Occipital Neuralgia: What treatments work for you?

Hello @champton (and all migraine/occipital sufferers) -

Thank you, @champton, for reaching out and sharing your health journey with chronic occipital and migraine pain. What a journey it's been for you, I'm so sorry for all you've been through. I truly understand the hardships and misery.

It might help answer your questions if I bring you up to speed. A lot has changed since I wrote the post you have replied to. I was struggling back in 2019 and had not yet gone to Mayo's Pain Rehabilitation Center for help. I had tried every drug, and embarrassingly felt some of the ways you describe. I tried injections, ablations, infusions, therapies, acupuncture, special pillows, ice, heat, etc. Ultimately, none of it stayed working for me because I was in a chronic state. My migraines, among other diagnoses like neuropathy, neuralgias, back and neck pain, stopped responding to traditional treatments. My stress levels, anxiety and depression elevated, and as a result deconditioning set in as did distancing myself from being social.

I think you have hit the nail on the head @champton with your journey in the "cycle of pain". I was there in the same cycle and feel for you and anyone going through the motions just hoping for that sweet spot of help.

Fast forward to now - I am grateful to have reset my life through what I learned at Mayo PRC and how I have applied the principles and tools over these past 2.5 years. It's taken a lot of hard work. Yep, I still have all my "stuff" = symptoms, flares, pain, but I manage it all better through things like reduction of chemicals, stress-management, deep breathing, meditation, mindfulness, gratitude, distraction, exercise, humor, moderation and balance of activity and rest, sleep hygiene, healthier diet. It seems like a lot and may be a little overwhelming, but small steps can make big changes when it comes to self advocacy and management. Honestly, I overdosed on doctors and depending on them to make things better for me when in fact I needed to learn how to help myself through life-style changes and shifting mindset.

I would love to be able to tell you that ablations did it, or migraine injections did it, but none of stayed helping me. It was all kind of like band-aids, you know? That is not to say these treatments can't help you or someone else. Everyone has the right to their own health journey, but in some cases the more fuel you keep pouring on the fire, the louder the fire burns.

I'm happy to see you've been receiving support from other members. If I can help further or answer questions about what I gained from rehabilitation, please do not hesitate to ask. Stay strong, keep the faith, and know that hope is important to hang on to. I'm rooting for you!

So sorry you’ve had to endure all that. Just suggestion, as learned thru posts many different things can be happening same time, have they evaluated for POTS or orthostatic intolerance? as many of the things you describe are what I experience with that. Hope this helped and you find healing answers soon🙂

All one sided headache problem folks, please check out Cluster Headaches. They are called “clusters” because they come one after another usually. More severe than migraines if you can believe that. Always involve only the same side of head. Teeth, ear, jaw, all will be in hard pain. The cure is O2, yes Oxygen. At first sign of one start breathing deep and long breaths pulling air thru your nose, exhale thru mouth.. Do so until pains subsides. If this fails see you doctor and get RX for E-tanks of oxygen. Set flow meter to 8 to 10 (a lot). Clusters are the worst headache imaginable. And so simple to eliminate. Best to all. And get those shoulders out of your Ears and try relaxing some! Treetop

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.🙏🏼❤️

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

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

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.

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.

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!

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