Who knows about occipital neuralgia?

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.

You are not alone. There are many of us suffering from painful, debilitating Occipital Neuralgia. I was diagnosed 4.5 years ago when my symptoms started abruptly after getting the Moderna Covid Vaccine. After several nerve blocks, I was referred for a radiofrequency ablation which provided 20 months of full relief until late 2023. I had moved during that time and had to find new doctors. I was put on multiple medications and each time would get a little relief only to have ON pain return. I did consider occipital nerve decompression surgery earlier this year and even had a consult with a leading ON Peripheral Nerve Surgeon. But the percentages weren’t convincing enough, plus some risk that condition could end up worse. Now I finally have a medical team led by several Migraine neurologists and pain specialists. Due to the refractory nature of my condition, I am currently on a comprehensive, multimodal regimen targeting both central and peripheral pain generators. This includes high-dose neuropathic modulation (Gabapentin ) and muscle relaxants (Tizanidine) for Occipital Neuralgia, combined with a tiered migraine protocol involving CGRP inhibitors (Ajovy), abortive therapies (Ubrelvy, Zolmitriptan), and the Botox PREEMPT protocol. This pharmacologic strategy is being augmented with interventional management, including Occipital Nerve blocks and a scheduled Radiofrequency Ablation (RFA) early next year. I wish you the best in your treatments and return to heath. This is a horrible condition. One can only hope new research and treatments will be discovered.

Thank you very much for your detailed description regarding your battle with occipital neuralgia. I have not been diagnosed with ON, but all that I research describes what I have been enduring along with chronic migraines. I hope you would not mind my asking how you have gone about creating a medical team led by migraine specialists.
I have been diagnosed with CSS-central sensitization syndrome and trying to push through the pain without medication.
Thanks again for sharing your journey.

In the first several years I went though numerous doctors includes several neurologists, otolaryngologists and primary care doctors. But I kept researching not just local doctors but items that would see me virtually with an understanding of both ON and chronic Migraines. This lead me to a neurologist at a virtual migraine center willing to acknowledge my migraines are related to my ON and create a plan with other medical providers she felt were needed, like vestibular and physical therapists, pain specialist and others. They’re treating both with multiple modalities. Also, she’s willing to be open minded on the root cause.

@aviva what is your FMD?

I have FND sometimes called FMD.
FUNCTIONAL NEUROLOGICAL DISORDER or
FUNCTIONAL MUSCLE DISORDER

Do you have that?

ON 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.