Occipital Neuralgia

Hi @pierwell, you have my sympathy, 10 years with this terrible condition!
In 11/2023 I started with a very stiff neck on my left side, then excruciating quick pains that shot up my head, maybe 10 times a day. At the same time, I had a relapse of an autoimmune disorder that attacks the head, neck and shoulders (Giant Cell Arteritis). I went to physical therapy, did the exercises, no real relief. Also went on prednisone for the GCA.
I've tried different cervical pillows. I wake up with a pressing numb feeling on the side of my head that lasts throughout the day.
I use a shiatsu massager with heat, every day for at least two 15 minute sessions, on my neck and shoulders.
My doctor recently prescribed a muscle relaxer, Baclofen, two 5 mg at night and one in the morning. It reduced those stabbing pains by 50%.
I also have tried a neck stretcher, the kind that hangs from a door, and a support collar, which helps.
The best relief comes from a homemade oil with jojoba oil and oil of peppermint which I rub on the affected area. It creates a very cool sensation and provides relief. Peppermint can relieve headaches. You can read about it on Perplexity.ai (I need more peppermint oil than the recommended amount). Also be careful not to get it in your eyes.
If I don't initiate body movements with my head I don't get those shooting pains. I try to keep my chin level.
I take a couple of tylenol , 325 mg, once in a while when it really bothers me and keep doing the exercises and stretches I got from PT.
Some people have had success with massage therapists. I'm going to try that next.
I also need a shoulder replacement (right side). Doc thinks I'm over compensating and this is why my neck is compromised.
Another treatment is a steroid shot with lidocaine, I think, but I would have to travel too far to get that.
I'm going to look into the Nalu device.
Take care and please post if you find effective remedies.

I had trigemenal neuralgia. There are three nerve roots meeting back by the side of the face. It was the most horrific pain I ever had for about 2 or 3 months. Sent me straight to bed with an opioid pain reliever like a migraine but on my face. For two years before that, I had a "bite" that caused me pain for which my GREAT dentist adjusted the bite every year from a crown that we thought might be the source or moving teeth. That is 2.5 years of suffering. One night, I bit something soft - salmon sushi - there was grit. I put my finger in the back of my mouth and my wisdom tooth felt sharp. I scheduled THREE dentists on Monday morning. First xray showed I cracked my wisdom tooth clear up into the gum. Broke on the diagonal. My second endodontist did not do extractions. My third GREAT dentist had it out in 5 minutes with no residual pain. I even ate dinner! That was THE END of my trigeminal neuralgia! I learned that they can't see hairline fractures in one's teeth. I go for xrays every year and take great care of my teeth. I'm glad this happened before I started the rounds with the neurologist and specialist. I do believe and hope you will find a resolution.
From what you describe, you might need to see a spine surgeon. I had shooting pains up the back of my neck, head, around the back, and front around the ear. It was part of a degenerating spine. I would get trigger point injections and Botox injections into the trapezius/levator scapula and rhomboid area (basically the base of the neck) to stop my bulked-out shoulder muscles (so weighty) tugging on the neck to the head. Try a REALLY GREAT MFR THERAPIST. There is a section here. It became obvious after a couple of intense years that my neck vertebrae were too weak to support the muscle weight tugging up my head. Check your posture for sure. Wear a 3" soft foam neck cushion a few hours a day and see if that helps. You really need to BEGIN with an MRI and an XRAY and a good Cervical Spine surgeon to look at the "foundation/structure" of your "house." Its starts with that heavy bowling ball we call our "head." When it turns and is held at improper angles, and the bones and muscles have to strain to hold it in position, all kinds of consequences occur. It took several years of horrible pain to get my surgeon to do surgery. I didn't "present" right. Good surgical candidates have radiating pain to their shoulders and even to their fingers. But I eventually couldn't move, so he had to. But, it is complicated. So, I still have to reset my posture, and I am still in therapy with the MFR therapist to break down all the back shoulder muscles tugging as a unit. (that will take a couple of years because I still insist on working at 68! Life is a balancing act! good luck!