it’s been eight days since I had a good night’s sleep. I wake up soaked from night sweats with a jaw clenched so tightly it aches all day. Sometimes I sleep for twelve hours, sometimes for four. I dream about looking for some lost thing or person, but I never know exactly what I am looking for. My nights are full of problems with solutions that seem just out of reach. I just want to go back to eight hours. I want to fall asleep at 10:00 pm and wake up at 8:00 am again. I want to stop grinding my teeth so hard I’m afraid to knock out a filling.
For the first few days, I thought I just had to tough it out. But when I don’t get enough sleep, I get migraines. Understand this: I do not remember ever getting regular, consistent sleep until my early twenties. I remember watching the clock tick past ten, eleven, even midnight, as a child in grade school. (This is a classic sign of childhood anxiety, by the way.) Regular sleep was the first change that helped my anxiety, outside medication. I want my sleep back!
I’m not sure what to do, except ask my psychiatrist if this will end soon. Maybe I need a sleep aid to get me through this time. Maybe we need to make some other change to my medication. But I’m discouraged. I just didn’t see this coming. I expected harder days; I didn’t expect to feel lucky that I only had one migraine in over a week of terrible sleep. I didn’t expect to fall asleep with the kids I babysit in the middle of the day. [For the record, I wake up at the tiniest noise if I’m babysitting. R (18 months) threw one little teddy bear out of his crib, and the sound woke me up.] I didn’t expect to be baking scones at 3 am and watching Dr. Who. Everyone knows that’s a daytime activity!
In the meantime, I think today I’ll go for a very long bike ride and hope that wearing myself out physically helps. Any other suggestions?
I have “met” with Jan The Amazing Nutritionist twice now, and after both Skype video chats, the flood of hope and relief I have felt has brought tears to my eyes. These emotions come after I begin to absorb the wealth of new information each conversation affords. While a visit to a doctor, even a good doctor, finds me struggling to get a word in, visiting with Jan means answering questions about every aspect of my life, not just about her area of specialization. I have lost count of how many darn times rushed to stop a doctor with a hand on the door handle, saying “Wait! I think this other piece matters!” only to see Doc turn around, sit down again, and reconsider a medication or other piece of advice. Even the neurologist I raved about had no idea which questions to ask. The visit went well because she listened to me, but I have had to learn to make them stop and listen to my speeches about how migraines are connected to anxiety which is connected to you name it. Jan asks me questions and then tells me why she’s asking. Best example? She asked a bunch of questions about Frova, my new migraine medication. I figured she just wanted to know what else I was putting in my body in addition to the foods I reported in my food diary entries.
I felt discouraged this morning, when I woke up with pain all through the right side of my upper body, from my shoulder blades to my eyeball and realized I was going to have to take Frova if I wanted to make it to babysit this afternoon. Then came the beta blocker. Then, I forgot to take my anti-anxiety meds until 11:30 am, and only remembered because I suddenly thought “Why in the hell do I feel so jumpy?” So I added a Xanax to the mix, to make sure that I’d get dressed and leave in time to make it to my 1:00 pm gig at the big house down the block. A baby just felt so far away as I swallowed that handful of blue, red and gray pills, all with warnings on their bottles against consumption during pregnancy.
But then, I read this in an email from Jan:
- Inability to concentrate
- Weight gain or unexplained weight loss
- Slow growth in children
- Overeating and/or carbohydrate cravings
- Poor dream recall
I saw a new neurologist this morning, just two days after getting a referral. I was so impressed with the way she made time to answer my 800000000 questions, even looking up whatever she didn’t know off the top of her head. She also took my desire to get pregnant next year seriously! She told me that while I should avoid triptans (the class of meds that includes Imitrex and is usually used to treat the headache once it has started) I can use them for now; she’s even letting me try a new one, since Imitrex almost never works anymore. She also heard my request for a preventative medication that either won’t be a nightmare to get off or that I can safely take while pregnant. I have a new beta blocker, a drug that blocks adrenaline receptors, lowering blood pressure and therefore the pressure in my scalp if my blood vessels constrict during a headache. I was taking one, but it wasn’t helping. And as I said, this new one might be ok during pregnancy. We’ll talk about tfat when the time comes. I’m just glad she didn’t try to convince me to add medications–she simply believed me when I said “these don’t help” and replaced those. I even get to come back in a month or earlier (a really short period of time for a neurologist) and check in. Also, just on case you were concerned, I did pass the physical neurological exam. Which means I can stand still with eyes closed without falling over, among other things. Hope! Thank goodness for good doctors.
Later the same day…
I picked up my prescriptions, and found out the “yikes” way that Flova, my new triptan, is not available in a generic yet. So that’s expensive. But this new beta blocker is really cheap, so if it works, it’ll all balance out. Anyway, what I really wanted to mention was that the neurologist recommended some really affordable supplements to add to my ever-growing list of daily pills. So if you have migraines, you might want to ask your doctor about these two: Riboflavin (vitamin B2) and CoQ-10 (Coenzyme Q-10). Both work to prevent migraines from happening in the first place by improving “energy metabolism. Read about one riboflavin study here and a CoQ-10 study here.
In looking for research about these supplements, I also found a fantastic blog called The Migraine Chronicles that I highly recommend.
I thought that this list might be helpful. These are the things I now know cause migraines, after keeping a headache diary for the past couple of months:
- Hunger. If I don’t eat, I get a headache. I have to stop what I’m doing and eat, no matter how busy things get.
- Caffeine. One, maybe two cups of coffee a day, only in the morning or very early afternoon, and I’m fine. If I use it as a cure, it triggers a “rebound” headache.
- Sugar. Sodas, in particular. If I have something like this on an empty stomach, it’s a pretty good bet. Usually only in combination with another factor.
- Disrupted sleep pattern. It could be a too-long nap in the middle of the day (woohoo for under-employment) or staying up too late. Sleeping too much or too little. Regular sleep is the best medicine for my headaches since pain killers.
- Hormone shifts. Artificial hormones, as my other migraine post explains in detail, like the ones in The Pill. Natural estrogen spikes will do it, too, but less aggressively.
Other titles I considered for this post include:
Honey, Hand Me an Icepick
Why I Love Opiates
“It Will Prepare You For Childbirth”
Here’s what seems most bizarre during a migraine attack: no one can see that anything’s wrong. People actually smile at me, as though my eyeball were not about to pop out and liquid brain were not about to slide down my face. People try to talk to me in voices that sound huge and impossibly loud. I have to explain the situation to them even though the effort it takes to talk and open my eyes is exhausting. And when it’s finally dark and quiet, the phone always rings. The whole thing starts to feel like a mean joke.
My first migraine headache hit me at age 20, during the summer after my sophomore year at Barnard. I had a headache on the subway coming back to my dorm after my internship and thought it was the heat, so I took a nap when I got to my room. I woke up to the worst pain I had ever experienced. I thought I was dying. I thought that my brain was slowly pushing its way out of my right eye socket. I wanted to dig out that eye with my fingernails just to speed up the process.
It sounded lame even to me when I explained to the head of composition in the English department that headaches–not projectile vomit or high fevers or anything measurable– had prompted me to cancel, sometimes twice a month, the classes I was teaching. But I really was working and studying through so much of the pain.
Joan Didion describes this early stage of chronic migraine perfectly– “… I had no brain tumor, no eyestrain, no high blood pressure, nothing wrong with me at all: I simply had migraine headaches, and migraine headaches were, as everyone who did not have them knew, imaginary. I fought migraine then, ignored the warnings it sent, went to school and later to work in spite of it, sat through lectures in Middle English and presentations to advertisers with involuntary tears running down the right side of my face, threw up in washrooms, stumbled home by instinct, emptied ice trays onto my bed and tried to freeze the pain in my right temple, wished, only for a neurosurgeon who would do a lobotomy on house call, and cursed my imagination.” (“In Bed,” The White Album, 1979)
Of course, I didn’t go see a doctor, either. I just stumbled to 24 hour drugstores for Excedrin and Starbucks Double Shot iced liquid sugar/caffeine and then stumbled home, filled my pillow case with ice packs and fantasized about a massive hypodermic needle. I wanted to use this needle to go in through my temple and extract the unbearable pressure behind my eye. Excedrin rarely helped after awile. When I was in Europe or Australia, I could get an over-the-counter drug, essentially Tylenol 3 (acetaminophin and codeine), that worked every time. So I asked vacationing friends to buy the biggest boxes available and bring them back for me across the oceans. Not European chocolate or Australian wine. No, I wanted pain killers.
Once I finally had health insurance and the courage to see a neurologist, I got prescription medications, including a daily preventative called TopaMax. (By the way, you know things are bad when you are disappointed that your MRI has come back clean, your blood pressure is fine, your neurological exam goes well and your test for epilepsy has ended without inducing a seizure.) I think that because migraines are so elusive and invisible, it’s tempting to put all of one’s faith in the first person who promises help. So, I took TopaMax eagerly, despite the fact that relatively common side effects include “loss of some neurological function” and “memory loss.” It’s also a good thing I read the fine print, too, because I managed to catch this uncommon side effect: my birth control was maybe going to be less effective. So I threw it out. No way was I taking that risk. And Praise The Lord, the drugs worked! Or so I thought.
This June, our new doctor in New Haven suggested that I try a few things to get rid of even those twice monthly headaches I was still experiencing. By regulating my hormones, he suggested, we might relieve them altogether. Why not go back on birth control? I wasn’t taking the TopaMax anymore. Also, I should cut out wine, chocolate, cheese and nuts. Oh, and I should take a drug called a Beta Blocker as a preventative; it would “open up” the blood vessels in my brain.
Soon, I was in bed again two or three times a week. I had a migraine in July that lasted for over three days. The only thing that helped during that attack was a combination of acetaminophen and oxycodone. And it only helped for six hours. In desperation, I went online, clutching an ice pack to my right eye and cursing the light from the laptop screen. I went looking for something, anything that I hadn’t already heard of that could be causing this pain. I was incensed when I found this: “Certain medications can aggravate migraines, especially oral contraceptives” (mayoclinic.com). I threw out the birth control (again) and seethed with anger.
The TopaMax hadn’t taken care of the headaches. Going off the artificial hormones in my birth control had done that. Here I was, back on the same birth control and getting headaches with the same frequency. And not a single medical professional had ever even mentioned the possibility that they were connected–not my gyn, not my primary care physician, not even my neurologist. Doctors make mistakes. Fine. But I am talking about a common side effect of one of the most common prescription drugs! And I found out about it on the internet.
That was six weeks ago. Each week since then, migraines have become less frequent. Last week, I had one, and a relatively low dose of Imitrex killed it. No narcotics necessary. This week, so far, nothing. (Knock on wood.)
I still want to live headache-free. But this time, I asking for help in a new place. Today, I had my first appointment with Brooke, at New Haven Rolfing. She’s working with the connective tissues in my body to help loosen the muscles in my upper back, strengthen those in my lower back and retrain my nervous system. (It feels like a massage but with the precision of acupuncture.) My shoulders and neck always tense up and hurt like hell before, during and after a migraine, so I’m going to start with that and see if the connection goes both ways. Lose the muscle pain, lose the head pain? I think it’s worth a try. Because I want fewer prescriptions, not more. I want a solution I can use while pregnant or breast feeding.
My neck and shoulders feel like someone hit them with a baseball bat, but Brooke warned me that I might feel bruised after our session. (Rolfing does not actually give anyone bruises, by the way.) And anyway, pain like this is easy. I know where it came from and that it’s going away.
I don’t know if this is true, but someone once suggested a silver lining to all this: migraine attacks may prepare me for childbirth. It makes a certain kind of sense; at least contractions end and after the pain, you get a prize. So far, all I know is that I should take care of this body in every way I can. The price for ignoring its signals is way too high. I have never particularly felt at ease in this body; now, I think I may just grow to love it.