Occipital Neuralgia

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.

@lisa2022 Hi Lisa. Have you been seen at Mayo as a patient? I saw in your other comments something about a neurologist. One question I have is what is the condition of your cervical spine that is causing the pain and leading to the ablations?

I have had similar symptoms with pain on the back of my head, and misalignment of my jaw with jaw or face pain at times. That has happened when my upper cervical vertebrae were twisted or tilted by muscle spasms. There are so many muscles attached to the vertebrae, that twisting them will stretch one side and cause pain up the back side of my head. I also have thoracic outlet syndrome and one side of my neck is tighter than the other and probably causes the independent rotation of the vertebrae. I had vertigo a few times. I had a compressed spinal cord because of a collapsed C5/C6 disc and bone spurs that were pressing into it, and I had spine decompression surgery at Mayo. I still work on the TOS in physical therapy.

From what you describe with increased pain when laying on either side, it may be that your neck is not fully supported and not in line with the body. If there are narrowed spaces around the nerve roots, side bending could bring on pain. I did experience that because my disc had collapsed 50%, and if I bent my neck to the side, the bone contacted the nerve exiting at that level and brought on very sharp pains. If your jaw is out of alignment. it can cause pain because it can compress the very small spaces where nerves travel between the angle of the jaw and your ear. Having cervical vertebrae moving around, and a misaligned jaw will throw everything off and I have dealt with that in physical therapy.

Can you give me some more information about cervical spine issues? Do you have recent imaging and a diagnosis of a structural spine issue?

Hello and thank you for your reply. I saw a cervical spine doctor... ( who gave me very little time, basically a quick glance at my MRI) He said I should have a nerve ablation, because of the pain in the back of my head. The pain guy was not confident that it would help me, but thought it may be worth a try. I have two problems, although I believe they are related to each other. My first experience was 5 years ago, with teeth aching and face pain. It lasted for about 8 months and went away. But I also had headaches which I did not associate with the face pain. I have had several bouts of this and the last started in July of 2021 and progressed to the back of my head having pain, not even a pillow could touch it. ( Occipital neuralgia) most of the pain is on my right side, I cannot lay on my right side, but even laying on my left side causes my right side to hurt. Now, I'm also starting to "trigger" pain by hard chewing or cold food... so I now avoid chewing food on the right side. It's horrible.. I don't sleep well.. I did see THREE different neurologist. They all want to just give you anticonvulsants, no one wants to figure out WHY or WHAT is causing the pain, they just want to drug you. I know the drugs fail over time and they have bad side effects. I am 58, and plan on living at least 25 more years, I can't see myself on seizure medication for nearly 30 years, I work, I drive and I have to be high functioning. I have had two of the doctors tell me I have TN, and TN is closely connected to the cervical spine nerves. I have "moderate" disc degeneration in c4,c5, c6 and osteophytes on the Vertebrae. I do feel like my jaw is sore most of the time ( right side) , however, I do not have TMJ, I don't grind my teeth... I'm sure most of this has to do with my neck, but no one is helping me solve the problem. I have had numerous images taken on my brain and cervical spine. Any suggestions?

@lisa2022 It sounds like no one is looking at the physical reasons for your symptoms. I personally don't trust a doctor with a quick opinion without an explanation as to why they think this is the best choice for you. It sounds like they are guessing. I wouldn't let a doctor do a procedure if they don't fully understand the problem they are trying to solve.

My jaw pressure was off so much that I ground down my dental fillings on only one side of my mouth and my dentist was puzzled. A lot of patients who have a spine problem because of an injury like a whiplash, may also have thoracic outlet syndrome that can also be related to the injury and other things like physical build, heredity or repetitive activities. The problem with TOS is many doctors don't understand it because they don't spend much time on it in medical school, so it goes undiagnosed and untreated. Often treatment is physical therapy; not surgery. A neurologist should know about this, and if your neurologists have not even considered a possible diagnosis of TOS with your symptoms, they are not doing their jobs. There are not many places to go that understand TOS, but Mayo Clinic is one of them that does diagnose it.

Having a cervical spine problem along with TOS adds overlapping similar symptoms and will confuse a lot of doctors. I came to Mayo after 5 spine surgeons turned me down for surgery to decompress my spinal cord and all could clearly understand the MRI that showed the problem, but they could not connect my symptoms to the imaging, that is until I found a great surgeon at Mayo. His name is Jeremy Fogelson and he consulted with other specialists at Mayo who were testing my TOS in the vascular lab while I was there for my consult. I highly recommend him.

https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Alignment of everything is important, the spine, the way the skull sits on the spine, the jaw, the shoulder position... it's all tied to the neck and spine. In addition to a great surgeon, you also need a good physical therapist who can help rehab all of this before and after surgery. I think you would be better off seeing a good spine surgeon who deals in spine deformity. Neurologists are not surgeons and don't fix structural problems.

If you want to be seen at Mayo Clinic, this link will let you check if your insurance is in network at Mayo. This is very important because spine surgery is expensive. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
If there are any questions, call the billing department and they will help.

If you want to request an appointment at Mayo Clinic, you can use this link to get started.
http://mayocl.in/1mtmR63

To get an appointment in neurosurgery or orthopedic spine surgery, you will need copies of your imaging to be able to mail to Mayo. A coordinator will call you back after you make a request to be seen either from this link or by phone. In my case, after that, I spoke with a triage nurse from neurosurgery and they set up a temporary patient account so could mail in my records and imaging. Once that is all uploaded in the system, a surgeon will review the case. I requested that my records be reviewed by Dr. Fogelson because I had read his medical papers and knew he would be a good fit for my issues. I have a background in biology and learned a lot about spine surgery before I came to Mayo, and the important clue to what all the other surgeons missed with me came from something I read in one of Dr. Fogelson's papers which lead me to other medical literature with cases like mine. I had found my answer.

Do you want to consider a spine surgery consult? Can I answer other questions about my experience of spine surgery at Mayo Clinic and my rehab afterward?

I may go this route. I have a follow up with the pain management doctor in 2 weeks.. and I'm going to consider botox ..( if I can find someone who can inject for TN) wondering if someone at Mayo does this??? If these don't help me.. I will probably make the appointment, I want to know if they have "motion" xray to evaluate what happens when I move my neck. I think this would be important to understand what is going on.

@lisa2022 I do know that imaging can be done in different positions that can demonstrate movement or instability of the spine, and then on the computer on the MRI or X-ray image, they can measure if there is movement by clicking the cursor and get a precise measurement on how much movement. They also measure stenosis this way to show narrowing as compared to what normal measurements are. I think the motion X-rays are used for things like a swallowing study that depends on needing to see the moving image of a barium drink as it is swallowed. They will ask for the imaging they need, and don't want to add unnecessary tests and costs. Does that help clarify?

Hi @marier59, I see that you joined Connect back in March and you mentioned in another discussion that you have occipital neuralgia. I thought I would tag you in this discussion on occipital neuralgia so that you can meet other members with the same or similar symptoms who have shared their experience -- Occipital Neuralgia: https://connect.mayoclinic.org/discussion/occipital-neuralgia/.

You can click on the link above to go to the top of the discussion are read through the posts to learn what others have shared. Do you have any questions about occipital neuralgia for the group?

Hi @lisa2022. I'm so sorry to hear about your difficulties with occipital neuralgia, headaches, jaw and face pain. I empathize with you. I'll share my story as food for thought.

I began having neck pain when I was 46. MRI's showed mild and moderate bulging disk and herniation. I tried PT and acupuncture to no avail. No surgical fix needed, so it was on to pain management. I had neck nerve blocks and radio frequency ablations on C4-7 for 2 years. I thought it might have been working, but not. I also was having "head pain" which encompassed migraines, cervicogenic headaches, half side, whole head, immense pressure. I couldn't lay my head on a soft pillow and slept in my living room recliner for the better part of 3 years. It was on to an occipital neuralgia diagnosis and both side occipital blocks, followed by RFA's. I also had Botox in my head, temples, forehead and shoulders. I thought that might have been helping, but not. I experienced jaw pain and face pain, among other areas. I was diagnosed with small fiber neuropathy which naturally causes nerve pain so I guessed that was my cause for everything. I got on nerve meds like Gabapentin and later Lyrica. In addition I was giving myself stomach injections of migraine meds like Emgality after trying all the triptans. Again, not much helped or was a game changer. It was a difficult, frustrating and confusing time.

I'm sharing the part of my story that is closest to yours. I always encourage people to seek out causes, fixes and cures. Get 2nd, 3rd opinions. Go to Mayo Clinic if possible. After it all, if you are still suffering, procedures and medications are not helping, doctors are out of answers, and you are becoming emotionally distressed, you may consider thinking outside the box. I came to my own conclusion of central sensitization and found this video by Dr. Sletten of the Mayo Clinic about Central Sensitization Syndrome (CSS):

My story ended with coming to the realization I had this umbrella of a chronic pain syndrome called central sensitization. All the meds, injections and procedures were not working because they were furthering the upregulation of my central nervous system and causing more harm than good. Doctors had nothing left to say or help me with. I had to help myself.

Please be mindful that if you don't find your "fix" and a way to pain relief, keep this information in your back pocket as a back up plan of action and knowledge. Hopefully, I didn't overwhelm you too much. Keep your chin up and keep persevering. I wish you good luck and positive vibes.

Will you let me know your thoughts on what I've mentioned?

Hello Rachel, I have seen this video and thought about it.. I believe "some" but not all , of my pain could be an overloaded nerve system. I feel overwhelmed often. Something is going on with my neck however. It hurts to lay down. I could be 80% pain free while sitting up.. it's when something touches or put pressure on my face or head. But taking better care of myself could very well assist in helping me. I've started doing breathing exercises. ( I watched Wim Hof) at this point, I would drink cat urine if you told me it would fix things. I will keep this on the table for things to consider. Thank you for taking the time to respond and provide this video... I had watched about 4 months ago and forgot about it.

@lisa2022 I understand feeling overwhelmed. Please remember your self-care during this time and positive distraction. Calming through diaphragmatic breathing (which you're doing ) with mindfulness and meditation can help settle your stress, anxiety and allow yourself intermittent peace. You deserve that! I found that scheduling moments of calmness helped me begin a routine versus just applying when needed.

I feel you on the drinking cat urine thing (as gross as that sounds). Desperate times call for desperate measures. Lol!

Stay the course on holding doctors accountable to trouble shoot what you feel is wrong with your neck. @jenniferhunter has given you great information in that area. It's your body and important to be an active participant in your health care. Good luck!