One of my most distressing symptoms of CFS for me is the tension headache that never really goes away. Another friend recovering from CFS recently mentioned her similar headache, and since I’ve got one right now and I’m in a bad mood, I feel like complaining a bit about it.
Back when I was a computer engineer, I used to get regular migraine-intensity headaches about once a month or so. I would spend hours every day engrossed in a computer screen and often felt a headache coming on in the afternoon. I was so obsessed with my work that I would just push through until the pain was so debilitating that I would need strong painkillers with codeine just to get through the day. Once I got to sleep I would be OK the next day, but if the pain was too intense to get to sleep, it would often escalate until the pain was so excruciating that I would be nauseous and vomit. Vomiting with a migraine was a horrible experience but would usually give me some relief, and then eventually I’d fall asleep.
The next day, I’d feel really groggy but the pain would mostly be gone and I’d be back to work. The day after that it felt like nothing had happened and I’d be back to go go go mode. Then a few weeks later I’d do it all again.
The worst headaches were when I had no real control over my circumstances, like on a business trip to Japan or another one to Israel. I nearly threw up on the Shinkansen from Nagoya back to Tokyo after visiting World Expo and Nagoya-Jo for the weekend. Years later I spent a day holed up in a hotel in Tel Aviv with a screaming migraine after driving back from Jerusalem the day before. Fortunately my colleague could cover for me in visiting the audiologists and doctors I was there to see, and the headache was mostly gone before we flew out the next day.
I’ve also had a few killer headaches on plane flights, which make the whole travel experience a nightmare. I relied on codeine to get by; but it’s addictive and not even legal in every country I could conceivably want to travel to.
The worst headaches though were the ones I would wake up with; painkillers barely made a dent in those, and they’d wipe out a whole day. Often they appeared without any rhyme or reason, but they usually faded in intensity around sunset for some reason I’m still not clear on. By late evening I would almost be feeling like a normal human being again.
Other headaches would come on after over-exerting myself, like when I played soccer in my mid 20’s. I just could never seem to get fit enough to handle running around a field for 90 minutes and would always end up back at my girlfriend’s place that night with a screaming headache; which didn’t make her mother any easier to get on with.
When I quit computer engineering, I stopped getting the headaches and gave up my codeine habit. I promised myself I would never take anything stronger that regular aspirin, ibuprofen or paracetamol/acetaminophen again.
All that was before CFS though. A few years into the illness I started to notice a tense feeling in my head that gradually grew in intensity over time. At first it was just a curiosity, then a distraction, then it became downright painful. I could wake up with one for no apparent reason, but they would be particularly intense the morning after a night I went out dancing. I loved going dancing but eventually I gave it up because I just couldn’t deal with the head pain the next day. My body was clearly telling me something and the headaches eventually forced me to listen.
One of the worst headaches I’ve ever had occurred a few years after I came down with CFS, while I was on holidays with my sisters & their families, staying at my oldest sister’s holiday house. Family have often been a big emotional trigger for me and the house we were staying in is loaded with Christian paraphernalia. I grew up a Christian but gradually turned from Christian to Atheist in my mid 30’s; So I no longer believe in many of the biblical teachings, don’t consider Jesus the guide or savior (whatever that really means) of my life, nor do I consider the bible authoritative any more. Sometimes I feel resentful for all those churchy years where I was lied to and submitted to other people’s controlling or oppressive teachings.
Anyway, on the holiday I ended up in bed for about 3 days straight in the worst physical pain for the longest time I had ever experienced. Some holiday. Before CFS my headaches never lasted more than a day or so, so this was a new low and I only got through it by going back to sucking down codeine again; something I swore I wasn’t going to do. Fortunately the headache did subside and I’ve only needed the codeine occasionally since.
Over the last 5 months I’ve been studying Music Performance at a local college, in the hope of launching a new career as a musical comedian when I’m well enough; I’m sure all this will be hilarious when I look back in a few years time. At first I was nervous about whether I would be able to commit to full-time study; or full-time anything really. Mind you, the music department’s idea of “full time” is only 2.5 days/week so the timetable looked workable for me. And it was: I ended up only missing one class all semester due to CFS symptoms.
However I fell into the old trap of taking on too much: I was augmenting my regular day classes with a bunch of extra night classes so I could learn to play more instruments more quickly; which meant doing back-to-back 12 hour days. It was way too much: I’d be struggling to stay awake in the afternoon music theory classes, pushing through the night classes and waking up on my Fridays off with yet another killer headache.
Eventually I started to listen to what my body was saying, dropped the night classes and went home to relax at the end of each day instead. This also had the bonus of making it easier to stick to a Paleo diet since I was home by dinner time; instead of falling prey to junk food at the college cafeteria. I also cut back on the volunteer work I had been doing and took on some new coaching clients instead to earn money to pay my bills; thus lowering my financial stress and the anxiety associated with not having a decent income.
Which brings me back to stress and anxiety: Tension headaches are also associated with stress, anxiety and depression; and CFS has given me a truckload of all three. Or maybe the tension was always there in my nervous system and CFS just released it or made me aware of it.
I used to think that I was invulnerable to stress, but I was kidding myself.
Most of my life I pushed through stress and suppressed my anger; then end up feeling really anxious. Anger and anxiety are two sides of the same threat-response coin. If you look at someone who is in a fit of rage, you can see the tension in their neck muscles sticking out. Anger is a powerful force to try and keep contained. If you never let the rage out, the tension gets locked inside our body. The physiotherapist I saw years ago believed that the pain in my head was caused by referred muscular tension in my neck. That and the fact that I refused to take breaks while working on a computer. I also notice that the headache gets much worse when I spend a lot of time in front of a computer screen, like I used to in my old job.
I’ve written over a dozen songs since starting music at college, and most of them are angry songs about people who annoy me. I write lyrics using a stream-of-consciousness approach where I don’t judge what comes out; I just write whatever comes to me. I also do freestyle rhyming practise exercises so that what comes is quite lyrical. However the level of vitriol in some of my song shocks even me. I’m clearly a lot angrier than my old nice guy persona suggests. But the more bad-ass I get, the less my head seems to hurt.
Another possibility is that the headaches are related to physical withdrawal from adrenaline; which is like a drug. As my nervous system calms down and is no longer flooded with so much adrenaline and cortisol, it’s reasonable to expect a withdrawal reaction like coming off opium; of which headaches are a symptom.
Another friend of mine who recovered from CFS before I met him once complained about the headache he suffered “for a whole year!” I don’t know why he was complaining given that he had fully recovered, and I’ve had my headache for about five years. He sounded angry when he said it though, like he’s still really pissed off about the whole CFS thing. He’s another recovering nice guy with a controlling mother and a passive father like me; so I’m not surprised.
But my friend does give me hope that the headache will eventually go away; especially if I listen to my body, take breaks and rest when my head starts to hurt. And keep learning to get away from, or stand up for myself with, people and situations that piss me off.
This blog post is irritating me now, so I’m off to read a book by the beach.