Friday, February 13, 2009


I've had a headache for almost two years. I don't talk to my friends and family about it much. It's too technical and depressing and complicated and dramatic and painful. And I'm not much of a shrink person. I just prefer to work things out on my own if I can. So, I thought I would start blogging the stories behind this. My adventures in Migraine Town. Then I decided I wanted to make it public, because reading other people's blogs about their own chronic headache issues has been very helpful. So, here is my attempt to pay it forward. I hope I help someone.

On to it.

One night in March or April of 2007, I got out of a hot shower to discover a mild flare-up of hives on my back, butt, thighs and hands. I hadn't had hives in years. I examined them worriedly for a minute, then went to bed, as there was nothing I could ever really do about them, but develop the willpower not to scratch. So, I didn't scratch, went to bed and by morning they were gone, except for one spot on my back and one under my right breast. "Huh," I thought to myself, "Hives have never done this before, maybe they are bug bites." I was unnerved to think of a spider chowing down on me repeatedly while I slept, but when I put on my bra in getting ready for work, I realized that both of the itchy, inflamed spots were directly under the band. Was I wearing dirty bras? Gross! But I had never had a pimple that hurt and itched like these did. I put a couple of bandaids on them, adjusted the bra as best as I could and went to work.

I shifted and squirmed in my seat all morning, not wanting to publicly scratch myself. By lunch, I had given up that facade of decorum and was apologizing to my coworkers for my dramatics of groaning and roaring as I alternately refused to scratch and gave into the urge by wiggling against my chair. Like I said, I had some experience with hives, so I knew never to scratch anything that itched, but this was a super itch. This was the mother of all itches. This itch was so itchy, it was stabbing. It was like a hot, itchy knife was twisting and thrusting into my torso, not enough to kill me, but more than enough to drive me crazy.

It continued for a few days. I live smack dab in the middle of SuckItUp Town, so it didn't occur to me to see a doctor. Even when I was way more tired than usual, and developed a headache that wouldn't go away, I thought it was probably anemia, since I'd had low iron before, and started taking my oft neglected multi-vitamins again. It wasn't until I showed my mom the rash that it occurred to me that it might be something worth addressing. She took one look and immediately diagnosed me with shingles, having had a run-in herself a few years before. I was aghast, but after a little googling, agreed that it was likely, and made an appointment with my doctor.

I went in and they said it was "a probable mild case of shingles". They couldn't make a definite diagnosis because the blisters had already burst and scabbed over and even partially healed. But, they gave me the anti-virals anyway.

The rash was gone after a month or so, but I still felt tired and achy, my head still hurt, and I still had moderate to severe pain on the rash itself. It was the standard shingles experience, but mild. The symptoms faded totally after a few months, except for the headaches. I had a steady supply of ibuprofen, excedrin, naproxen and acetaminophen, per recommendations by my doctor at the time, to cope with the constant throbbing in my head. They said it was perhaps some kind of post-herpatic neuralgia (a residual headache from the shingles). They said if that was the case, it would fade quickly, be patient, and take OTC painkillers at the maximum dosage until it does. It didn't. I went back and they said it was a tension headache. I needed to relax. Here's more ibuprofen.

I plugged on this way for 6 months. The headaches got worse and worse. I had no idea what a rebound headache was. My doctor evidently did not, either.

I started missing a lot of work. I made some mistakes that were critical to the security nature of my job. I was written up. I was afraid I was going to get fired and I was afraid of what was going on in my head. In September of 2007, I told my boss I needed to take a leave of absence. They were surprisingly understanding about it, and supportive. I thought that maybe if I decompressed and slept for a week or two, maybe I could shake off these headaches and start feeling normal again.

I slept. I continued to get worse. I went to a neurologist. He wasn't able to help me with my headaches at all, but he did tell me something that changed my thinking dramatically. I don't remember his exact words, so, paraphrasing: "You need to take care of yourself. Sometimes you have to push through pain, but not all the time. Sometimes you have to be easy on yourself. Work, friends, family... none of it matters if you aren't healthy."

It was then that I went on disability.

I don't remember a lot of that first year. The combination of debilitating pain and drugs have made it all foggy. After I decided that the first neurologist wasn't aggressive enough, we called every other neurologist in the bay area trying to get me in with someone. The first available was Dr. P.

His office was cluttered and dusty. His staff was inefficient, but friendly. Dr. P did seem to have a deep understanding of headaches, (at least, more than I did) and he seemed to have a path of treatment in mind, which was very reassuring to me at the time.

First, he got me off the OTC drugs, recognizing immediately that they weren't helping and were probably making it worse. He prescribed me narcotics to get me over that initial rebound headache. The drugs made me dopey and useless, but when I was awake and coherent, I was crying and in pain, so I welcomed the drug fog when it descended. After a while, (I have no idea how long it took, months?), the pain during consciousness became livable, so I went off the narcotics. But I was back where I started, with a chronic headache that was at best distracting and at worst debilitating.

Dr. P then started prescribing preventatives and abortives of all sorts. He speculated that my headache was an Atypical Migraine. None of the drugs worked. Some of them made me fat. Some made me break out. Some made my headache so much worse I thought I would die. He put me on anti-psychotics, anti-depressants, and anti-seizure meds. I'm not psychotic, depressed or having seizures, but an Atypical Migraine needs Atypical Treatment. Nothing worked. Not even a dent. Dr. P joked that he was a drug dealer. It's not really all that funny looking back.

After about a year of spending all of our money on copays, my body took a stand and informed me I was no longer allowed to put so many pharmaceuticals in it. I became impacted. No one talks about it, but it happens to a lot of people and it's awful. I won't go into detail because a person's relationship with their digestive system is a personal one.

I'd been researching more natural methods of dealing with chronic headache, and pain in general. But when I brought up things like biofeedback or magnesium to Dr. P, he would dismiss my suggestions as folklore or placebo. I assumed he was right, being the doctor and all, and backed down every time. However, I never stopped making suggestions and researching on my own, and it became increasingly obvious that he did not appreciate it and found it to be a waste of time.

At home, I was becoming increasingly obsessed with finding a name for my headache, a category I fit into. I googled all day and night. I found a lot of information about headaches and migraines that my doctor had never mentioned. I started asking more questions about all the drugs he prescribed, their side effects and how they worked. I asked him whether he had heard of new daily chronic headache or would consider giving me a recommendation for medicinal marijuana, since I had read over and over how it was extremely helpful for people in my position. He didn't miss a beat before refusing to recommend pot, and was very condescending about these "new categories" of headache.

With me refusing to be his guinea pig, Dr. P wasn't really doing anything for me anymore, except keeping me stocked in muscle relaxers. So, I started treating myself as much as western medicine allows. I've been smoking marijuana as needed and it's the ONLY thing that makes a headache bearable. It's by no means a cure, because I have the headache no matter what I do, but pot puts me in a better mood and helps postpone migraines the same way the muscle relaxers do.

So, I broke up with Dr. P over the summer. It wasn't going anywhere. I needed to move on. Haha.

I am now taking charge of my headaches. I am currently between insurance carriers, so finding a new doctor will happen soon. But this break in outside treatment has forced me to really get in touch with my triggers, and myself.

I have found that light, noise, smells and stress are triggers. I suppose that should have been fairly obvious from the get go, but I didn't really know anything about migraines before all of this started. I had noticed that these things made my headaches worse, but I didn't really understand the meaning of the word trigger. I suspect there may be food triggers, but I haven't been able to narrow anything down yet, besides caffeine, alcohol and too much sugar.

My current preventative regimen is:

-Sleep 8-10 hours a night, straight through if possible
-Avoid bad lights (bright, blinking, etc), noise (earplugs!), and stress (deep breathing and meditation help)
-Drink water, lots.
-Rest up

My current postponing/dealing regimen is:

-Ice pack on head
-Myofascial, trigger point massage
-Heating pad on back or neck
-Muscle Relaxers
-Tea (Chamomile, lemon, ginger, peppermint)
-Being quiet
-Painkillers (very rare, only when unavoidable)
-Hot shower

I've got more. Lots more. But, I've blogged myself right into a nasty headache. So now I'm done.