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This Time Last Year, March 25-31

Glued to the couch because the wires (aka leads) of my occipital nerve stimulator had moved is how I spent this week last year. I had to face answers to big questions I hated to ask.

Lead Migration 2006
The continuing movement of my leads and the associated pain became too much to ignore. This began my deliberations over whether to keep the stimulator or not.

On Asking for Help
I know I need help to cope with my latest nerve stimulator mess, but why can’t I bear to ask?

The Big But
The leads can’t stay where they are, so I’m forced to make a decision about the stimulator: Do I have the leads replaced or do I call it quits and have the stimulator removed?

Does it Even Work?
It’s the ultimate question and I’m not sure I want to know the answer.

A Stimulating Week
The week’s entertainment from the couch.

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This Time Last Year, March 3-10

Posts from The Daily Headache, March 3-10, 2006

Nerve Stimulator-Imposed Restrictions
According to Medtronic’s Living Well newsletter, these activities might be harmful for people with nerve stimulators: using an electric blanket, skiing, sledding, golfing, amusement park rides. Would I have still gotten the implant if I knew about all these limitiations?

Woman Heartbroken After Ending Love Affair
After years of agony, I finally say goodbye to one of the great loves of my life.

Getting the Attention We Deserve
ABC News aired a piece on new treatments for migraine, the first of a three-part series on migraine. It appears to be a good step toward reducing the stigma of migraine.

Acupuncture & Birth Control Deja Vu
Results of new studies on these migraine topics were released.

Pain Resource: Doctors for Pain
Get a glimpse of this excellent website on treating and coping with chronic pain.

The Ultimate Question
I finally try to answer the question about my occipital nerve stimulator that I’m asked the most: How much does it help? Since I had my stimulator removed in September, this post now seems quaint.

News From Annual Pain Meeting
Studies discussed at the American Academy of Pain Medicine‘s meeting included nerve stimulation and opioid levels in the blood of chronic pain patients.

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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: