Dealing with Occipital Neuralgia: Seeking Advice

I would definitely recommend seeing a neurologist as a start.

I’ve had this pain but it was due to the remnants of falling and hitting my head but it lasted for years after I’ve only found that getting a massage and having the muscles try to stay loose and not get too stressed while also working on range of motion on the neck very slowly every day to try to keep that area loose, Also making sure when you sleep you keep your neck in neutral which is easier for sleeping on your back I still have the pain flare up anytime that I’m sick or start a new medicine and it’s horrible so I know how you feel but it went from being a daily problem to eventually fading after trying to make changes wishing you the best I did go to a pain specialist who recommended occipital nerve block but I ended up not doing it But I would recommend considering it if nothing else works and it continues long-term

I think I have this too. It’s the only thing that makes sense and explains what’s going on. I haven’t seen a doctor yet but I have general nerve pain all over my body that I haven’t been able to figure out for years.

Did you happen to receive any of the COVID vaccines? The same pain started for me afterward

You can get occipital nerve blocks.

Yes, I was diagnosed with this in February and I have had symptoms since Christmas last year. It's the worst thing that's ever happened to me pretty much. I've been in pain or extremely uncomfortable every 2nd of every day since Christmas. I have the same symptoms and they never go away. I feel like I'm in more control now though now that I know what it is and now that my anxiety has died down about the whole situation. Whole situation. It was really hard to accept the fact that this might be a lifelong thing. For some people it goes away and for some people it doesn't. Mine has gotten better but I still have ear pressure, tinnitus and lightheaded feeling never goes away.

Is this bilateral or unilateral? What areas of the head, neck, or face do you feel the pain or sensation radiates to?

See a neurosurgeon and get a scan of the cervical spine and skull base. Ask about C1, C2 rotation or elongated styloid process.