Occipital Neuralgia: What treatments work for you?

I have it. It actually got better and stayed better for years and then I had surgery to remove my uterus. As soon as I woke up I asked for pain meds because my head hurt so bad. And then it stayed that way for a year. Now it just hurts when it gets aggravated by being touched. I suspect the base of my head was resting on something during surgery and that is why it came back after surgery.
I believe my ON was caused by a fall off a horse.

Hello all. I have been suffering with headaches and neck pain ever since a ski crash about 2 years ago. Have been on meds like gabapenting for over a year now. I was finally diagnosed with ON Dec of 2024 and have tried nerve blocks, trigger point and botox a few times (only the numbing part of the nerve block has worked, the steroids not so much). I have also been on Physical therapy, have tried chiro, acupuncture, massage.. Only PT, acupuncture and massage has given me some relief that last for days..

Severity of my headaches depends on the day but I get worse with physical exertion or concentrating. I have unabated headaches non stop 24/7. Scalp is very sensitive and feels burning to the touch along with other symptoms like dizziness, nausea etc. The worse part of my pain started in the left occipital side but since April of this year has progressed to the left side of my head right around the top of my ears and also feel it in my left shoulder. I'm desperate and want my life back. I want to be aggressive and ask if I can do more invasive treatments but idk what.. I have looked in to nerve decompression surgery(done by plastic surgeon), cryoneurolysis, RFA, prolotherapy or nerve hydrodissection and idk what else. I trust my neuro and grateful I was diagnosed early but I need something else. Having pain every single day along with other symptoms taking a toll on me

@bumble81

I had similar experience after carpal tunnel surgery. When being under anesthesia, I think they moved my head and I started having symptoms of ON again. I have been treated for this condition for the past year. I don’t want to take anti seizure med the rest of my life so I am waiting for a nerve block.
I can say that I have taken multiple falls, rear end car accidents, and hitting my head in gymnastics as a child so I believe the nerve gets damaged from all the trauma.
Not sure but it seems logical that this would have started after the nerve gets worn down. It was so painful, I almost lost control driving. It usually happens when I am looking up.
PT helped me strengthen my neck and relieve some pain. Ibuprofen is the only thing I can take as I wait for the nerve block. Ice helps if you can stand it on your skin.

@mikelmrns
So sorry for your suffering. I had my when on the computer for a long time, and concentrated driving. This of course was an onset of my symptoms. I am awaiting my nerve block too. Stress seems to aggravate it. Trying some neck exercises where the PT has shown to pull on either side of your face with light intensity can help relieve some discomfort. It will strengthen your muscles in your neck. I am looking to try acupuncture too. I did change my diet and it has helped with inflammation. Turmeric and ginger help with inflammation, and just get away from prepackaged foods. No preservatives, food dyes, etc. whole foods, prepared with simple ingredients can help keep inflammation down. You will feel better too. If you like bread, try sourdough. If you’re a pasta person, make it of find organic. It does make a difference in inflammation of your joints. I am a retired skier, my knees feel better, and I don’t wake up in pain like I used to. Just try it, of course exercise is great for your stress levels. Even small amounts can help your mental health. Good luck.

Hello all. I have been suffering with headaches and neck pain ever since a ski crash about 2 years ago. Have been on meds like gabapenting for over a year now. I was finally diagnosed with ON Dec of 2024 and have tried nerve blocks, trigger point and botox a few times (only the numbing part of the nerve block has worked, the steroids not so much). I have also been on Physical therapy, have tried chiro, acupuncture, massage.. Only PT, acupuncture and massage has given me some relief that last for days..

Severity of my headaches depends on the day but I get worse with physical exertion or concentrating. I have unabated headaches non stop 24/7. Scalp is very sensitive and feels burning to the touch along with other symptoms like dizziness, nausea etc. The worse part of my pain started in the left occipital side but since April of this year has progressed to the left side of my head right around the top of my ears and also feel it in my left shoulder. I'm desperate and want my life back. I want to be aggressive and ask if I can do more invasive treatments but idk what.. I have looked in to nerve decompression surgery(done by plastic surgeon), cryoneurolysis, RFA, prolotherapy or nerve hydrodissection and idk what else. I trust my neuro and grateful I was diagnosed early but I need something else. Having pain every single day along with other symptoms taking a toll on me

Hello all. I have been suffering with headaches and neck pain ever since a ski crash about 2 years ago. Have been on meds like gabapenting for over a year now. I was finally diagnosed with ON Dec of 2024 and have tried nerve blocks, trigger point and botox a few times (only the numbing part of the nerve block has worked, the steroids not so much). I have also been on Physical therapy, have tried chiro, acupuncture, massage.. Only PT, acupuncture and massage has given me some relief that last for days..

Severity of my headaches depends on the day but I get worse with physical exertion or concentrating. I have unabated headaches non stop 24/7. Scalp is very sensitive and feels burning to the touch along with other symptoms like dizziness, nausea etc. The worse part of my pain started in the left occipital side but since April of this year has progressed to the left side of my head right around the top of my ears and also feel it in my left shoulder. I'm desperate and want my life back. I want to be aggressive and ask if I can do more invasive treatments but idk what.. I have looked in to nerve decompression surgery(done by plastic surgeon), cryoneurolysis, RFA, prolotherapy or nerve hydrodissection and idk what else. I trust my neuro and grateful I was diagnosed early but I need something else. Having pain every single day along with other symptoms taking a toll on me

@mikelmrns
I go through the same thing, before my doctor said that I had this type of headache I thought I was going crazy. It’s difficult when noise, smells, cold, concentration, over exertion and especially stress trigger it.
Sumatriptan helps to break the cycle for a bit.