Occipital Neuralgia: What treatments work for you?

Has anyone found a solution to the pain and burning each episode brings

Hello, I hope you have found relief by now. Mine is also positional, just when I lie down. I have received some relief by taking two rounds of two steroid shots in the back of my head. It’s almost completely gone, and now I can sleep through the night again.

Hello Rachel, I have seen this video and thought about it.. I believe "some" but not all , of my pain could be an overloaded nerve system. I feel overwhelmed often. Something is going on with my neck however. It hurts to lay down. I could be 80% pain free while sitting up.. it's when something touches or put pressure on my face or head. But taking better care of myself could very well assist in helping me. I've started doing breathing exercises. ( I watched Wim Hof) at this point, I would drink cat urine if you told me it would fix things. I will keep this on the table for things to consider. Thank you for taking the time to respond and provide this video... I had watched about 4 months ago and forgot about it.

Hello, are your symptoms positional? I have something similar but it only takes place when I lie down and then for the rest of the night. The pain is very, very intense and I'm conscious of it the entire time I'm sleeping. When I get up it begins to wear off and can take close to an hour. But it is only on one side, only positional, and centered just above and around the top of my ear. If I touch my ear at the point of attachment to my head, that really hurts and even if I turn my head I reproduce that pain in my ear. Thank you so much for sharing your story
and I wish you all the best, Sunnyflower

Hello Rachel, I have seen this video and thought about it.. I believe "some" but not all , of my pain could be an overloaded nerve system. I feel overwhelmed often. Something is going on with my neck however. It hurts to lay down. I could be 80% pain free while sitting up.. it's when something touches or put pressure on my face or head. But taking better care of myself could very well assist in helping me. I've started doing breathing exercises. ( I watched Wim Hof) at this point, I would drink cat urine if you told me it would fix things. I will keep this on the table for things to consider. Thank you for taking the time to respond and provide this video... I had watched about 4 months ago and forgot about it.

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?

Marylynn... I see you stated that you had Botox AND an ablation.. I am still suffering. I did a nerve ablation of c1,c2,c3,c4 three weeks ago and have not seen any improvement. I have both occipital nerve pain when lying down and face and jaw pain, so trigeminal neuralgia too. I have only hade Botox for neck spasming, but now want to try it for the trigeminal neuralgia pain. Do you or anyone reading this know if someone at Mayo will inject for TN? I have read that they can inject the "zygomatic arch" .. I have horrible pain in the right side of my head. "temporalis muscles" and I want to have these areas injected before I resort to anticonvulsants. ( I have to drive and function at a high level) I have something wrong with my neck and its not plainly visible on an MRI,( just age related disc degeneration) ultimately I would like to find a doctor who can find out what structurally is causing this pain. AND FIX IT.