Some readers have asked me to share my story, so here it is. Be forewarned, it’s long!
I’m 28 and have had bad headaches for as long as I can remember. They became daily around the time I was in middle school. My doctors said it was just a headache, so I ignored the pain or treated it with Advil, Tylenol and caffeine.
I have no idea how many painkillers I took in a day, but by college, I took four at a time more than twice a day. I tried special pillows, thinking that my neck got strained in the night. I thought grinding my teeth might be the culprit, so I had a mouth guard made. I also had TMJ surgery. Nothing helped.
In the year before I graduated from college, I had an illness that couldn’t be diagnosed. I was nauseated and tired, and had dizzy spells. I had headaches at the same time, but they were still “just headaches.” The doctor eventually told me that sometimes people can’t deal with major life events, like graduating from college, so they invent illnesses to avoid dealing with the events. To him, I was one of these people.
The headaches got worse over the next few years, but were still secondary to vertigo and nausea. I was diagnosed with and treated for Meniere’s disease (a diagnosis that was later dismissed). Then I sought to treat the headaches separately. I didn’t think I could have migraines – I don’t have auras and rarely have one-sided pain – and it never occurred to me that the three symptoms could be related. I went through round after round of allergy tests, got weekly allergy shots, medicated for sinus infections and had multiple scans of my sinuses. I had surgery to correct a deviated septum and had small structures and the top of my nose shaved to reduce pressure. None of the tests showed much and the treatments didn’t help.
At the end of 2001, the headaches began to wake me up every night, about four hours after I went to sleep. This had happened before, in spells that lasted no more than a few months, but this time it scared me. I went to my GP in mid-January to see if he had any ideas about what was going on. He recommended treating the headache pain and figuring out its cause.
This started me on several years of seeing specialists and trying practically every medication and treatment available: triptans, ergots, anti-depressants, anticonvulsants, sleep aids, painkillers, Botox, massage, acupuncture, relaxation, diet modification and so on. After all the tests, the diagnoses were migraine and transformed migraine (a.k.a. chronic daily headache).
Having a name for the problems didn’t help much. I still had daily headaches and migraines at least four times a week. I kept working for a while, but wasn’t up to par. I went down to part-time and then, when we had to move for my husband’s job, quit working altogether. I spent the majority of my time in bed and wondered how long it was worth living with the pain.
I didn’t respond to any treatments that usually help those with hard-to-treat headaches, so my doctor told me about occipital nerve stimulation. This experimental device, which is for people with untreatable migraine, essentially scrambles the pain signals that are sent along the nerve responsible for communicating migraine pain. An expensive and unproven treatment, a nerve stimulator seemed like my last resort. I had it implanted in December 2003. The stimulator has definitely reduced the pain, but it hasn’t given me any pain-free days. My daily headaches now hover around 3 on the 1-10 pain scale and, on average, I’m bedridden one or two days a week. I still can’t work.
After the stimulator was in, I spent more than a year adjusting my expectations. More than having to learn to live with constant pain, I had to face – and accept – that I may never find a miracle cure. I can’t describe how horrible this was and how shattered I felt. It was ugly. I was so tired of fighting that it took me 16 months (and trouble with the stimulator) to go back to the doctor.
I’m coping pretty well now. I take Cymbalta, Wellbutrin and amitriptyline. I’m on a restricted diet to sleuth for food triggers. I do a modified form of yoga that doesn’t interfere with the stimulator. I try to relax and let go of my perfectionism. I drink a lot of decaf lattes. I have fun when I can.
I have an appointment in October with a headache specialist in the city I now live in. I may try anticonvulsants again and I’m already testing a new triptan. Most of the time I’m willing to fight, but some days I only seek escape. My days aren’t easy and I haven’t beaten this disease. At least now I have the energy, mindset and reduced pain levels to try to keep it from beating me.
What’s your story? Share it in the comments section if you’re comfortable with that, otherwise you can e-mail it to me.