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Occipital Neuralgia

Brain & Nervous System | Last Active: Jan 31 1:09pm | Replies (119)

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@rwinney

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):

My story ended with coming to the realization I had this umbrella of a chronic pain syndrome called central sensitization. All the meds, injections and procedures were not working because they were furthering the upregulation of my central nervous system and causing more harm than good. Doctors had nothing left to say or help me with. I had to help myself.

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?

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Replies to "Hi @lisa2022. I'm so sorry to hear about your difficulties with occipital neuralgia, headaches, jaw and..."

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.