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.

@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

Unfortunately 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.

Hi @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/

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.

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.