Occipital Neuralgia: What treatments work for you?

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

I've been diagnosed with Occipital Neuralgia. I want to hear from others about this painful conditionn.

Had it ever since I contracted mono in my 20s… it was almost overnight after the high fever. I’m 61 now… have had nerve blocks don’t work the actual injection caused a nodule/swelling at insertion sites at either side of occiput - took weeks to finally absorb. I live w it and can’t sleep on my back… occipital area and neck were never the same after mono as well as upper back and joints. I take Advil once in a while, am on Cymbalta for fibromyalgia finally diagnosed but it doesn’t help. Also have Menieres and tinnitus. Good luck, everyone is different, maybe you’ll find something that works. Stress contributes greatly but I believe there must’ve been some EBV (Epstein Barr virus that causes mono) nerve damage when I had mono.

Thanks so much for responding.

I, too, was diagnosed with occipital neuralgia after suffering for 2 months with extreme, flaming pain that started at the back of the head and radiated to the crown. The pain was so bad that the crown of my head was tender to the touch. The neurologist prescribed Qlipta, Nurtec, and Ubelvy; none worked. I had to sleep upright with an ice pack. This went on for two months without relief; the night was always worse. I was referred to a headache specialist who identified the symptoms as classic occipital neuralgia. A nerve block was administered, and I had temporary relief for four days, and then the pain returned. I was prescribed a low dose of Gabapentin. Once the dose was increased to 300 mg, I had good pain relief for 3 weeks, and then the pain returned. I have been on 600 mg for 1 month now, and the pain, while still present, is tolerable. I would say it's 2/3 on a scale of 1-10. I am scheduled for another nerve block next month, and I am hoping that, along with the current dose of Gabapentin will eliminate the pain. I also did 4 weeks of PT which has provided some relief.

@med216 I also have ON. My pain is just like what you described plus other things. The pain can move down the face, around the eyes, to the ears, and you may think you have a toothache.
Mine started with my left eye temporarily losing sight 3 time within 2 days.
After finally being diagnosed correctly I started P/T. There they taught me how to stretch my neck muscles. I also figured out that my new bed pillow was to blame. It held my head it a bad position.
I’m better now, but still get episodes of scalp and neck pain. When it happens I stretch my muscles.

I wish you the best.

I have been to 4 neurologists. 2 said I had ON and 2 said I didn’t. Where is the best place in NYC to go for an answer?

I also was diagnosed with Occipital Neuralgia and was prescribed some of the same meds and a couple others which didn't help. My neurologist then prescribed Topiramate 100 MG 2X a day and it has helped tremendously. Every case is different of course but this certainly worked for me.

I have self diagnosed. Have severe stabbing pain radiating up the back of my scalp and then onto my left forehead. Currently trying to treat with Advil and gabapentin without much success. I think next step would be to see a neurologist. Interested in hearing from anyone who has experience with this condition and especially someone who has had it treated successfully.

I have for over 20 years and have done everything from botox, steroid injections, and was on the brink of getting a pain stimulator when I was put on Eliquis for Afib and it helped me like crazy! I was like what?? because I couldnt take anymore advil which was my go to and realized when I had to get off of it for 3 days for a lumbar procedure that it came right back with a vengeance, I even called my neurologist to tell her my conclusion because somehow it helps me??? im thinking its advil x 50 which is why cant take advil?? maybe advil thins the blood? so i am doing much better but have horrible back and every time i have to get off Eliquis i suffer for a week because it takes a while to build back up. I was told by my neurologist that people have occipital nerves running over their skull in 3 different ways depending on how you were born - 1 under muscle (yes muscles on your head) 2 over your muscle and 3 through your muscle so several things cause your pain depending on how you were born. Also, sometimes the two holes that your occipital nerve feeds up to your skull impinges the nerves which is my case and that causes the horrific headaches behind the ears and above and behind.... GET A GOOD NUERO that specializes in migraines. yes i thought that too but headache drs know more than the others about Occipital Neuralgia good luck to because it is a chronic disease unfortunately