Making Difficult Treatment Decisions: Occipital Nerve Stimulation & Chronic Migraine

Occipital nerve stimulation for chronic migraine is a subject of a great deal of interest among the Migraine.com community. As a chronic migraineur myself who hasn’t responded to any treatment or medication in the past nine years, I wonder if it might be a good option for me. But there are so many unknowns and factors to consider that I have a hard time wrapping my mind around whether it’s something I want to explore.

Whether you’re trying to make a decision about occipital nerve stimulation or some other treatment option, I hope my exploration of my dilemma might allow us to start a dialogue on how to make these kinds of difficult treatment decisions.

About four years ago I’d tried tons of medications and other treatments and just failed a radiofrequency nerve ablation procedure that we’d hoped would help with my chronic migraines and occipital neuralgia. The doctor who performed the procedure suggested I had three options left to explore: (1) a referral to a behavioral pain management program (which I did and benefitted from immensely); (2) a referral to the Michigan Headache and Neurological Institute to see if I was a candidate for methadone (holy crap); and/or (3) try an occipital nerve stimulator.

I did some reading about methadone and quickly realized that was not going to move me in the direction I wanted to go in because it would most likely make me less functional, rather than more. So I rejected that option from the get go.

As I mentioned above, I accepted the referral to the behavioral pain management program. Although I started it reluctantly and with a bad attitude, it helped me immensely in learning how to cope with my situation. I’m eternally grateful both for the referral and the program itself and the wonderful staff there.

I have read as much as I can about the occipital nerve stimulator procedure, including medical research, blogs written by people who have had the stimulator implanted, Facebook groups and anything else I can get my hands on.

But I still can’t pull the trigger on deciding on a short list of doctors to visit for consultations. I’m just not convinced it will be worth all the expense of traveling multiple times to the doctor I choose to have the trial simulator and eventually the permanent stimulator implanted. Not to mention the pain and recovery associated with those procedures. I question whether I’d benefit to such an extent that all that would be worthwhile. I also worry about the fact that even if the stimulator helps you things can go wrong somewhat easily because of slipping of the leads, scar tissue build up and other common issues.

Maybe this means it’s not right for me right now, and that’s okay. But some part of me also feels like I’m not trying hard enough to get better if I don’t try every single option presented to me.

Have any of you dealt with this kind of difficult treatment decision? How did you make up your mind? Did you have any regrets when it was all said and done?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (12)
  • Kate
    6 years ago

    Long acting opiate pain medications such as methadone are underused in daily headache patients. It has been a lifesaver of a medication for me. I took this route prior to surgical options as its not permanent or invasive, and was recommended by two of my doctors. Unfortunately most neuros/doctors don’t condone pain meds for headache, citing the risk of rebound, or saying that they don’t work for headache.

    When you have constant moderate-severe head pain though, you don’t care. Methadone is a mis-understood medication. Yes it can be used for opiate addiction, but it is also a very good pain med for some folks. There are other options too however which a good pain management doctor can discuss with you. I think for folks who have had a daily headache for years and haven’t responded to other treatments, pain meds should be considered, as they are for non-headache pain.

    I am now pursuing a nerve stimulator trial (continuing the methadone), as it only works so well. Plus, tolerance is an issue with the pain meds. The good thing is that treatments can be combined. I almost don’t want it to work because of how much I’ve read about it being a hassle to get it to work / the nearly 100% chance of revision surgery shown in some studies. However, I know I need to know if it is an option to pursue.

    Yes there are other doctors besides Dr. Reed and his associates which do a combo occipital & supraorbital nerve stim. However, they do seem to have a lot of experience with it, or at least a lot of online presence. My doctor however isn’t able to trial that combo for me as we couldn’t get insurance to approve more than two leads for “neck” pain. Best wishes.

  • Sara
    6 years ago

    Everyone has to make their own decisions about the treatments we try. I didn’t want a nerve stimulator at first either. Then I thought about how it’s a med-free option, and I went for it. The test was a success – I took 4 Vicodin in 9 days instead of the 4 a day I sometimes take. My permanent implant is in 28 days, and I can’t wait. BTW – my doc is implanting one above my eye, so I believe others besides Dr Reed are doing it….

  • Amy
    6 years ago

    I had the neurostimulator implated, but I receive stimulation on both the occipital and supraorbital nerves. Having the stimulator has changed my life considerably for the better. I still get the daily migraines, but now I just turn my device stimulation up and I am still able to go about with my day. All of that said, this isn’t a cure, and while you no longer feel the pain of the chronic migraines – you are still dealing with all the other side effects like nausea, sensitivity to sound & smell, and get warn out easy. But if you are suffering from severe pain every day – you should definately consider the stimulator. Dr Ken Reed in Dallas performed my procedure, and I believe is the only surgeon implanting for both the occiptal and supraorbital nerves. But I could be mistaken. His website is http://www.reedmigraine.com if you are interested in learning more. Good Luck to everyone!

  • Jess08
    8 months ago

    Did you insurance help pay for the implant surgery?? How much did it cost altogether? Thx!

  • daisygirlfp
    6 years ago

    I had a successful neurostimulator trial but didn’t go ahead with permanent placement primarily because of so many attempts at treatment that had failed…I lost confidence in anything helping. I didn’t want to add to my pile of bad things (my pile of good things is very high.) Luckily my arteries are hardening and I can now tolerate the very first drug I failed, Inderal, and although I still have chronic migraine, they are much more responsive to treatment. D.H.E. inpatient and an occasional 6 month go with Sansert keeps life very doable. Holding on to hope and listening to your inner voice and having a positive outlook is great advice from other migraineurs. Homemade cookies also help.

  • Not Carly Simon
    6 years ago

    I’m always concerned about the scenario in Michael Crichton’s book The Terminal Man where a person’s neurological disorder is treated by brain implants. The device malfunctions resulting in him becoming a supercharged serial killer. The show Grimm did a similar scenario.

    I was reluctant to start propanalol because I don’t really have high blood pressure and propanalol is a hard core drug. I’m still not sure that the dizziness and constipation that I get from it are worth the relief I get.

  • lori
    6 years ago

    It took me two months to pull the trigger and agree to the occipital neuro-stimulator. Two months of weighing the pros and cons of the surgery and the impact it might have on my job. Once I did make the decision I felt a sense of hope for the first time in years. I was totally excited seeing me having a life again. Unfortunately, the insurance pulled that plug when they denied the surgery. That was such a let down as I felt like I was going backwards. I think we know what is right for us. Sometimes we do research to give us further knowledge to make a decision, but sometimes we just need to listen to our bodies to tell us what is best. If you’re not comfortable with something that is presented to you, hold off, gather information and don’t be afraid to tell a doctor that it isn’t the right thing for me at this time.

  • Amy
    6 years ago

    Please keep trying with your insurance if you think the stimulator will work for you. You can appeal their decision. And if you can provide them with enough proof to show that the stimulator will reduce your overall medical expense – it’s easier for them to approve. Good Luck!

  • robinhamm
    6 years ago

    I personally believe in listening to your inner voice. You are not failing by not trying every fad. How often do you hear of miracle cures that 10 yrs down the road and trillions of dollars spent by consumers, they finally admit it doesn’t work. This holds even more true for invasive procedures. I have determined if I am found positive, on my biopsy, for cancer (2nd time) I will not do either chemo or radiation. Good luck on your journey.

  • janenez
    6 years ago

    You are smart to take it slowly, thoughtfully and carefully . It is not a matter of “how hard you try”. Most of us have learned the hard way that “trying everything under the sun” can sometimes lead to more pain and regrets. I am sad that I didn’t take the time to really research some of the medications I tried, and now I live with impaired memory function from a drug the doc said “it can’t hurt to try”. We all know IT CAN HURT to try, so go slow, be wise and don’t let your hopes for relief give you rose colored glasses or rush your decisions. I know you know this – but I hope a migraine “newbie” can learn from my mistakes. It’s not like going to the doctor with a sore throat, finding out it is strep, taking the meds, resting and being all better in 7-10 days.

  • Kelly (Miss Migraine)
    6 years ago

    I also sometimes (maybe even often times) feel like I’m not trying hard enough to get better. But honestly, so far every single treatment I’ve tried has either stressed me out to the point of causing MORE migraines or had side effects that were simply awful. And, of course, nothing so far has given me any relief. I am still trying out different medications and treatment options because I do want to get better, but I think ultimately we have to go with our guts.

    Frankly, trying every single option out there is exhausting to even think about! It’s wonderful that there are so many varying treatment options, but I know I’ve needed to take breaks from my quest to find the one that will work, because I find the process stressful and overwhelming.

  • pkayquart
    6 years ago

    I decided to have an occipital nerve stimulator placed in 2010 after 6 years of daily headaches and chronic migraines. I have had headaches since early childhood but my migraines became very severe after getting pregnant in 2005. They never improved after I delivered my child. The stimulator has reduced the number and severity of my daily headaches but has had no impact on the chronic migraines. (I get a migraine twice about every 5 days.) I do not regret this decision. I did not have to have a temporary stimulator placed for a trial period. I had the permanent stimulator placed right away. My procedure was done at the Mayo Clinic in Rochester, MN. Initially, I had a non-rechargable battery placed that was supposed to last 5-7 years. Unfortunately, because of the amount of stimulation I use, I had to have the battery replaced after 1 year. I now have a rechargable battery. I recharge it once a week. I am glad I tried having this procedure even though it didn’t reduce the number of migraines. I am happy not to have a headache all day, every day. I have tried over 40 different migraines medications and continue to see neurologists and participate in a pain management program. I have also just begun seeing a Naturopathic Doctor and Acupuncturist. I am dedicated to improving my quality of life any way I can.

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