Occipital nerve stimulator for migraine

By kelia

2 min read

Hello,

I have had migraines for the past 16 years and no better now then I was then. I have tried everything that is possible and then some. I also go to the Diamond Headache Clinic for the past 16 years. It seems like I am just on a rotating circle. I usually go inpatient about every 3 months for about 14-18 days. Then i usually leave with about the pain scale of a 5. Which I have leaned to accept.

I participated in the research study for the occipital nerve stimulator (which is now FDA approved for migraines). When I first got it placed I was like a new person. I was able to go back to work, after being on disability for 6 years, and i thought life was going to get better. After 2 months it quit working so they went in and found that a wire broke so they replaced it. After that it just wasn't the same. After 7 more surgeries to try and get proper placement I decided to have it pulled and withdraw from the study. I later was referred to a neurosurgeon who placed another one in. Still doesn't work. There is just too much scar tissue to get proper stimulation. So i am back to my original misery.

I am still working but i don't know for how much longer. And now things are just really bad. My dad passed away last week unexpectedly and I am really having a hard time dealing with that. I know that GOD doesn't give you anything that you cant handle but when is enough enough. Its just doesn't seem to be getting any better and I am at a loss on what to do next. I feel like I am just going though the motions of a daily routine and then when I go to bed I cry myself to sleep. Crying because I miss my dad and because my head just hurts. I gave up going to the ER because they just make me feel like a drug seeker. I am using all my injections twice a day which are either Norflex, benadryl, toradol, nubain, triple shot or dhe.

So if I ever get my migraines to break I am going to rebound like crazy. I will be getting admitted back into the hospital in March so if I can just hold out until then. I keep praying that tomorrow will be a better day that's about all I can do right now.

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cynkitty78 Member
Hugs to you my dear friend 😁 I'm still not much better either and I'm outta all my shots. I get to start back to work on Sat n Sun will just be 4hr shifts but I think that is all I can take for now.
diana-lee Member
Oh dear. I'm so sorry for your situation and your loss. I'm at the point where an occipital nerve stimulator is probably the last real option for me to try, but haven't done that yet. We'll see. Does anything help with coping for you? For me mindfulness has been a major blessing. I'm not a particularly religious person, but having a way to cope with the enormity of pain and the changes it has brought in my life has been a godsend. I can recommend some resources if you're interested.
1. kelia Member
 I would appreciate some resources that would be nice. If you have the option of getting an stimulator I would go for it. Even though mine doesn't work now at the beginning it was great. I would recommend it to anyone because not everyone will have the bad luck like me. Its like by the time you get to the point that we are at anything is worth a try. I keep hoping that something will break this horrible migraine cycle that I am in but so far nothing. Making myself get up and go to work is the only thing that is keeping me going. It would be so much easier to just give up and stay in bed but I just don't feel like giving up yet. I love working. I have realized that staying in bed doen't help either. At least at work I can occupy my mind for 8 hours a day. I keep taking it day by day and pray that tomorrow will be better.
2. diana-lee Member
 There are three resources I would recommend for starting out with mindfulness in this context: Full Catastrophe Living by Jon Kabat Zinn How to Be Sick by Toni Bernhard Break Through Pain by Shinzen Young Young's product is a combination book and CD, which I really like because having guidance in getting started is extremely helpful. I have lots of other resources at my personal blog, <a href='https://SomebodyHealMe.com' target='_blank' rel='noopener noreferrer ugc'>SomebodyHealMe.com</a>, too. Take care. I hope these books might provide some help to you as they have for me!
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I totally understand how you feel and I'm so sorry you have to go through this..Where are you located because I can tell you there's not a Dr. around Winston-Salem NC that wants to help like you say they all think you are a drug seeker when you are just trying to get some relief from the migraine pain. Usually the Nubain works for me but they don't want to give it to me and the Neurologist says if you have any caffeine in your body they won't help you...
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I understand exactly how you feel, I have been dealing with my migraines now for 22 years as a result from a car accident. I have migraines on a daily basis and not only that I have seizures too! Sometimes I feel like ending my life because it hurts so bad, between the stress of the migraines, the seizures, and the memory problems it's allot to deal with. I hope you find something that works for you because I sure haven't found anything that works for myself.
1. not found
 I sent u a friend request. u dont haft to accept but I just thought maybe we could talk cause we both sound like we are in the same stage with are head! Fed Up! And tired of fighting! 
2. not found
 Hey Bobby 😀) I can totally relate to your feelings... Feeling helpless and hopeless is a feeling that nobody should have to deal with.... I am older now, but when I was about 22 or so, I was on my like 9 millionth day of puking and wanting to die... I laid in bed with a shotgun, hugging it... I just wanted out.... I also have a friend, who is a guy and he gets horrible cluster migraines, and he tried using medical oxygen straight out of the tank, and they would relieve them.. weird, but not.. I tried it, it didn't work as well, but I did notice a difference..... I would say try it!! Everyone is different, and if that worked even a little for u would be great!
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Hi 😀) I have this same implant... got it in 2006 in the Seattle area.... It does absolutely nothing for me for the past 5 years and have since then been put on disability, had countless rounds of botox injections, had a food sensitivity test done and nutritionist work with me to cater my diet, all for nothing in my eyes... I'm just dumping money into "what if's" because I am so desperate for relief..... I suggest getting a good nurologist... they understand WAY more than the general doctor's do.... My family doctor once told me that my migraines were being caused by my eyebrow ring.... Come on man, REALLY? I totally feel your pain... Feeling helpless and hopeless with this disease is something I do not wish on anybody, ever......
1. not found
 Have you ever had a MRI done? My sister-in-law sruggles with migraines and recently discovered she has chiari malformation. There is a surgery to take care of this that looks promising. If you look it up online they list all the symptons.
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I understand what you are going through..im sorry for your loss. Ive been having migraines for 23 years every since my son was born. Daily pain, memory loss, fibromyagia, does the pain ever stop.... Tried alot of medicines over the years and at times get that look as if their saying I'm a drug seeker. No I'm not I would say just want to live without pain. Take care thanks for sharing.
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I'm sorry you didn't have any luck with the nerve stimulator. I've had mine since June 2009 and it has changed my life! It's been the only thing to give me relief. Unfortunately, there are a LOT of bad surgeons out there; I've heard many horror stories. I think I just got lucky to find the one I did. I cannot imagine how depressing it would be to go back to the condition I was in before the stimulator.
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Why do you keep admitted to the hospital? No one has ever mentioned to me to be admitted. I have them 90% of the time. I just live with them in bed and cry most of my life. What does being admitted do for you? No one can do anything for me. Just curious.
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Hi, I just got back from my Neuro doc in N.C. After suffering for almost 15 years, with trigeminal schwannoma. Taking the whole range of meds, with no results. They now are talking the nerve stimulator. Yes I am scared, but feel like I need to try it. I am on a time released morphine, and other drugs along with that. I am still getting, "Brain Pains". That is what I call them. I can have from 10 to 50 plus, brain pains a day.. I am very depressed most days. I am lucky to have a Husband that is there for me. Helps me through some bad days. I would like to know, do they shave some of your hair, how long does it take to find the right spot on the 5th cranial nerve.
1. not found
 Did you get an answer or call back the doc?
meghanwalters-himes Member
Hello, I read your article and I would like to offer my deepest sympathy in the loss of your father. I have been a chronic migraine sufferer for 25 years now. I am a 30 year old mother of one and happily married for eight years. I have had five nerve detachment surgeries hoping to gain some relief and have some type of normalcy in my life, but to no avail. If possible they actually made me worse! I too know and understand the hopelessness and sadness that comes with the day to day illness that comes along with having migraine headaches. I have an excellent neurologist that has tried everything from Botox to propofol treatments to self-injected DHE and toradol to ICU lidacane infusions, but with no success. I have been looking into the nerve stimulator more seriously, as it seems at this point I have truly tried everything! I am a strong Christian woman and I believe that everything happens for a reason. I feel that something has got to help at some point. I also feel the people who really suffer are my husband and son because I am strong enough to deal with the pain, but they need a functioning wife and mom. I too, have dealt with the jerky doctors at the emergency room who straight up ask me if I am narcotic seeking and refuse to treat my pain. It makes you wonder if they truly understand what pain is and what a migraine look and feels like. I would like to wish you nothing but the best and pray that someday you will find some type of relief and comfort. I also wanted to reassure you that there are other people out there that completely know and understand exactly what you are going through. Thank you for your comments and feedback on the nerve stimulator. Someday, somewhere, someone, WILL find a cure for migraines!