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

I’ve posted several times about my decade-long battle with it. I take Celebrex and Tylenol, and use ice packs several times a day.

Has anyone tried Nerve stimulation for Occipital Neuralgia?

Reach out to different types. I had trigeminal neuralgia, and it was the most excruciating pain EVER. Just took me DOWN. Full stop. To bed with a narcotic. Turned out it was due to a cracked wisdom tooth that X-rays and really expensive dental people could not detect. When my tooth literally split in two, it stopped. I experienced it again, and the bottom wisdom tooth was pulled. They DID find it was compromised!k the doctors don't confer with the dentists unfortunately and they should!
I also get occipital, but for me, it is more complicated because my cervical spine is compromised. I also have weak eyelid muscles (inherited), and I've had some eyelid muscles tucked, and it stopped on that side. The other eye needs to be done. Impinged nerves from places that no one critically looks at. Don't give up -- keep PUSHING!

I’ve had ON for a decade and have tried everything my neurologist knows about. NALU stimulator, Celebrex and Tylenol are my defenses against daily headaches.

I’ve had migraines for 40+ years and FINALLY received relief when my neuro put me on Quilipta. Almost to the day of starting that, I began experiencing a new type of headache that I thought was a tumor behind my eye. Grateful it isn’t a tumor. After significant frustration and multiple specialist referrals, I returned to my neuro, who diagnosed me with ON. She has referred me for PT, with dry needling and possible nerve oblation. My first session was terrific and all he did was deep muscle massage. I am hopeful!

I have for 9+ years.

Hi, @kasey7 - welcome to Mayo Clinic Connect. I appreciate your compassion and empathy for @judic0927. Sounds like you've been on a super challenging road yourself, with the TBI from your motorcycle accident leading to migraine and occipital neuralgia.

As long as you are not giving another member medical advice and instead sharing what has worked for you, you are welcome to share the names of medications that have or have not helped you. Here are the community guidelines, if you want to have a look https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/.

kasey7, you talked about arthritis in your neck triggering the ON and migraines, almost daily. How did you find out that this was what was happening? Do you have distinct flare ups of the arthritis in your neck where you know the symptoms of ON and migraine are coming?