Occipital Neuralgia

How did the pillow work out?

Had my first nerve block yesterday. I hope it works. I couldn’t tolerate gabapentin side effects. Too many meds I will keep you posted

Had my third one yesterday. I have been getting them every 3 months. They’re not too bad - a pinch at the start. They seem to be about 90% effective for about 3 weeks then I start getting breakthrough headaches. I have a meningioma. The headache is 24/7 and ranges from a 3 to a 7. Those 7s peak and go back to a 3. I take Topamax at night. God luck!

Sorry to hear this. Has your Dr ever mentioned this can be caused due to nerve root issues in your upper cervical spine?

Thank you. No mention of that. I believe h/a caused by meningioma. Had MRI 3 days ago and results received yesterday. I now have a second meningioma. I also have facial paresthesia and intermittent earaches. But headache relief is huge for me. Thanks again!

Ive known the problems of occ neuralgia very well for 22 Yrs, unfortunately. I had the block on this nerve several times and they ended up damaging the nerve which caused it to hurt 10 times worse. Nerves don’t like foreign substances touching them. Also, there’s always the risk that the dr will hit the nerve with the needle and damage it.
My advice is to avoid foods that aggravate the Occ Nerve - caffeine, chocolate, hot pepper, spicy foods, sugary foods, msg, food additives. Don’t color ur hair. Avoid letting your hair brush touch it. Be so so gentle when u wash ur hair. Wear a warm neck wrap that covers the nerve, in cold weather.
I wish both of us some healing there.

Hi Rachel. I too have been having occipital nerve issues. Back in 2018 I was sent to a neurologist and she automatically said it was inflammation of that nerves. So she said a block would help. It hurt so bad I cried hard. It made the pain worse at back my head and neck. Many migraine’s. Drs would have me take daily shots but they never helped. It took 8 long months just to get back to the same level I was before the block on each side. Back of my head. You mention Ablations. I’m curious how those work. I’ve been suffering with this nasty pain back curve of my head past 5 years. I had taken a bad fall earlier that year and hit back of my head on a 2 liter pop bottle. I can’t get my neurosurgeon to listen and pay attention to me bout this. He did do a Cervical Fushion at C4 through C7. Says it looks fine but he can’t explain migraines n pain at back my skull/neck. I have tinnitus screaming so loud past 10 years. If I hold my head down to read and then look up I feel loopy drunk like. I kind of get the feeling like blood supply or oxygen or a nerve pinched tight that when I walk I stumble. A lot. Head fuzzy. It’s a miserable feeling and I tend to lie down a lot and social distance myself from my family. I don’t want nobody seeing me feeling like this. I tried something not on purpose other day but by accident. Instead of taking pain pills as I have been since 15 yrs now I’ve tried the THC and CBD gummies. They help w some pain. But I just don’t wanna get to used to them. I mainly try 2 per day for pain. But I took it round noon and these r 30 min. Acting but I was coloring and had my head down few hours but I never felt any pain relief so 5 hours later I get up and after 10 min. I’m starting to feel the gummy. So that’s how I’ve come to the conclusion that a nerve or blood supply is cut off where I couldn’t feel the gummy’s. So 8 hours laters approx. I started feeling the gummy working. I started getting lil munchie then. So does this sound possible of something being cut off in order to me feeling this way? My head is drunk most of the time and I stumble where I fall. So embarrassing. Headaches are back my head and front forehead plus behind my ears. Does this sound like a ablation situation? I’m starting to loose trust in some Drs. I don’t know if they’re worried bout doing more or just settle for doing that fusion. I need help. I’m begging for help. I can’t do another year of this. How do I get a Dr to pay attention to this ? Even he gave me a shot for migraines and said I shouldn’t have anymore fore good year. Wrong. I have 50 plus a day. I’m sure that Neurologist I saw back in ‘18 knew it was occipital as she said but I was scared to go back cause I got hurt with the 1st nerve block. Any ideas from anyone here? Much thank you and Be Safe Folks.

I get headaches too and often. Once I fell down an escalator (no one ahead of me thankfully) and have headaches ever since. Perhaps a neurology consult may help? Gratefully, Marianne

I had one a month ago. It really didn’t hurt, but it only lasted 2 weeks

I’ve had left side headaches since my 30’s, am 76 now. My doctor says they are migraines but I have had so many weird effects from meds, possibly due to having SLE, Hashimoto’s…long ago, Graves…anyway I just take a Vicodin as I have for years. I’ve had a lot of hits to my head so believe something in my neck may or may not be the cause. Or, after almost going through the windshield twice, a fall down 3 flights landing on my forehead & needed stitches, plus umpteen times of unknown to me at the time…panic attacks in that I didn’t breathe and so passed out. Yep, always hitting my head. While I don’t like the regularly of the headaches I am glad Vicodin works and I do not exceed the limit of the medication.

If younger, I might want to find out more and why about these chronic headaches. My allergy doctor called it chronic migraines years ago. After being diagnosed with SLE, I’m for just treating the symptoms. Thank goodness mine are mostly mild, unlike what you all experience. I wish you all the best. It is an ongoing battle.🙏🏼❤️