Occipital Neuralgia: What treatments work for you?

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?

Tried everything still in Pain!

Has anyone tried Nerve stimulation for Occipital Neuralgia?

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.

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.

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 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 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 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 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?