Occipital Neuralgia: What treatments work for you?

Hello Jennifer, I read your comments and they are similar ( but different) than mine. I have pain in the back off my head when laying down and my scalp is sensitive to touch, but its much worse than that, I also have face pain, jaw pain, pain behind my ear. I just did a nerve ablation of c1,c2,c3,c4 and I'm three weeks in, however, I have not seen any improvement. I know this pain I have I is related to my cervical spine, as movement can light up the nerves and I cannot lay on my right or left side for that matter. Sleeping is difficult and my pain ranges from day to day. I have started to get pain when eating now... so, I have symptoms of both Occipital Neuralgia and Trigeminal Neuralgia. Do you have a doctor that has experience with upper cervical spine issues and treating people with ON/TN? I'm 58 and I don't want to be on a lifetime of anticonvulsants ( which fail over time) not to mention the side effects. Any help is appreciated.

@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 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.

Hi @wa34937 - if you click the View & Reply button at the bottom of this email notification, it will take you to the ON discussion where Colleen moved your post. Then just scroll to the top and you can see the discussion description and posts made by other members.

Hi Colleen,
Would you mind showing me that group? I’ve had ON for two years straight now and it’s getting increasingly worse. I’d love to connect with others to see what works for them.

Hi @wa34937, I moved your message to this discussion about Occipital Neuralgia in the Brain & Nervous System group so that you can connect with @jmb73 @bumble81 @jenniferhunter @rwinney @eifeltower @jlfisher56 and others with ON.

Wa, is this a recent diagnosis for you? What sypmtoms do you experience and what treatments are you considering?

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!

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.

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!

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!