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jmb73 (@jmb73)

Occipital Neuralgia

Brain & Nervous System | Last Active: Jul 24 10:03am | Replies (115)

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Hello fellow headache sufferers. I’ve been getting what feels like ice pick headaches for approximately 20 years. When I first started getting them ibuprofen would work. My headaches would last a few days. I would get them sporadically, sometimes not for years. About six years ago I started getting them again. I brought this up to my DDS and he thought maybe it could due to clenching my teeth. He fit me with a mouth guard, no headaches for years. Well my headaches resurfaced about a year ago. I’ve had three severe bouts in the past year. I have a new PCP and he’s diagnosed me with Trigeminal Neuralgia. What I’m reading here sounds more like I might have occipital neuralgia. My headaches start on one side of my skull and slowly work their way up to almost the top of my skull. They happen on either one side or the other. The area affected is tender to touch. Even brushing my hair in the area is painful. I’ve had an injection in my next about two years ago by my pain mgm doc, have issues with my C1 & C2. I got my latest ice pick headache three days ago and it’s still going strong. The pain can be so debilitating! I have an appt with a new neurologist next month. My former neurologist never really diagnosed my headaches plus she closed her practice without notifying her patients. 😬. Maybe I should reach out to my pain mgm doc for an evaluation and diagnosis? Appreciate any feedback. It sounds more like ON than TN which may be why the meds (Carbamazepine 100 MG 2 x day) my PCP has me taking aren’t helping with the pain away. Thanks!

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Replies to "Hello fellow headache sufferers. I’ve been getting what feels like ice pick headaches for approximately 20..."

@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.

I definitely have ON – diagnosed with nerve blocks by a pain mgmt doc, a neurologist, and a physical medicine doc. The nerve blocks helped only as long as the lidocaine lasted – about 6 hrs. Then the pain came flooding back – as it does for about a month at a time. I then experience relief for a couple of months, and back it comes. Has continued this pattern for more than 3 years. I've tried everything – most recently Botox. Nothing relieves the pain except morphine sulfate – not accupuncture, massage, physical therapy, chiropractic, medications (I'm intolerant to all of them!). I'm seeing a neurosurgeon in a few weeks to discuss possible procedures – either occipital release surgery or electrostimulation implant. Would love to hear from someone who has had either of these.

It sounds more like arteritis…you stated that brushing your hair can set one off. ON is more like a nerve issue (that’s what I was told) . I have completely desiccated discs C-3 thru 7. I call them my right side headaches…they’re coming more frequently & lasting longer…the last one was 5 days

I too have very similar problem, pain in the back of my head when laying down and I cannot wear glasses because it hurts behind my ears. I took carbamazepine also… did not work and I'm not willing to up it , due to side affects. I was misdiagnosed with trigeminal neuralgia. I am still seeking help for occipital neuralgia… cervical head aches… I now have spasming in the back of my head now. If you got any answers would love to know. And hope you are felling better.

I have tribe links neuralgia and occipital neuralgia. Botox and radio ablation helped me a lot. My etiology is small fiber neuropathy so while I have a small amount of large fiber i.e. spinal impinge ment the main problem is the small nerve fiber are degrading.