Occipital Neuralgia

@mattie77 What kind of issues do you have with C1 & C2? That can be the source of your headaches. I am a cervical spine surgery patient and I used to get bad occipital headaches and vertigo that happened when C1 & C2 were rotated or tilted. My muscle spasms calmed down after I had a C5/C6 fusion. I also have thoracic outlet syndrome (TOS) that makes my neck and chest tighter on one side, and I suspect that is why my vertebrae will rotate on their own. Physical therapy has helped a lot. My PT could get my vertebrae realigned with the proper curve again which relieves pain except for the affected disc. You may want to look at our discussion on MFR or myofascial release. These other links may be of interest too.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://mskneurology.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/
https://mskneurology.com/atlas-joint-instability-causes-consequences-solutions/
https://mskneurology.com/true-cause-solution-temporomandibular-dysfunction-tmd/

I"ve had O.N. for 3 years. The episodes last anywhere from 14 days to 34 days. The pain is a 9 out of 10 and it's fairly constant. They happen approximately every 3 months. I"ve had all the injections except Botox. I have 2 more sets of those. Then that will be the end of the medical therapies. I can't tolerate any useful medications. Next will come the surgeries, but I'm desperate. I'd love to hear from someone who has had Occipital release surgery.

@authorchris has the first round of Botox proven helpful? Did your neurologist suggestion considering the Occipital Release Surgery? Conversely, have you heard of Occipital Release Therapy?

No. The first round of Botox (30 injections) did nothing. In fact, I'm just now (April 29) in the end stages of an O.N. episode that began March 31. (6 wks after the Botox) I was nearly crazy with the pain. I have 2 more rounds of Botox, and then I will seek a surgical solution. No, my neurologist had never even heard of occipital release surgery when I mentioned it. Can you tell me about occipital release therapy?

@authorchris I am not personally familiar with it, however, came across it being mentioned when was looking for a link to share with you. It may be worth looking into as a non-surgical option. If you look into it, please come back and share what you find out.

All I could find were some exercises that were similar to those prescribed for me by my Physical Therapist. Nothing I haven't tried before. I appreciate the suggestion.

I have exactly as you describe, but have not been diagnosed as no doc can find out what it is. Did you go to a physio or a neurologist?

Hello @carenr and welcome to Mayo Clinic Connect. I can see you are interested in learning more from @sunnyflower as you have a very similar experience.

Have you been to see a neurologist yet?

I see a neurologist. She has prescribed medications that I cannot tolerate. Each one makes me nauseous. She has also given me various injections (several trigger points, 6 occipital nerve blocks) and prescribed physical therapy which I had already been doing for years. I'm now awaiting my 2nd round of Botox injections. However, a few weeks after the first set, I developed another ON headache that lasted nearly a month. You can see why I don't have much hope for the remainder of the Botox. For this reason, I was asking about occipital release surgery - wondering whether others might have undergone this procedure and whether it was successful long-term.

Thank you for your suggestion. I did check on Occipital Release Therapy - specifically, the John Barnes method. There is one practitioner near me. Unfortunately, she charges $160/session and does not take insurance nor is the registered with Medicare. Although the treatment sounded promising, this is not within my budget. The first round of Botox was not helpful at all. In fact, I'm just recovering from a month-long bout of O.N. The constant pain nearly killed me. The second round is scheduled for end of May. I'll do it, but I'm not very hopeful. My neurologist had never heard of occipital release therapy although it is offered by 2 hospitals here in the Los Angeles area.