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You’re Probably Not Special

I say this with the utmost kindness — you’re probably not special. Being special in my case means I’m one of the fewer than 5% of people with intractable headaches. The odds are so in your favor that your headaches can be treated.

At the end of Nerve Stimulator Heartbreak, I wrote:

“Please don’t give up without exhausting your options. Once you think you’ve tried everything, ask about and research what other treatments or treatment combinations are available. You’ll be amazed by the possibilities.”

Headache specialist Dr. Christina Peterson highlighted that paragraph in her comments on the post and added:

“There really are so many options, and even if you think you have tried ‘everything,’ very few people really have. And we keep coming up with new stuff all the time.”

“Almost none of us are ‘curable,’ but very, very few of us are truly untreatable. Keep looking — you never know when something will work.”

I’m not defending my turf when I tell you that you aren’t special. I needed to get your attention to say this: Keep at it. Finding the right treatment for you can feel unbearably slow, but it’s nothing compared to spending your life in pain.

And think about this. Many doctors believe that the longer someone has headaches, the longer it will take to treat them. It has been likened to a car engine. At first the car starts just fine. Over time, the engine wears down and is no longer quick to turn over. Eventually the engine (or the pain control mechanism in your brain) stops turning on. When your brain’s mechanism gives out, your headaches become more frequent and less responsive to treatment.

All is not lost. Not even for me. Intractable does not mean untreatable; it means unruly or difficult (but not impossible) to treat.

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Nerve Stimulator Heartbreak

Being helpless in the face of illness is like window shopping. You’re looking through the glass at all the possibilities for an effective treatment. Every time you start to walk through the door, thinking you’ve found what will provide relief, the metal grate slams down at your feet.

You can stick your fingers through the holes, but never far enough to touch what you need. Eventually there’s nothing left to reach for.

My choice to have a nerve stimulator implanted was made in desperation. I still believe that logic and reason were present, but having truly run out of options was a tremendous influence.

Desperation also allowed me to delude myself that the trial implant was effective — even though my husband and doctors didn’t think it was. It allowed me pay the outrageous cost of the surgery. And despair let me believe that the stimulator worked.

Now I know that even right after the implant, I didn’t really believe it worked. My sanity required me to think it did. For the eight weeks following the surgery, I was in hell. My last shot at relief didn’t appear to help. The rest of my life would be marred by excruciating pain. I had reached rock bottom and stayed there for nearly a year.

What got me out of bed was crediting the stimulator with making me more functional than before the surgery. Even with the doubt that crept in, earlier this year I trusted in the stimulator enough to tell you it relieved my pain. Now I know that it never helped at all.

As with many sorts of recovery, it took utter despair to accept my illness. I would do anything to spare you the agony of that year. But no matter what I say, your pain will drive you. Whether the treatment is meds, acupuncture or nerve stimulation is irrelevant.

I cringe when I’m asked my secret for being happy even with this misery. The answer is not wisdom that I can impart over coffee. You have to live it and will only know that you have when you’ve gotten to the other side.

What a discouraging post! Know that I’m one of the “special” few whose headaches are untreatable. Please don’t give up without exhausting your options. Once you think you’ve tried everything, ask about and research what other treatments or treatment combinations are available. You’ll be amazed by the possibilities.

If you’re thinking about getting a nerve stimulator, remember that I represent only one side of the story. While most of the people I know have similar experiences, people with good stories aren’t likely to seek out someone with a bad story. Do your research though. Whether the stimulator works for you or not, you’ll be grateful knowing it was a well-thought out choice.

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Nerve Stimulation in the New York Times

Nerve stimulation, a treatment that’s tough to find information on, is the focus of It May Come as a Shock, an article from today’s New York Times. The article examines two main types of nerve stimulation for headache (occipital nerve stimulation and transcranial nerve stimulation) — what they are, the theories behind how they work and what they may mean for future treatment.

This in-depth article is the most thorough, understandable and thoughtful one I’ve read on the topic. (And I have to admit that I’m pretty excited that I was quoted in it!) While this treatment is promising for some people with intractable headache, nerve stimulation is not a panacea.

To learn about my experience with an occipital nerve stimulator, see the nerve stimulator category. Specific posts that may be helpful include:

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Stimulator Photos

stimulatorHart took photos of the stimulator before my surgery. Thought you’d be interested in seeing what it looked like. Click on the images to see a bigger photo.

If you’re thinking about getting one, don’t let these pictures dissuade you. My stimulator was considerably larger than those used now. Also, the current trend is to implant them in the lower back/upper butt. I assume time has shown this stresses the leads least.

Mayo is supposed to send my stimulator after their legal department clears it from inventory. I’ll post photos and dimensions then.

Also included for your amusement is my current haircut — my remedy for the huge uneven rectangle in my hair. The surgeon needs remedial training for his shaving skills. (Sorry, Mom, I know you hate it.)

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Back Home

Thanks for all your kind words. I feel so loved, which really helped me through the week.

I’m still shaky (literally and figuratively) — not sure why I’m trembling, but at least it doesn’t interfere with reading. I stopped taking Vicodin on Friday night because I was worried about being nauseated on the trip back to Seattle. Traveling was still uncomfortable, but we got a free first-class upgrade, which made the flight much easier.

Most of the surgical pain is gone, so Advil is serving as a decent replacement. The surgical sites are sore to the touch (of course) and I can’t turn my neck or use my right arm without pain. The biggest annoyance is that the incisions itch. It’s a sign that they are healing, but it’s awful to have an itch that can’t be scratched.

Previous surgeries were followed by terrible headaches. The theory is that my nerves weren’t happy about being touched, so they let me know it. This time I made it to yesterday afternoon without a bad headache.

I’m OK so far today and even managed to run errands for a couple hours. I’ll try to take it easy the rest of the day so I don’t wear myself out. Unfortunately, typing and using the mouse causes pain in my chest, so I can’t post much.

I’ve read a book a day for the last week and will probably keep up the pace. I stocked up on $1 clearance books at Half Price Books and have about 10 left, which will keep me occupied for a while. We’re having some meals delivered from a local service, so I won’t even have to aggravate my neck or chest by cooking.

And that’s the minutiae of my recovery. Hope you’re all doing as well as possible. Thanks again for all your support. I swear I could feel you cheering me on.