Migraine and “The Box”: Feeling Like a Guinea Pig With an Occipital Nerve Stimulator

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I had an occipital nerve stimulator implanted 10 years ago this coming December. Considering that the procedure still hasn’t been approved by the FDA, there’s no doubt I was an early human guinea pig.

Migrane Awareness MonthNerve stimulation for migraine was relatively new in 2003 and promising in the way only something that has so many unknowns can be. Think about how someone you have a crush on appears to be your perfect match. Not having solid information about the person, your mind fills in the gaps with ideal details without knowing the truth. If you ever date that person, you discover whether or not you are compatible. Much the same thing happens with new medical treatments.

In retrospect, I’m surprised that my doctor thought I was a good candidate for the procedure at that time. Although I’ve had migraine attacks all my life and chronic daily headache since I was 11, I had been diagnosed with chronic migraine less than two years before getting the implant. I had tried medications of various types, but still no more than a dozen different drugs. I’d never had occipital nerve blocks, which some doctors use as a predictor for whether or not an occipital nerve stimulator will work.

Reader favoriteI had a trial stimulator for about a week in October 2003 and both my doctors and husband were surprised I thought it was effective. I can’t remember what percentage I said I thought it helped, but it was above 50%. I desperately wanted to believe it helped and made excuses for every migraine I had in that week (irritation from surgery, weather, etc.). The benefit the trial stimulator provided was no more than 10%, if even that much. Still, I wanted to believe and my doctors were willing to do the surgery.

The six weeks following the surgery for the permanent implant were filled with some of the worst migraine attacks of my life. My doctors hypothesized that the surgery irritated my nerves and things would settle down in time. Even when the surgery pain and increased migraines subsided, relief never came.

I spent the 2004 hoping the implant had worked. I pushed myself to exercise, work, and socialize more than I had before, equating activity with evidence that the nerve stimulator was helping. I also had the most severe depression I’d ever had. I thought the nerve stimulator was my last hope for a normal life and, despite trying to trick myself, at some level I knew it hadn’t worked. I was devastated.

In the spring of 2006, the leads of my stimulator slipped out of place. It was likely my fault — yoga is one of the activities that I was told could cause the leads to slip, but yoga was my emotional saving grace so I chose to do it anyway. It didn’t really matter because I was pretty sure the stimulator wasn’t working. I turned it off in April 2006 and had it removed that September.

Having the stimulator removed was a surprisingly difficult decision. Despite not believing it was effective and knowing intellectually it was not my last hope, I didn’t want to take away any treatment options. But I also wanted to do yoga without causing any more damage or risking worsening my migraines. Once the stimulator was removed, I had no second thoughts about the removal, only about having it implanted in the first place.

I’ve since concluded that the nerve stimulator provided me with no relief. None. Fortunately, it didn’t cause any long-term damage either.

I share my story knowing that the technology and procedures have changed and improved in the last decade. Take whatever I say with as many grains of salt as you need to. If you’re considering a nerve stimulator for yourself, please also keep these factors in mind:

  • Even if it seems nerve stimulation is your last hope, it probably is not. (I ultimately found relief from an antihistamine developed decades ago. It was an established migraine preventive when I got my stimulator, but had not been recommended to me).
  • Nerve stimulation is not perfect and does not help everyone.
  • Some people’s relief from the device diminishes over time.
  • If the leads slip and need surgical revision, the stimulator’s efficacy may be reduced.
  • The device can limit your mobility and activities.
  • The surgery and implant itself are not without risk.

I’m not trying to warn you away from the procedure, but to encourage you to think about all aspects — good and bad — about nerve stimulation. There is so much hype surrounding nerve stimulation, which is often hailed as a miracle cure. It is not, nor is it without side effects (though they’re called complications because it is a medical device that requires surgery rather than a drug). I made an ill-considered decision out of desperation. I hope that by sharing my
experience, others can make such decisions with more complete, accurate information.

Keep reading Migraine.com for a follow-up post on research findings about nerve stimulation and suggestions for how to decide if it is right for you.

This post is in response to Migraine and Headache Awareness Month Blog Challenge #12, “The Box: You are the experiment: What situation in your migraine/headache disorders treatment has made you feel most like a guinea pig or lab rat?

Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

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 (38)
  • Jules2dl
    5 years ago

    I was in the clinical study here in Chicago in 2006. They were just doing the occipital nerve then, and like you, I have trigeminal nerve involvement as well.
    I was asleep for much of the surgery, but awake for part, so that I could tell the surgeon where I felt the stim. Unfortunately for the surgeon, I also felt a warm flow of something spread over my back and heard him hiss “damn! I just nicked the occipital artery! Suction!Suction!”. Then I was out again.
    Later that evening, I passed out, most likely from blood loss, and fell flat on my back. I found out later that this had dislodged the leads, and needed another surgery to reposition them. When I told the surgeon what I’d heard during surgery, he kind of shuffled his feet like a little kid and grinned at me. “So you heard that huh?”.
    The stimulator helped to prevent some migraines, but once a migraine started, the stimulation did not help. In fact, it actually agitated me to the point that I’d turn it off when I had a full-blown migraine.
    Two years into the study, I was meeting with the guy who checked out the device every few months or so. I told him I was thinking about having it explanted. He told me that it seemed as if many of the participants were saying that the device no longer seemed to help after the first year. Many of them were choosing to have their stimulators explanted.
    I don’t regret having tried the stimulator, although I do wish there had been a trigeminal part to go along with the occipital one. I don’t quite know if I would choose now to go that route again. Omg, did I even say that? :-/

  • laalaa81
    5 years ago

    Thanks for the info Kerrie. I’m waiting on a surgical consult for the neuro simulators in the next few weeks. I’ve tried abortive’s, preventatives, epilepsy meds, botox, DHE…the list goes on and on but nothing has helped in the 3 1/2 years since my migraine switched from episodic to chronic. With 24/7 pain never lower than a 7 I’m hoping this will be my salvation.

  • JennMilwaui3
    5 years ago

    I can relate to your lifelong search forrelief. I am in the first month of using Cefaly, an externally applied electrode placed above and centered over the center of your eyebrows. So far, I think I’m getting less frequent migraines, but I cannot say using Cefaly is easy–the device runs a 20-minute cycle of inreasingly intensity used daily–and a few times I would rate my pain level at 7-8. But when the treatment is over, there certainly is relief! Hence, I’m questionning just how efficacious this treatment is, but I feel as though I might miss a “cure”, something I’ve almost given up on. As Cefaly costs about $350for the unit, spare electrodes, shipping and handling from the manufacturer in Belgium. My sumatriptan injections run $50 each so times 12-14 per month, financially there was little to dissuade me not to try it. My neurologist agrees with the product claims of no side effects, this based on long-term usage in Europe and Australia.
    I’ll let you know after two months use, the point where the treatment usually reaches a plateau; following that, intermittent use is all that is suggested. Cross your fingers for me!

  • Tracy Grant
    5 years ago

    How did anti histamines help your migraines?

  • Kerrie Smyres moderator author
    5 years ago

    Histamine is a migraine trigger in some people, even those who don’t have allergy symptoms. Some other possible reasons cyproheptadine (the drug I take) might work is that it’s a serotonin antagonist and may also be a calcium channel blocker. Not sure why, but people don’t report the same benefits with newer antihistamines (like Claritin, Zyrtec and Allegra).

  • Tom 525
    5 years ago

    I had my first migraine in 1981. By 1996, I had a headache 24/7, and had to take a medical retirement. In 2006, I had 2 neurostimulators implanted with leads to each temple and the right occipital nerve. The constant headaches stopped immediately. I still get occasional migraines, but I can turn up the stimulators and get rid of headache part.
    I had inpatient surgery, with hypnotic anesthesia and no pain, except minor post surgical pain. I drove myself home the next day. In September, 2011, I had both generators replaced because the batteries were wearing out. In December, 2011, EMTs fried one of my brand new stimulators with an external pacemaker. (I had a severe attack of bradycardia – pulse rate 12.)
    In summary, the stimulators GAVE ME BACK MY LIFE! I have and will continue to strongly recommend them as a last resort treatment.

  • Amy Baker
    5 years ago

    Karrie, I am sorry your implant did not work for you. I have had my implant since 2007. My leads were sewn into place on my nerves. Making it impossible to have them move. It also makes it impossible to have it ever removed. I do not regret my decision to do the surgery it has helped me with my chronic daily headaches but you are correct it really doesn’t help much with migraines at least for me. Before I got my stimulator I have had all the drugs on the market and some that have never been used for migraines. I also had several rhizotomys and nerve blocks that helped me. I hope that with advances in medicine that maybe this stimulator will help with migraines in time. I also hope that you can continue to find relief with your new drug. I just hope that all that read this article will research the options and listen to the doctors. There is really no quick cure for chronic migraines…much to my regret.

  • marlenerossman
    6 years ago

    Kerrie, do you take the Cyproheptadine at night?

  • Kerrie Smyres moderator author
    5 years ago

    I take it at 6:30 each evening. It took a few weeks for it to not make me sleepy in the evening, but this way I don’t have to worry about being groggy in the morning.

  • marlenerossman
    6 years ago

    Kerrie, do you take the Cyproheptadine as a divided dose or all 12 mgs at the same time. I am on 4mgs and I don’t think it’s working yet. Also, PLEASE tell us how long it took to kick in. Thank you.

  • marlenerossman
    6 years ago

    Kerrie, do you take the Cyproheptadine at night or in the AM.
    I am trying to figure out how it can work best. Thank you!

  • Kerrie Smyres moderator author
    6 years ago

    I take it all at once. I noticed an improvement within a week at 4 mg and then each time I increased the dose, but it can take a few months for a preventive to kick in. Best of luck!

  • chargedmomma
    6 years ago

    Kerrie …
    I am so sorry your implant did not work for you. I guess I was very fortunate. I too am one of the first patients implanted and was a part of a study that made the medical journals. At that point, I had tried everything though … Mayo Clinic was not even offering it yet.
    I suffer from a 24/7 migraine type headache which was triggered by a motor vehicle accident. I had tried chiropractors, numerous medications, acupressure, biofeedback, occipital nerve injections,etc., when I was introduced to the neurostimulators. It gave me such relief, that I went on and received two more, one for each temple and one for the base of my neck. Pain level went from 7-8-9 to a 2-3-4 allowing me to re-enter society AND go back to college and complete my degree.
    Yes, the surgery was uncomfortable and not I was not out, but was given relaxants.
    The help I received from the implant(s) far outweighed the pain of any surgery related. Yes, my leads have popped and I’ve had revision surgeries, have had infections from the surgery, but honestly in the end, I can say it was worth it.
    There is another treatment I became aware of that could possibly help people with migraines/pain issues and that is called a “beta reset”. Google it … the company is based out of Colorado. I would try it before surgery … it also brought complete relief for 6 months of my life … able to turn off all three neurostimulators.

  • Kerrie Smyres moderator author
    6 years ago

    Thanks for your kind words. I’m so happy to hear that your experience with nerve stimulation has been successful. I totally understand that the revisions and infections were manageable because the stimulators worked over all.

    And thanks for telling me about the beta reset. I’ll definitely look into it.

  • marlenerossman
    6 years ago

    Kerrie, what dose of Cyproheptadine did you take? Can you give us some details? Thank you.

  • Kerrie Smyres moderator author
    6 years ago

    I’m on 12 mg a day. The dose starts at 4 mg and can go up to 36. Any more than 12 triggers a severe migraine for me!

  • Janet
    6 years ago

    Kerrie

    Thank you for sharing yet more educating feedback. I, too, considered the occipital nerve block stimulator implant..but the friend who came along with me was so freaked out by the entire procedure and lack of positive information, she came home with me and indicated to my husband that it would be horrible to try. Long story short I didn’t because I get any and all side effects known to,any med.

    Periactin….how successful,is it for you?? I’m headed back to migraine abortive overuse because chronic migraines are just that, chronic, I thought I was getting a break in the cycle…but the longest I’ve gone without an abortive is less than 48 hours. I’m off any and all preventatives since DHE in march 2013.. When that failed also.

    Still watching, reading and seeking….and always praying.

    Blessings
    Janet Jones

  • Traci
    5 years ago

    Janet, I have the same problem with side effects to meds, that is why I tried the nerve stimulator. It didn’t work for me. I also have had occipital nerve excision. It helped in that area but still very bad pain in the rest of my head and face. Have you found any solutions yet?

  • Kerrie Smyres moderator author
    6 years ago

    You’re welcome. I’m glad my experience was helpful for you. Interesting that your experience with drug side effects led you to decide not to get the nerve stimulator. Many people cite that as a reason for getting one — thus letting them avoid more medication. Did your experience with meds make you fear that you would have a bad reaction to the stimulator?

    12 mg of cyproheptadine daily brings my pain down about 2.5 notches on a 1-10 pain scale. The first time I took it, it made me jittery — just the opposite of the expected reaction to it. I tried it again a few years later and had the more typical side effects of drowsiness and weight gain (13 pounds). I take it at 6 p.m., so I’m a bit sleepier in the evening than I would be otherwise, but it doesn’t make me tired the next day.

  • Kim Leonoudakis
    6 years ago

    I recently did the trial neurostimulator at the Reed Migraine Center in Dallas TX. It worked for me and I plan on getting the permanent implant. I believe it is different now since yours was 10 years ago. I can see how you would feel like a guinea pig. I’m not sure where you leads were placed exactly but check out this procedure. I’d be interested to know what you think and if it seems different to you.

  • Kerrie Smyres moderator author
    5 years ago

    Thanks for letting me know, Traci. I’m sure the procedure has changed a lot in 10 years — at least I hope it has!

  • Traci
    5 years ago

    I had my trial at Reed also. I so wish it had worked for me. Kerrie Smyres, they do the four leads at Reed like you mentioned that you wish you could have tried.

  • Kerrie Smyres moderator author
    6 years ago

    How exciting that the trial worked for you! Best wishes on your permanent implant.

    Not sure what placement Reed uses, but many surgeons now put leads at the base of the skull (occipital region) and in the forhead (for the trigeminal or peripheral nerves). My leads were only at the back of my skull and I’ve since discovered a lot of trigeminal involvement with my migraines. Maybe that would have been a better option for me.

  • Melissa Bartosh-Thomas
    6 years ago

    Thank you for sharing your experience. I too had the occipital nerve stimulator implanted and later taken out. I was in the initial study. I was never told how brutal and incredibly painful the surgery would be. I do hope they’ve improved the procedure by now, but for me I had to be awake with no pain meds… talk about a torture chamber. The recovery for me wasn’t easy either. And to top the whole miserable experience off, it failed to work at all. It limited my activities and really just added to my feeling of hopelessness at the time. For anyone embarking on the decision as to whether or not to go through with this procedure, I’d be sure to ask a ton of questions.

  • Kerrie Smyres moderator author
    6 years ago

    Thanks for sharing your story. I absolutely identify with the limited activities adding to your sense of hopelessness. I still shudder to think how depressed I was in the year following the surgery. And I completely agree that people should ask a ton of questions beforehand.

  • Julie
    6 years ago

    Thank you for sharing your story Kerrie. What a nightmare this must have been for you! I’m sorry you had to go through such an experience. I was thinking about that procedure but I think, and I know your not discouraging people just giving your view and experience, but I think it’s a no-go for me. Take care and I hope you have a low pain day. Blessings. Julie

  • Kerrie Smyres moderator author
    6 years ago

    Thanks for your kind words, Julie. You have to follow your gut on a decision as major as this, which it sounds like you’re doing. Take care of yourself.

  • Kerrie Smyres moderator author
    6 years ago

    Thanks for the kind comments. The antihistamine is called cyproheptadine (brand name Periactin). It is considered very mild and it is commonly used to treat migraine in kids. The primary side effects are drowsiness and weight gain.

  • Laura
    6 years ago

    Gosh, Kerrie ~ sounds like it was a nightmare. So sorry you went through all of that hell. I second the request as to what antihistamine you take that helped, as I just read an article the other day about histamine and migraine. Please share! 🙂 Best wishes to you.

  • Kerrie Smyres moderator author
    6 years ago

    Just in case you haven’t seen, I’m taking 12 mg of cyproheptadine. It has brought my pain level down 2.5 notches on a 1-10 pain scale.

  • taralane
    6 years ago

    Kerrie – Thanks for your article. I have been told by my HMO’s neuro & pain docs that this is the only thing that will help my chronic migraines. I have tried many more meds than you had when your stim was implanted, but the nerve locks I have had were all dismal failures with me. My instinct has been to say “no” to this procedure, and your input helps me confirm my suspicions about it. Talk about a guinea pig procedure. That is what I felt I was being directed into – a cage – when I was told it was the only thing that would work for me. There is never only “one” thing, even if it seems that way.

  • Kerrie Smyres moderator author
    6 years ago

    I’m glad my story helped you. Definitely trust your instinct for any treatment… and distrust anyone who tells you that there’s only one treatment that will help you. While it is frustrating that there are no specific migraine preventives, the upside is that there are many possibilities available. Persistence is the key.

  • marlenerossman
    6 years ago

    Kerrie, can you tell us the name of the antihistamine? Maybe it will work for other sufferers.

  • Kerrie Smyres moderator author
    6 years ago

    Cyproheptadine (brand name Periactin). It is very mild and has long been used as a preventive for children. The main side effects are weight gain (I’ve gained 13 pounds, a friend gained 25) and drowsiness.

  • 6 years ago

    Thanks for sharing your experience Kerrie. It really is helpful to hear the details of an individual’s experience – good or bad. Doctor’s are all too willing to gloss over the negatives of some of these treatment modalities, mostly because they want to help us too, but I think it says something telling about our culture’s sometimes misplaced belief in the power of the latest technology to cure all that ails us. It’s rather telling that the ancient practice of yoga proved to be more beneficial to you than the nerve stimulator in the end.

  • Kerrie Smyres moderator author
    6 years ago

    Malina, I take 12 mg of cyproheptadine daily as a migraine preventive. It has brought my pain level down 2.5 points on a 1-10 scale. The highest dose is 36 mg, but any more than 12 triggers a severe migraine for me. I’m also on a low histamine diet, which seems to be helping.

    Not sure if the depression is separate from migraine or not — they are so intertwined and migraine is a major factor in my daily life. Learning to work with the impact of migraine on my life and not beat myself up for how it limits me has provided a huge improvement in my quality of life. I’m off antidepressants for the first time in eight years and am doing great.

  • malna
    6 years ago

    Dear Kerrie, I read your experiences with great interest. I too got recommend the surgery as a “last hope” but have my doubts. I am also suffering from a very heavy histamine intolerance as well as several other allergies and I wonder what has helped you concerning the histamine problems, what exactly did you take for a therapy to prevent the attacks and in which way did it help? I think this is a great community to exchange experiences, also migraines can not be cured at least we know there is always hope and support and as life keeps changes with Ups and Downs, the migraines come and go the same way. Did you depressions come from the migraines or do you have a comorbidity? I suffer from recurrent brief depressions that never occur during an attack, which is great but on the other side, always went I need a rest – especially after the long hormonal triggered ones!

  • Kerrie Smyres moderator author
    6 years ago

    Great point about the latest technology. Not only is it touted as the lastest and greatest, people tend to think technology is without side effects. Not true!

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