Occipital neuralgia

Yes, I’ve had a NALU stimulator for several years. It does hel!

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 hope you continue getting help.

I have for 9+ years.

First, let me say I am so sorry you are dealing with this. The ON pain can be horrific. I do think seeing a Neuro is definitely in order and a wise decision on your part. I was in a motorcycle accident years ago with TBI that left me with both, Migraine and ON - horrific combination 🙁

I don't know if we are allowed to name specific medications in this forum that have worked or I am currently using. I can tell you that I tried several "Nerve Inhibitor" type medications and they were a total failure. I did find a medication that controls the ON and I am allowed to take it once or twice a day, X...x. My Neuro prescribes it. This has been the only thing that "calms" those Occipital Nerves so I don't feel like I am being electrocuted half the time. As for the Migraines, I tried everything he offered, all the preventables, pills and self injections, nothing made a difference in frequency or severity of pain. Because of my age, I can no longer take migraine "abortives" due to chest pain, so I use a pain nasal spray and Ibuprofen for that.

I had a neck injury in the accident, my neck now has arthritis which triggers the ON and Migraines (almost daily). No one wants to live this kind of life, it is frustrating and excruciatingly painful. Everything gets impacted, family, friendships, marriages, career; just surviving from one day to the next is devastating and now at 70 this is no picnic.
I hope that your doctor can help you. I am so grateful for my Neuro. Hoping and praying for the best for you.

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?

I was diagnosed with arthritis in my neck a few years back and a narrowing of a couple of the facet disc, effectively pinching a nerve, but not narrow enough for surgical intervention. I am in almost daily Migraine, the ON is a couple days a week. Something like a cattle prod sensation jammed in the back of my neck and being electrocuted through my skull and spine, it's horrible. My neck has been extremely painful for several weeks, turning my head from side to side is agony. Then the tightness in my Traps comes, up my neck and then to the side and top of my head; the "Monster" is on the way. My day is over, it happens between 18-22 days a month where I can be completely disabled. Dark, quiet, cold room is my refuge and whatever meds I can take to make it stop. It's been like this for the last 20 years.
I think the hardest part is in knowing what is coming, that's why I call it the "Monster", who comes to rip my head and base of my skull apart. On the days things are "quiet" I am trying to get laundry and ironing done, clean my home, get to the grocery, get prescriptions picked up. It is just survival. Without my current med regimen, I probably would not be here. Thanks for checking in with me. 🙂 Kasey7