Christine Junge, 32, works as the associate managing editor at Harvard Health Publications. For about a year, she has had chronic daily headache. Here she describes what it's like to live with this severely debilitating condition.
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I always got more headaches than the average person — maybe three a week. Initially, they were mild and usually went away if I took an over-the-counter pain medication. But following a bad viral infection that left me sneezing and feeling run down for 12 weeks, I started to get a headache every day. At first, they started around 1 p.m. and persisted until I went to sleep. A few months later, I developed occipital neuralgia, a distinct type of headache that causes electric-shock-like chronic pain in the upper neck and behind the ears. Eventually, I also became extremely sensitive to light, at which point my doctor suspected that my condition had transformed into a chronic migraine.
Just as the pain varies, so do my moods and reactions to it. When the pain was at its worst, I felt like I was going to go crazy if I had to deal with it for one more minute. For about a month, I spent most of my days in bed crying. I worried that I would never get better. I couldn't even think straight, let alone do any of the things I loved, like gardening or hiking with my husband and our dog. I also cut my hours at work. As a result of all these changes, I completely lost my sense of self.
I'm finally starting to experience some relief, with help from a physiatrist (a physician who specializes in diagnosing and treating pain) and a neurologist. I'm on a medley of medications — gabapentin, topiramate, amitriptyline, and tizanidine (see "Preventing chronic daily headache"). All of them caused drowsiness — when I first started on them, I would sleep up to 16 hours a day. Luckily, the drowsiness subsided with time. I also got a steroid injection for the occipital neuralgia, and most recently, Botox injections (see "Botox for chronic migraine").
I'm also doing everything I can to stay physically and mentally healthy. I eat a very healthy diet and sleep at least eight hours a night. I try to do 30 minutes of aerobic activity every day, in addition to the stretching exercises recommended by my physical therapist, which mostly target my neck and shoulders.
I can also recommend a few things that really helped me cope with my situation:
Find the right doctor for you, even if it takes a few tries. When I finally found a neurologist I liked and trusted (and who returned my calls), my headaches really started to get better.
Seek out someone to talk to who has been through something similar. My husband suffered from bad back pain a few years ago, so he understands much of my fear and frustration. If no one close to you has been in a similar situation, seek a support group, either in person or online.
Figure out ways to simplify your life until you get better. Ask if you can reduce your hours or responsibilities at work for a period of time. Hire a cleaning service or have groceries delivered.
Find something to keep you occupied on bad days. I turned to podcasts and books on tape I could listen to while I lay in bed. I also got a tai chi DVD, so that I could move around a little when I got sick of lying down.
Let your emotions out once in a while. Punch a pillow or scream at the top of your lungs.
I'm still experiencing a tension-type headache almost 24 hours a day. Although unpleasant, my current situation is far more manageable than in the past. Also, now that I feel that the treatment is working — and that my doctor isn't going to give up on me — I'm able to sustain hope that someday soon, my daily headaches will be a thing of the past.