Occipital Neuralgia: What treatments work for you?

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!

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 haven’t seen any posts about occipital neuralgia, which causes frequent severe pain on one or both sides of the head. I’ve had it 10+ years, but normally it should resolve in a few weeks. We’ve tried everything I’ve read about, from Botox to ablation. I wear a Nalu neurostimulator with two electrodes, which gives some relief, and take two meds plus several Tylenols/day.I’d love to hear from anyone who has experienced this, or who can recommend non-traditional methods for relief.

Going to see neurologist first...see what he thinks...will be a while they told me hard to get in!!! Thanks for comments!!!

Please let us know if it works for you. I cancelled my nerve block because I was concerned about other people's reactions to it. Good luck and Be safe

I have finally been diagnosed with occipital neuroligia, go for nerve blocks soon. I have all of your symptoms and pain in ear , cheek, eyes.
I'll let you know if it works ok.
Cindi from Massachusetts

I have burning in my top of my head , especially the middle of my brain...Soo intense...and then tingling moves around to side front... lots of neck pain and stiffness and back herniated disc and degenerative spine starting... Dr.s never understand...and had this many years,I'm almost 50... it's Soo bad...I get hot fever up there too in my top of my head...Dr is referring me to my closest pain clinic...so I can see neurologist Soon... it's unbearable anymore!!! 😓

Thanks so much for getting back to me. Your PT suggestion is a good one. I've been many times and I continue to practice the specific exercises they'e given me. In the past I thought they were useful, but now I'm not so sure. I, too, am negatively affected by a too high pillow. I feel the result quite quickly and change to a softer, lower one. I think there may be some better way to sleep, but I have yet to find it. One of the most annoying things is that the gentle blowing of the wind can set off the pain. More than once I've set out on a walk with no pain, only to get caught in a breeze and come home with searing pain. I've been with Kaiser for the past 12 years, and I've been satisfied with the care I've received - until now. I'm very disappointed with their lack of response to my severe pain, so I'm meeting with a Medicare ins. person today to discuss other options. I'm thinking a new neurologist might have a different approach, and if not, then I've got a wider pool of neurosurgeons if I choose to have an occipital nerve decompression procedure in the future. Thanks again for your response.

@authorchris
I had daily issues with occipital neuralgia for 2 years about 15-20 years ago in my late 40s. I would have terrible lightning bolts of searing pain shoot across the top of my head, slightly left of center. This was a long time ago and I didn't take notes so this is my old memory of it. I remember it happening frequently throughout the day. If it had been non-stop, I would not have been able to function it was such severe pain, but it was like a single bolt every so often. It stopped me in my boots when it happened. After two years, I was convinced I must have a brain tumor and sought out a neurologist who told me it was ON and generally originates in the neck. I did have a lot of neck issues (still do) including from a previous whiplash and other causes. It seems like he may have given me some exercises or something for my neck. I do know that it stopped not too long after I saw him so I must have done something he said that worked. I still have the occasional shooting pain of ON, but it's so seldom that it's not a concern anymore. I can't take pain meds either. Do you have any neck issues? If so, I wonder if physical therapy to resolve those may be of any help. I haven't read up on ON since then so I'm not sure what the current thinking is on it or what else may trigger it, but what he said made sense to me at the time. Hope you can find some relief soon.

I just scrolled up a bit and see some mention of bed pillows. I have never found the perfect pillow for my neck and they are always an issue. I do know that, for me, one that's too high is worse than one that is too low. I'm like Goldilocks with pillows -- too high, too low, too hard, too soft.

Hi Sharing
I am also 76. I began having O.N. in 2018. The episodes last 4-6 wks with 9 out of 10 pain. Then I have 2-3 months with no pain. I've tried so many treatments (including Botox), but I'm particularly sensitive to chemicals, making anything useful (like gabapentin or Lyrica) totally ineffective for me. I'm unable to function with this pain, and I'm wondering whether what I'm experiencing is different from the norm - or whether I'm just a wimp when it comes to pain (I also have fibromyalgia). I have constant Level 9, searing, burning pain up the back of my head along with electric shocks that occur often as 45 per hour. When they occur, my breath catches, and my mind goes blank - totally limiting my ability to function. I'm wondering how this compares to what other people with ON experience. I'm fortunate in that morphine sulfate controls the pain for approx. 6 hr. at a time. Without it I don't think I'd still be on this earth.