Occipital Neuralgia Headache: Terrible pain lasting weeks, what helps?

@pierwell same with me. I did have one, but they might give me a 2nd? just order a new roll
pillow, my days of using my precious down pillows are over. When my headacks begin I think
those pillows give my neck O support. Here goes another stab a help????

@rnlorena yep. one time a financial adviser told us "no one cares more about your money than
you do" this applies to our health, we need to take charge not a Dr. we are only #.
Yes, the Dr. that performed my ablation told me sometimes it helps other times it does not.
I saw no improvement. I might ask my new Dr. if I should try again? please let us know how you
do. At this point I am trying every possible aid, even ordered a new roll pillow, I believe my
precious down pillows are a thing of the past for me; too soft gives my neck O support. Best to you.
Mrs. Nice guy!!!!!

@pierwell Sorry to hear that you had 2 ablations with minimal effects. And I thought the diagnosis of my small nerve fiber was weird. This diagnosis is different than anything I have ever known or heard about. I had head pressure and blurry vision Feb. 17th 2025 and no one could tell me anything after seeing different doctors. Then came head pressure every day. my regular doctor sent me to the pain management and I read they do more than that. First time in 11 months I finally feel like I am getting somewhere. I will be the bull in the china shop from now on when it comes to my health. NO more Mrs. Nice guy. I wish you well! @rnlorena

@rnlorena I’ve had two ablations with minimal effects.

@suszy39

Thank you!

Still hard to believe there´s someone currently writing understanding the everyday struggle with the condition.
How long do you have it? What´s in your opinion the hardest part ?

@lisalucier

Thank you for the warm welcome!

Well, i hope that my condition will be managable in such a way, that it doens´t interfere every aspect of my life; from waking up, laying down. Doing the dishes wrong, beeing to stressed or to lose. Beeing able to set goals for oneself again without having to redefine them every week/month because the condition burns the bridge to the goal. Beeing able to chase the "mind-version" of yourself - how you see and what you´d like to become.

Treatment? A surgery that actually works. Had my third one last week and the overall chances aren´t high that it will help. So relief. I hope for some relief for the mind.

@suszy39 Having had an ablation and they burnt the nerves I would be asking why it didn't help. That is truly strange. I will be sure and bring that up to my Dr. when I see her. My question will be this. If you do an ablation what are my chances of it not working? I definitely will be questioning those things. @rnlorena

@sinyaale Welcome this is a great place to bring your thoughts, suggestions, to fellow folks
who totally understand where you are out. Many good tips, I am flyiing with all of them.

Concerned ON Person

Hi @sinyaale - welcome to Mayo Clinic Connect. The attacks you have sound painful.

Hoping that here you can meet others taking about occipital neuralgia headaches, such as @suszy39 @rnlorena @pierwell @laura1970.

What would you say are you future hopes for your condition and your treatment, sinyaale?

Hi!
Im 28 years old and have occipital neuralgia for the last 10 years. My symptoms are a-typical, slowly getting stronger until they reach 7-10 on the pain scale and last for 14-30 hours. I have those attacks usualy 2 times per week.
Im getting Oxcarbazepine. That helped me to get it down to 1 time per week. Also, for an attack im currently using morphine. Opioids are the only medication that helped me to be pain-free in an attack.