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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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@aviva what is your FMD?
I have FND sometimes called FMD.
FUNCTIONAL NEUROLOGICAL DISORDER or
FUNCTIONAL MUSCLE DISORDER
Do you have that?
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1 ReactionON is a nerve problem. Occipital the back/neck area where the spine and neck meet.
If the nerves in that area are compressed, then the pain starts. When it first happened to me, I told the doctor that my hair hurt. It was the nerves under my scalp that made me feel like my hair hurt. It was especially painful when I was washing my hair.
My face hurt as if I was having a tooth infection or sinus infection.
My nose was numb as if I was having a migraine.
The doctor wanted to rule out another disease so I had a biopsy of my temporal artery. It was negative.
I have ON very bad and even after trying nerve ablations and all the routine headache meds (i.e. Gabapentin, Tizanidine, Ibuprofen, Amitriptyline, Carbamazepine, Topirimate), Topirimate worked to reduce the pain a lot. However, I had to stop taking because it caused Asthma-like symptoms and I couldn’t breathe. There is nothing left for me to try, I was told and I have to live with this horrific pain 24/7 as no doctor will do a nerve compression surgery because I have Fibromuscular Displaysia in my Carotids. After 15 years of this, there is no way I believe it is a migraine or should be treated as such because the pain is centered directed on the base of the skull and for me, the right side of my C1-C3. I believe it is over active nerves in this region that doctors think headache meds will work but haven’t for many of us.
@SusanEllen66 No. I have Fibromuscular Displaysia of the Carotid Arteries. It gave me two brain aneurysms, a dissected left carotid, and a blood clot to the heart 15 years ago. But it has left me with horrific Occipital Neuralgia that there is no help for as it is not a migraine nor do the migraine meds even touch the pain. I was told by my pain doctor there is nothing he can further do. My neuro sent me to his headache clinic where their meds did nothing but make me suck.
@onpainsufferer
I really appreciate your reply to my question regarding your team of migraine specialists. I, too, continue research, in my case, to find neurologists, therapists and other doctors who have knowledge, expertise and understanding of chronic pain tied in with Central Sensitiztion Syndrome (CSS).
Once again, thank you.
If you are able to share the name of the migraine center you referenced, I would appreciate it. If not possible or appropriate, I certainly understand. I hope you are on your way to identifying the best treatment for you.
@maxieg it’s Haven Headache and Migraine Center. I do believe the long-term correlation with CSS is a key in providers treating us. Too many insurance companies try to restrict migraine and ON treatments when a multi-modal treatment approach tailored to the individual could be more effective. My condition has become treatment resistant over 4.5 years and requires a team of providers to monitor and adjust. Haven does monitor daily, which I think is instrumental to recovering.
Oh, @onpainsufferer thank you so much for sharing the name of the migraine center. And, I so appreciate your explanation of all that is going on with this chronic pain associated with CSS. You sound so wise and proactive.
And, so kind to share your knowledge and research.
@maxieg USF (University of South Florida) Headache Clinic