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Chronic Occipital Neuralgia now doctors trying to treat as migraines?
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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Is 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.
Since 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/?search=Occipital%20Neuralgia
Not possible for me, but thanks
I don’t see a pcp for this and because I have FMD in my ICA which I was born with, it caused two brain aneurysms, a dissected carotid, and a blood clot to the heart 15 years ago which left me with occipital neuralgia, pain management are my only options. Apparently these days, the medical field has related occipital neuralgia to migraines, which may or may not be true in my opinion because I have tried almost every drug for migraines, including anti convulsants and none so far have touched the pain. The only thing that worked was a nerve ablation which lasted 2 years which leads me to believe in my case, it is a nerve issue and not a headache issue. Even though the second nerve ablation did not work, I have scheduled a third one yesterday to see if the wrong nerve was ablaised. Will let you know next month. Thank you for your comment and sorry for my lengthy one but I am very knowledgeable in this area but wanted to see what others were having success with and how their occipital neuralgia was being classified.