Occipital Neuralgia: What treatments work for you?

Hi @lisa2022. I'm so sorry to hear about your difficulties with occipital neuralgia, headaches, jaw and face pain. I empathize with you. I'll share my story as food for thought.

I began having neck pain when I was 46. MRI's showed mild and moderate bulging disk and herniation. I tried PT and acupuncture to no avail. No surgical fix needed, so it was on to pain management. I had neck nerve blocks and radio frequency ablations on C4-7 for 2 years. I thought it might have been working, but not. I also was having "head pain" which encompassed migraines, cervicogenic headaches, half side, whole head, immense pressure. I couldn't lay my head on a soft pillow and slept in my living room recliner for the better part of 3 years. It was on to an occipital neuralgia diagnosis and both side occipital blocks, followed by RFA's. I also had Botox in my head, temples, forehead and shoulders. I thought that might have been helping, but not. I experienced jaw pain and face pain, among other areas. I was diagnosed with small fiber neuropathy which naturally causes nerve pain so I guessed that was my cause for everything. I got on nerve meds like Gabapentin and later Lyrica. In addition I was giving myself stomach injections of migraine meds like Emgality after trying all the triptans. Again, not much helped or was a game changer. It was a difficult, frustrating and confusing time.

I'm sharing the part of my story that is closest to yours. I always encourage people to seek out causes, fixes and cures. Get 2nd, 3rd opinions. Go to Mayo Clinic if possible. After it all, if you are still suffering, procedures and medications are not helping, doctors are out of answers, and you are becoming emotionally distressed, you may consider thinking outside the box. I came to my own conclusion of central sensitization and found this video by Dr. Sletten of the Mayo Clinic about Central Sensitization Syndrome (CSS):

Please be mindful that if you don't find your "fix" and a way to pain relief, keep this information in your back pocket as a back up plan of action and knowledge. Hopefully, I didn't overwhelm you too much. Keep your chin up and keep persevering. I wish you good luck and positive vibes.

Will you let me know your thoughts on what I've mentioned?

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

I’ve had migraines for 40+ years and FINALLY received relief when my neuro put me on Quilipta. Almost to the day of starting that, I began experiencing a new type of headache that I thought was a tumor behind my eye. Grateful it isn’t a tumor. After significant frustration and multiple specialist referrals, I returned to my neuro, who diagnosed me with ON. She has referred me for PT, with dry needling and possible nerve oblation. My first session was terrific and all he did was deep muscle massage. I am hopeful!

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

Has anyone tried Nerve stimulation for Occipital Neuralgia?

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

I have self diagnosed. Have severe stabbing pain radiating up the back of my scalp and then onto my left forehead. Currently trying to treat with Advil and gabapentin without much success. I think next step would be to see a neurologist. Interested in hearing from anyone who has experience with this condition and especially someone who has had it treated successfully.