Thinking about trying a nerve stimulator to treat chronic migraine? Ask tons of questions beforehand to help ensure you’re making the most informed decision possible. I’ve brainstormed questions to ask your doctor, other patients, and even yourself in Nerve Stimulation: Questions to Ask, my latest post on Migraine.com.
You can learn about my experience with occipital nerve stimulation and what the research says in my posts on Migraine.com from earlier this summer. If you’re curious what I had to say when I still thought mine worked, check out the archive of my nerve simulation posts on The Daily Headache.
I’ve never felt more like a guinea pig than I did when I had my occipital nerve stimulator implanted almost 10 years ago. Read about the experience, and my thoughts about it all these years later, in Migraine & “The Box” — Feeling Like a Guinea Pig With an Occipital Nerve Stimulator on Migraine.com.
The post is in response to the Migraine & Headache Awareness Month Blog Challenge question from June 12, What situation in your migraine/headache disorders treatment has made you feel most like a guinea pig or lab rat?
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:
The neurosurgeon gave us some insight, but also made the decision more difficult. He doesn’t think that removing the leads and keeping the battery is a good idea. Because the main risk with the surgery is infection, removing them now to have another surgery down the line to either replace them or remove the battery just increases the risk of infection.
Yesterday’s headache didn’t settle down too much and it continued into today. I’ve been turning the stimulator on and off throughout the day. My headache pain is worse with it on than with it off.
Eventually I will have to decide to have the leads replaced or the device taken in out, but it’s not an urgent decision unless I have mechanical pain (the pinching pain and tenderness) even when it is off.
Today’s plan is to keep in and leave it off for a while — maybe three or six months. If I decide my pain isn’t any worse than it has been with it on, I’ll have it taken out. If I feel worse now than I did with it on, I’ll have the leads replaced. It’s a matter of waiting, which I’m not very good at.
The great news is that since the current leads are migrating and will continue to do so, I don’t have to worry about how my movement affects the leads. I can bend and stretch and carry heavy things without a second thought. I’m looking forward to a celebratory yoga class when I get home.
Thanks again for listening to my saga. I’ll start blogging about something other than myself soon, I promise!
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.