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Who knows about occipital neuralgia?
I’ve had daily headaches and shooting pain in the left side of my head for over a decade. My pain dr. has tried all the usual treatments, including ablation twice, but the only relief is from my Nalu nerve stimulator, Tylenol and ice packs.
Has anyone else experienced this? What helps you?
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PT hasn't helped me much either, painwise, but I can turn my head, though not as easily as before.
I was in a severe car accident. The car flipped over and the roof collapsed. I had intense, disabling pain that was focused on the top of my head—literally where my head hit the roof. Over about 4 years, I saw about six different neurologists but they couldn’t figure out why I was in so much pain. I tried every Rx and every therapy that was legal. My neck, shoulders, and back had no problems. Eventually, after years of arguing, my insurance company decided that they would pay for me to go to a chronic pain specialist.
There, finally, I was diagnosed with ON. I now get nerve blocks about every 3 months. I also rub diclofenac gel (Voltaren) on the painful area when I get flares.
To me, having a diagnosis is like having a handle on a suitcase. It allows me to feel somewhat in charge of things. And just like trying to carry that same suitcase without a handle, not having that diagnosis made the load impossible to deal with.
I’m glad you’re getting some relief. My doc will only do three injections/year. Plain old Icy Hot also helps a bit.
I have been suffering from diagnosed chronic occipital neuralgia for at least 5 years. I saw a pain doctor who after several medicines and shots that did not touch the pain, my doctor gave me a radio frequency nerve ablation and it worked fabulously for two years. Then it came back with a vengeance in November, 2024. I had another nerve ablation in April, 2025 which did not work and to date, I am still in horrific pain. I have been to neurologists that have given me every anti convulsive drugs like for epileptics, and migraine meds to try, but so far none have touched the pain. Has anyone anything that they have taken that absolutely works to stop the pain? I am desperate at this point. Thank you.
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3 ReactionsIs it possible that radio frequency ablation is a difficult procedure (I’m not familiar with it) which makes the outcome operator dependent? You might ask your pcp or look it up online. You could consider asking the doctor that did the procedure how many of this procedure they do annually. It just seems funny to me that it worked so well the first time but not at all the second time.
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1 Reaction@aviva the only thing that helps me is neck and shoulder stretching.
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1 ReactionSince radiofrequency ablation worked in the past, maybe you can ask your doctor if a pulsed radiofrequency treatment could be an option. It's a different approach from the conventional ablation, and it was successful for some people when the regular kind hadn't worked or had stopped being effective .
Another thing is maybe a different type of nerve block. There are Botox injections and steroid injections that can help with this kind of nerve pain.
Sometimes, a physical therapist who specialises in neck and head issues can provide some relief through specific exercises and manual therapy.
That's all I could think of, hope it helps
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2 ReactionsUnfortunately no neck stretching, neck exercise, chiropractor or manipulation of my neck at all since I have FMD in my carotids which causes dissections. But will inquire about pulsed radiofrequency as neuros and pain doctors said botox would not do anything. Thanks.
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2 ReactionsHi @aviva, I added your discussion to the Headaches & Migraine support group to help you connect with others talking about occipital neuralgia. You might also be interested in these related discussions:
https://connect.mayoclinic.org/search/discussions/
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2 ReactionsNot possible for me, but thanks