Community, Coping, Treatment

The Ultimate Question

The question I get asked the most is how much my nerve stimulator helps me. This simple question is surprisingly difficult to answer. The response depends on how I feel that particular hour, what the previous day or week or month was like, how resentful I am of the little wires that restrict my movement, whether my general outlook is rosy or bleak.

I can’t give you a percentage of how much better I feel or even tell you how much my pain levels have changed. I’ll try to (like here, here and here), but the response is ever-changing and never feels accurate.

I can tell you that it does help. Probably just a little bit and it may just be a placebo, but it does help. I still have multiple days of terrible pain each month, but I have more good days than bad ones. Before the stimulator, bad days were the status quo.

My head still hurts all the time, but some days the pain doesn’t exceed a 2. Most of the time I’m at a 3 or 4. Three to five days a week the pain will grow to a five or six. Once or twice a week it will be 7+. These numbers sound scary, but compared to before I got the stimulator my pain is a piece of cake. My baseline pain was around 5 with daily fluctuations up to a 7. The pain would reach 8 and above at least five times a week.

There are other factors that may have helped. I quit a bad job and eventually replaced it with blogging, which I love. I moved to a city I love and can do almost all my errands within two miles of my house. I walk places more often than I drive and each day I leave the house, I think, “Seattle is the best city ever.” Although I prefer Arizona’s baseball team, I don’t miss all the driving I had to do in Phoenix, the heat and the plantations of big box stores every five miles. But, while I am happy now, moving away from my family and friends and figuring out how to live without work was terrible.

If I could control all these variables I would, but all the positive and negative changes seem to balance each other out. So, I have to admit that the lumpy box in my chest and the wires in my neck that restrict my movement and ability to use an electric blanket are worth it.

“How much does it help?” is actually the penultimate question; the follow-up question is usually, “Would you do it again?” I hem and haw, but my response never changes. Yes, I would do it again. I wish I knew more about what I was getting into when I got the implant, but even that knowledge probably wouldn’t keep me from getting it.

7 thoughts on “The Ultimate Question”

  1. Hi Kerrie
    I have a variety of neurological conditions and have tried all known medications to no avail and a shed load of side effects- some of which are permanent. My consultant has said the occipital nerve stimulator is the only option left. Like you I have embraced excersize due to having long periods of not physically being able to do anything. I am concerned about how this device will affect my movement. I was a pro dancer in my youth so movement is a very therapeutic part of me feeling ‘normal’. I’m intrigued that you do yoga and want to ask how your movements are restricted? I have only discovered your write ups today and will be working my way through them- I have difficulty concentrating lol!
    I have 5 different conditions and am rare according to my consultant. He has said this is not a cure but is positive that I should have some success. The NHS have currently withdrawn funding but it is likely to be re introduced. I thought I need to research this procedure to make a more informed decision. I know the guinea pig feeling. Thank you for your inspirational insights and for the work you have put into supporting fellow pain sufferers. I am in awe of all you have achieved and am feeling more confident to get the support I need and have a life back!
    Take care of you

    1. Lyndy, if the stimulator is implanted, you will have movement restrictions to keep the leads from moving. You may want to talk to your consultant about the Spring TMS, a vagal nerve stimulator, or a Cefaly. They are all external stimulators, though they all work differently. But none of them have to be implanted, so they are less expensive and don’t require any movement restrictions.

      I’m always concerned when a doctor tells someone they have no other treatment options left. There are so many treatment options for migraine that that is almost never the case. Even if you don’t want to take any more drugs, there are many non-drug possibilities, like supplements, acupuncture, massage, therapeutic yoga, and biofeedback, just to name a few.

      I wish you the best of luck, whatever you decide.

      Take care,

  2. Hi, I had the ONS for about 6 months, the first 3 of which I was in the placebo group. After I got turned on my headaches went from bad to horrible. I had new pains and weird sensations in my head. After trying everything to adjust the ONS, I gave up and had it out. Feel like a new person now. Never heard anything about electric blankets.

    I’m sorry it was unsuccessful for you, but know what a relief it can be to have it removed.

    Take care,

  3. So you said your head still hurts all the time,even tho you have the stimulator?

    Yep. But I’m in much less pain now that I used to be. There are some things I wished I’d tried before my surgery (like finding a good acupuncturist, practicing therapuetic yoga and seeing a counselor who specializes in chronic illness. In any case, I probably would have still had the surgery.


  4. cloversea please come back to our message board (webmd,migraines:Indie Cooper-guzman)we need you!!“““`=^..^=

    I read all of the new meds/procedures being tested,on the was a study being done near me.It is an implant for migraines.Do you have any more information about that?(treatment for migraine with an implantable device,being studied at Swedish Hospital,Seattle)Yeah i live very near to Seattle,just south of Puyallup.I lived in Seattle for about 10 years but moved down here.Was i correct that you also live near Seattle?

    You’re so sweet. My participation on forums is on and off, but I’ll definitely visit you all more often.

    I had no idea that Swedish was a site for studying nerve stimulators. That’s terrific. I do live in Seattle (and love it!). Maybe when you come up to see a doctor about the stimulator we can get together so you can learn more about a patient’s perspective!


  5. I really appreciate hearing your honest thoughts about the stimulator. I’m considering it, and I can’t tell you how much it helps to have an honest assessment of what life it like with it.

    I’m so glad. It’s been such a rollercoaster of emotion that I’d to help ease someone else into. Let me know if you have any other questions about the stimulator.


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