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.
Desperation makes ignoring pitfalls easy. Choosing a treatment without much clinical research to back it up or expose its shortcomings, like nerve stimulation, shouldn’t be done lightly.
The downsides that aren’t covered in the media? Just as the body tends to “outsmart” meds after a while, a nerve stimulator may stop working over time. Also, the surgery itself, or having a device implanted in your body over the long haul, may complicate or increase your pain. Notice that both of these sentences contain the word “may.” Studies on nerve stimulation for chronic headache are underway, but these are among the many questions yet to be answered.
The first of the occipital nerve stimulators are being tested now. One may prove to be better than another or all of them may need to be modified to work effectively in the future. Stimulators available five years from now will almost certainly be better equipped for this particular application. Or they may be abandoned altogether as a nonviable option.
Any doctor researching nerve stimulation, no matter how pure his or her intentions may be, would love to be the one to find The Answer for chronic headache. Of course they are excited about implanting a nerve stimulator. Not only do they have a chance to help you, they can also learn more about the device. This isn’t necessarily bad; just make sure your reason isn’t lost in their enthusiasm.
Docs aren’t all-knowing, particularly in an area that’s so new. Ask questions and make sure the answers are satisfactory. “We don’t know that yet” is an acceptable response only if you’re willing to take that risk. I was and I’m glad for that, but I do wonder if I will have regrets in the future.
News reports have lauded trigeminal, peripheral and supraorbital nerve stimulation, but there hasn’t been much coverage of occipital nerve stimulation. This isn’t an endorsement of one type over another, but I talk about ONS because that’s what I have. When I have a grasp on the other options, I’ll write about them.
The occipital nerve is targeted because it is a sort of gatekeeper that refers migraine pain to other nerves. Dr. David Dodick of the Mayo Clinic in Scottsdale explains, “The occipital and trigeminal nerves converge. These nerves connect with all of the pain-sensitive structures in the skull. [S]timulating the occipital nerve inhibits activity in the trigeminal nerve.” (This quote is from an an article that was on OUCH‘s old website, which is no longer available. Even though the article focuses on occipital stimulation for cluster headaches, the information applies to migraines.)
From what I’ve learned – and what the quote from Dr. Dodick above indicates, it appears that the occipital nerve connects to all other nerves, therefore is the widest-reaching option. I’m by no means a definitive source on this. At the very least, if you’re considering nerve stimulation, it’s a good idea to research all the possible types and work with your doctor to determine the best for your pain.
All the headache forums have been abuzz this week with questions about nerve stimulation to treat migraines. I’ve had an occipital nerve stimulator since December 2003, so I can share a patient’s perspective. I haven’t blogged about it much yet because I don’t know where to start. It’s time to get over that.
For those who aren’t familiar with this experimental treatment, the stimulator sends electrical impulses to the occipital nerve, which interrupt the pain signals sent along the nerve. For good basic information about the device and procedure, see the Neurotech Reports article on nerve stimulation. This article expands Medtronic’s press release that was issued in September 2004, when an occipital nerve stimulator study began.
I plan to break what I have to share into bite-size pieces so it’s easier to write about. Expect a lot of posts about it in the next few weeks. If you have any specific questions, e-mail me (kerrie at thedailyheadache dot com), and I’ll be sure to answer them.