Occipital neuralgia

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

That sounds like occipital neuralgia. Definitely see a neurologist to be sure. It usually subsides but I’ve suffered ten+ years. Tylenol, Celebrex and ice packs are my salvation.

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.

My husband saw a neurologist for similar head pain. MRI showed two extra bones floating in his forehead area. Dr said it could cause these pains. It is far more painful if he allows his head to bend down at all. No pain when he gets up but starts immediately after getting up on the morning. He prescribed a couple of drugs which he cannot take . He was referred to another headache neurologist which he will see in July. Will ask about occipital neuralgia.

Has anyone tried Nerve stimulation for Occipital Neuralgia?

Tried everything still in Pain!

Hi, @jill935 - welcome to Mayo Clinic Connect. I moved your posts here so that you could talk with others with occipital neuralgia:

- Occipital neuralgia https://connect.mayoclinic.org/discussion/occipital-neuralgia-3/

I'm assuming you have this diagnosis as you were asking about nerve stimulation therapy for this condition and mentioning you've tried everything but are still in pain. I'm sorry to hear that.

Hoping that in this discussion you can connect with members such as @pierwell @queenie2030 @jakedinger @tessie69 who have discussed occipital neuralgia as a diagnosis they or a loved one have, or for which they are being considered/tested.

I'm guessing you are considering nerve stimulation? What have you read or heard about it so far?

@judic0927
I was sent to physical therapy for ON. They had me doing all kinds of neck stretching movements. It helped, but you should determine why you have it. I bought a new pillow that pushed my head up too high, and that’s when it started.

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!