Lisa’s Nerve Stimulator Experience

My friend Lisa and I met through a headache forum. At the time, she also had a nerve stimulator, so we e-mailed back and forth and finally met in person when I was in her part of the country for Thanksgiving. Her experience with the nerve stimulator has been, quite simply, hell.

Lisa has had CDH for about 20 years and, like many of us, was desperate for relief after trying a gazillion ineffective treatments. She visited a new pain specialist in early 2005 and was relieved to finally get a definitive diagnosis. He said that she had trigeminal neuralgia and that nerve stimulation, which he happened to be doing research on, was a terrific way to treat it.

There are three branches of the trigeminal nerve. The first branch is ophthalmic branch, which covers the eye, eyebrows, forehead and frontal part of the scalp. While this branch is involved in headache and migraine pain, the two other branches are lower in the face and jaw. Trigeminal neuralgia is known to cause “excruciating, lightning strikes of facial pain, typically near the nose, lips, eyes or ears.” These aren’t Lisa’s CDH symptoms.

The ophthalmic branch was targeted by Lisa’s stimulator. Her battery was in her chest and her leads snaked up her shoulder across the side of her head and to her forehead.

Here are the details from Lisa:

First Surgery
The two-week trial, where he implanted the leads in my forehead, with the wires hanging out of my head by my temples, down to my chest where I had to attach them to a receiver that I wore in a fanny pack. Two weeks later I had my…

Second Surgery
The whole system was implanted. He cut me on both sides of my head, near the temple area, and tunneled the leads up in the peripheral nerve area. He then tunneled the wires down behind my ears, cut about an inch on both sides of my neck in order to tunnel them down to my chest where he cut me open to implant the rechargeable receiver device. This lasted approximately two months before I had my…

Third Surgery
The lead on the left side of my head migrated from above my eye over toward my ear. The right lead eroded (started forcing its way out of the side of my head), so had to have the whole system removed. After recovering and waiting two or three months, I had my…

Fourth Surgery
This time he cut the right side of my head in the temple area where he tunneled both leads across my forehead, then he cut on the same side, behind my ear where he anchored the leads and tunneled them down to my chest where he cut open the same area that he cut open during the first surgery and implanted the rechargeable receiver.

Fifth Surgery
The lead on the left side of my forehead stopped working altogether, so he supposedly took the whole system out, cutting me in those same areas. There were complications during recovery (before leaving the hospital), so he had to perform my sixth surgery, that same day as my fifth surgery, and insert a tube in my chest for drainage…

Sixth Surgery
Cutting my chest open again, in the same area, and inserting a tube for drainage because I had a “bleeder.”

Seventh Surgery, Two Weeks Later
Removed the tube in my chest, and sent me to another surgeon because the area where the tube was had not started to heal from the inside out — so the other surgeon sliced my chest open in his office. The cut was about 5 inches wide and 5 inches deep. Had to pack that area with gauze for two months before the skin started to heal from the inside out.

Had MRI done in April. It showed that I still have metal in my head. Supposedly, its the anchor that was embedded down in my head to hold the leads in place. It was left in my head, without my knowledge, and I was told that the doctor would have had to cut a bigger hole in my head to remove it… So, I can leave the metal in my head or have another surgery to remove it.

Now, I’m still having daily chronic headaches. My pain level is usually no lower than a 5, but usually can deal with it unless it gets higher. The highest it has gotten lately was about an 8.

I honestly cannot tell you if the stimulator worked. I think I made myself believe that it worked great after the first implantation. After I had the second one, it did not work well at all.

I’m not posting this to scare you. Lisa’s experience is extremely uncommon, but it happened. Desperation can make you blind. It has certainly happened to me. Although I want to protect you all, I obviously don’t have that control. But I do have some suggestions, garnered from my own and Lisa’s experiences, that may help your decision-making.

  • Take someone with you to your appointments. Make sure that person will stand up for you and ask the questions that you may be too afraid to voice.
  • Know what you’re getting into and do your research about the doc. If a doctor says he or she is doing research, ask to see what’s published and who the other researchers are.
  • Take all your questions to your doc — if they aren’t answered satisfactorily, take a hard look at the doctor and the treatment before agreeing to it.
  • If something seems too good to be true, like an immediate definitive diagnosis after 20 years of pain, it probably is.
  • Most of all, remember that you only have one body. It may not be functioning how you want it to, but that may be better than unknown consequences.

Testing Music Therapy for Pain

In May, I blogged about study that indicated that listening to an hour of music a day can reduce the physical and psychological affects of chronic pain. Participants in the study who listened to music each day reported reduced pain levels up to 21%. They also had up to a 25% reduction in associated depression.

So I’ve been testing it out myself. I haven’t been strict about listening to an hour every day, but most days I know that I have music play for at least an hour and usually more. I’ve even expanded the artists I listen to. My loyalty is still primarily to Dave Matthews (acoustic with awesome guitarist Tim Reynolds, on his solo album, and solo on taped live shows) and the Dave Matthews Band, but I’ve also been listening to a new genre, Men With Husky Voices and Guitars: John Butler Trio, Jack Johnson and Ben Harper.

Back to the point. My pain levels haven’t changed overall, but I feel less pain when music is playing than when it’s off. Just as books distract me from the pain, music lets my attention go elsewhere. And I can still get other things done while I’m engaging in this sort of therapy.

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Advocates for Pain Care Funding

“There are about six times more Americans living with chronic pain than with all kinds of cancer. The NIH [National Institutes of Health] has its own Cancer Institute, which received $4.8 billion in 2005, or about 20 times more than the $229 million that went to pain research.”

This information comes from Advocates Demand Funding for Pain Care. Yes, cancer is life-threatening and pain is not (in the traditional sense), but that’s a huge disparity and way too many people are suffering from it.

Proposed legislation to increase the NIH’s pain research funding and to create six pain research centers around the country has the American Medical Association’s backing, but it the bill has faded into the background. Under the direction of the American Pain Foundation, pain patients are stirring up new interest in Congress by telling their stories.

Your Headache Stories: From Sara

Sara has made major changes in the way she lives, which has let her control her headaches instead of having them control her. Part of her success has come from a realization that the good days are sweet and you’ve got to grab them when you can.

I have had migraines since puberty, although they got worse after I had surgery when I was 20. It was to treat thoracic outlet syndrome. So, no more first rib on the left side. I’ve joked for years that I mailed the damn thing back to Adam! My chiropractor has suggested that the healing process, with my left lung now attached firmly to the second rib, has caused changes I haven’t noticed in how my body moves. I suspect she is right! Freaked me out a bit when I read Jantha’s story, since she also has thoracic outlet syndrome.

I am now 36, and over the last six years have made major changes in how I live my life. I’ve found significant pain relief through this. I have had my depression appropriately treated, and more than likely will take anti-depressants for the rest of my life. I have arthritis medication daily and Tylenol 3 for the days I really need it.

Most important seems to be the other stuff I did. I quit smoking. I don’t eat anything that has artificial colour, flavour, or preservatives of any kind. Ever. No caffeine. I only drink beer, although of course that is questionable…but we all need our treats right? I exercise 6 days a week, at home on the floor, with a book that works very well for me. And, for the last 18 months, I’ve seen a chiropractor every 2 or 3 weeks. Since I drive over an hour each way to see her, I have a 30 minute treatment. She does neural linking, and 3 months ago started doing skull adjustments on me. Sounds weird….but it all works.

Over the years I’ve gone from 3 or 4 migraines per week to 2 or 3 per month. And I am getting more control over them every week, it feels like! Today I’ve got a twinge, rather than a full blown migraine due to the pressure changes and thunderstorm here this afternoon. I figure it is a great improvement!

I also work to keep a positive attitude about all this. I remind myself…I’m not actually dying. Just realizing how sweet the pain free days really are. It might sound a bit Polly-annaish. However…you haven’t heard the swearing that can accompany that statement on a bad day 😉

You can read previous stories from readers at:

If you’d like to share your story with readers (or just with me), please e-mail me.

Comments & E-Mail

Just wanted to let you know that I won’t be able to respond to comments or e-mails until Friday. I’ll still be writing posts, but I forgot my laptop and my sister’s computer is in the un-air conditioned shop. I care about you all, but not enough to torture myself, particularly while I’m visiting my family. 😉

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I have a couple strict rules for myself: 1) Don’t go to Whole Foods, Target or Trader Joe’s after 10 a.m. on Fridays. 2) Don’t run errands if the temperature is higher than 85 degrees. Not only did I break both rules on Friday, when the high was 95 degrees, I went to Whole Foods, Target and Trader Joe’s.

I was hot, my head hurt and I was grumpy. By the time I got home, I was really, really hot; really, really annoyed; and had a really, really bad headache that was probably triggered by the heat. So what did I do? I cleaned the house and worked on my computer (in the hottest room in the house). Dumb, dumb, dumb.

Once I descended into the blissful cool of the basement, I realized just how counterproductive it was to push myself. (OK, I’ve realized this a thousand times already, but it’s a revelation every time.) I had made myself feel worse than when I started and I had no energy for the rest of the day. The sofa in our musty unfinished basement became my friend and I watched baseball on my laptop. All the while stressed because I had to pack to go to my sister’s house the next day.

There’s really no point in continuing the story. I got hot and overdid it on Friday and again on Saturday. I would have done the same on Sunday, but Hart and I hung out in my sister’s air conditioned house while she and her family were at a pool party.

My sister apologized repeatedly for not entertaining us. We were actually perfectly happy — we got to lie around and didn’t think about the housework we weren’t doing because we were three hours from home. And it reminded me again of the lesson I should have learned by now. Don’t push it. It always backfires. Always.

Serotonin Syndrome: Don’t Panic!

The FDA issued an alert yesterday about the possibility of serotonin syndrome when people on antidepressants use triptans. Yes, serotonin syndrome is potentially life-threatening. It is also rare under these conditions and is usually caused by high doses of meds.

"Serotonin syndrome can occur when medications are mixed; usually this would require a very high dose of an anti-depressant and injectable Imitrex.  Usual doses of SSRIs and oral or nasal triptans rarely cause the syndrome — there have only been a handful of cases reported," said Dr. Christina Peterson, a headache specialist and founder of HEADQuarters Migraine Management and Migraine Survival, in an e-mail.

The February/March issue of the HEADQuarters newsletter describes serotonin syndrome, what causes it, its symptoms and who is at risk for it. The newsletter also lists the medications associated with serotonin syndrome.

If you check Google News for "serotonin syndrome," you’ll find a long list of articles that will likely freak you out. Here’s the Associated Press release that most of the stories are based on. WebMD and the Mayo Clinic have stories that aren’t too alarmist. To really scare yourself, check out the FDA health advisory. It’s all the same information, it’s just presented differently.

If you think you may be at risk for serotonin syndrome, don’t just stop taking your antidepressants. Not only should you get your doctor’s input before making such a decision, you need to taper off antidepressants to avoid withdrawal symptoms (which can include nausea, dizziness, trouble sleeping, shaking or nervousness, sweating, trouble thinking and concentrating).