Occipital Neuralgia: What treatments work for you?

@eaoneill4771 You sound like me. doing my exercises every single day. Warm my neck up in the
morning, I can acutally see the range of motion improve. I also was told by many other sufferers
to take Vit. B-2, (Riboflavin), Magneisum 400mg (both at night) Vit D plus Omega. Takes a couple of months to see but I do believe it is helping I will do just about anything to help myself with this pain. Have not used any ice packs or hot water bottles for three weeks. Love Love Love my clincial massage, such a relief. Thanks for your comments, I listen to all of you who know how we all suffer. Warm Regards Susie Fr. Norhtern Calif.

@eaoneill4771 So sorry about your suffering, I have never had an accident but have suffered for twenty years with ON. The problem now is they are worse flare ups. I have been taking trigger shots for some time, now they will start nerve block Feb 12, 2026. My pain Dr. is so very good at giving me shorts I am looking foward. I have switched to a cerivcial pillow about size of my forarm, my reg pillows were killing me. I have a book "Treat your own neck" by Robin McKenzie been around long time but still works. I do exercises every day like brushing my teeth. My othert Dr. sent me to Clincial Massage, wonderful relief. One day at a time, wishing the best with your nerve blocks, we will compare notes when we get them!!!!! Susie Fr. Norther Ca.if. Fellow sufferer.

@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.

@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.

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

Long-time ON sufferer with dry eyes also. I just want to let you know that nerve blocks can be miraculous, so if you have a big event coming up you might want to get the shot. I had high hopes for Duloxitine but couldn’t tolerate even the lowest dose.

@jmb73 I very recently found out I have occipital neuralgia. I was having head pressure. I went to several Doctors where I live and got no answers so I researched Houston Texas. One because they have a ton of Neurologists and Neuro Opthalmologists. So I drove to Houston on the 17th of August and I had a neurology appt on the 20th. I had a neuro-ophthalmology appt for Sept 29th but I told the girl I had been dealing with this for six months. I happened to luck out and I got a call while I was there and I got an appt for the same day as the neurologist. He did not diagnose me but he was good. Offered me haldol infusion, duloxetine which is an (antidepressant) and nerve blocks. He gave me his notes and that afternoon I saw the neuro ophthalmologist. She is exemplary. She diagnosed me with the occipital neuralgia and gave me gabapentin 100 mg three times a day. I drove home the following Sunday and my med came in the mail on Tuesday. After having head pressure for 6 months the gabapentin is working. I couldn’t take the duloxetine because I took antidepressants in the past and they worked for depression and hot flashes however, I had horrible dreams and I acted out one and fell out of bed. It was a constant battle. Therefore I will not take them. In February it all started with head pressure and blurry vision. Then it was feelings near my eyes then surrounding my eyes. I now have dry eyes. Occipital Neuralgia can cause dry eyes. I have had some head pressure but nothing like I was having. I also have fleeting head pains. I may have to have my gabapentin increased but I have only been on it for 10 days. I can’t take antidepressants, didn’t like the idea of a nerve block or haldol infusion. I hope you get something that helps. Please let me know how you are doing. @rnlorena

I have to sleep on my right side bc of the occipital neuralgia on the left, and I use two very soft pillows. I think the brand is Fluffy, and I use Blissy silk pillowcases. Good luck!

Can I ask what type and brand pillow works for you. I feel like I’ve spent way too much money testing pillows and haven’t found anything that works. I feel like my migraines start at my occipital area. Thank you!

Hi @blueskies10, it sounds Iike a very difficult time for you. I'msorry and am hopeful you've had some settling after taking gabapentin steadily with increased dose. It may take time to provide relief. In addition to nerve medication, what has worked for me are very basic tools to work alongside, like diaphragmatic breathing, mindfulness exercises, physical fitness and joyful, funny distraction. I know it sounds crazy, but the more you direct your brain elsewhere, the more likely your brain can stop "accessing it's pain network". What sorts of distraction do you find enjoyable? Do you have hobbies you enjoy or phone calls to someone who makes you laugh?