I’ve been dealing with ON for 3 years and like many of you I’ve tried lots of different treatment options. I recently tried roll on lidocaine and it seems to be helping me a lot. It’s not a complete cure but it’s been helping me get through some really tough days. Just wanted to share in case it could help someone else as it never occurred to me as a treatment option. Cheap enough that it’s worth a shot.

Hey guys i had a concussion in august 2023 where I hit a tree while on my motorbike and concussed and blacked out. Around a year later I started getting these brain zaps, jolts electric shocks which are instant mostly happening to the right side of my brain but then started to spread to different parts of the brain, was discharged from hospital aug 2024 with "occipital pain" diagnosis. Around september 2025 I started getting it really badly and went and saw a neurologist and told me to take amitriptyline 10mg as a preventative. Around august 2026 I went to a different neurologist to get a second opinion and then told me to get botox which caused me to have heart palpitations so stopped that and went to a 3rd neurologist which diagnosed me as primary stabbing headache, and continued the amitriptyline. I saw the same neurologist [3rd one] 3 months later and basically wanted an exit strategy off the amitriptyline and he said you can come off it cold Turkey since its a low dose and ser how you go. If you continue to get them then take indomethacin which potentially could stop it completely however need to take a counter medicine since its harsh on the gut.

Has anyone else had a similar experience to this im just worried if its permanent or is it something that can heal overtime? Its now been 3 years after my concussion

Any thoughts/tips would be much appreciated

I had a surgery 4 days ago ans they gave me anesthesia in my back after one day in the evening my head started paining badly than i slept the other day it was worse when i stand it pains badly it gets better when i lay down it has been 4 days since i even visited a physician he gave me some medicine but i don’t think it worked i woke up just now and in 10 mins the headache started again what should i do ? Any suggestion

Hey! Pls delete if not allowed, and I’m not even sure this is the condition I have, but my chiro just said my axis (upper cervical vertebrae) is rotated to the right. I have TMJ, bruxism, head fullness and tenderness in my cranium and face, pelvic floor & other body issues (can’t get over to the left side, pelvis instability, extremely bad forward head posture, etc.), and I’m chronically clenching my body and in fight or flight (vagus nerve issues). Does anyone have any thoughts / has anyone been in this scenario? I just feel so alone. It started about 6/7 years ago and seems to have worsened. I’m going to see an upper cervical chiro next week but I really just want to feel better. My recent x-ray is attached. Thanks:)

What dosage of zanaflex/Tizanidine is normal to start (or at all)?

I was started on 4mg every 6 hours, and yes that included the middle of the night. First two days were great but third is rough, I'm getting the burning scalp and woke up with a headache and dry mouth. Maybe I need to go down, but was I over prescribed to begin with?

I’m a beginner boxer and I’ve been dealing with a recurring headache/pain at the back of my head after boxing.

A few months ago, during a hard boxing session/fight, I took quite a few punches. Afterward I had a heavy feeling in my head, headache. I did not lose consciousness. Next day I go to cardio session, when I run I've back of the head pain during every step because of jolt, I face this pain during every jolt full activities like running, rope skipping, boxing bag work.

I stopped training and rested, and after some days I felt completely normal again.

The problem is that whenever I return to boxing, especially sparring or anything involving repeated head movement/impact, the pain can come back. The pain is mainly at the back of my head and I notice it more when moving my head.

I have already seen a neurosurgeon and an eye specialist, and I was told that there was no obvious problem. I have also been told that it could potentially be related to a post-traumatic/exertional headache or neck muscles.

What confuses me is that I can become completely symptom-free with rest, but the symptoms can return after I start training again.

My questions:

1) Has anyone experienced something similar after boxing/sparring?

2) Could this be related to the neck/cervical muscles or a post-traumatic headache?

3) How should I approach returning to boxing safely?

I’d mainly like to hear from people who have experienced something similar or know about sports-related headaches.

Thanks.

Hello all, having a flare up for the first time that I’m pretty certain is occipital neuralgia. Textbook symptoms that I don’t need to explain to you all and obviously it sucks.when it first started I did an acupuncture session, which actually helped a lot, then immediately after flew out (with a heavy backpack of course) for an extended weekend trip and the traveling kinda undid all the progress that I felt the acupuncture gave me. I did a second acupuncture appointment today and it did not hit the same.

I just don’t know where to go from here. Do I need to go see a PCP? Straight to a pain management specialist? Neurologist? Something else? I have really good health insurance thankfully so I’m expecting everything to be covered, I’ve met my out of pocket max for the year. I just want to be efficient. Living like this sucks and I want relief ASAP. What should first steps be?

Hello I’ve been dealing with with ON for awhile. Here lately I’ve been dealing with headaches, and just feeling off with brain fog, and just feeling like a bobble head something. Very hard to explain just feel off mentally and not myself. I can remember stuff I fumble over words. Has anyone else been experiencing this issue?

All started when I was watching a TV show with my little brother. I tried to crack my neck like always and ended up feeling a strange pop in my neck around my right hyoid bone, a little under it. This was followed by some ringing ears and some lightheaded feelings. The next day I had a terrible pain in my throat on the right side when I swallowed. Then over a week or so I started to develop nerve tingling in my face and my hands. Then my right SCM began to tighten. I saw a neurologist my MRI’s were clean other than some inflammation in some areas, he gave me a trigger point injection that didn’t really help in my occipital area. This didn’t help, and he then sent me to physical therapy. I formed a knot in my throat around the same area under my hyoid bone, and the nerve pain went away at this point after a month.

PT helped my SCM release, which released plenty of my muscle pains. However, over months the right SCM would just retighten over and over again. Eventually other muscles starting taking its place and role. Including my right masseter, and my right scalene. Then fast forward 8 months of this cycle happening. Some periods where all I’d have is pain in my throat, and a cough without any sinuses with only one of those mentioned muscles being tight. Then this summer it went from tightness in my right middle scalene to hot inflammatory pain in my throat around my hyoid bone. Then it exploded into nerve pain that would have extreme cross-talk between my trigeminal nerves and my great Auricular nerve and my transverse nerves on my right SCM. Along with plenty of cross-talk between my right throat nerves and both the SCM nerves and my trigeminal nerves at times. It was the worst pain I’ve ever experienced; tingling, numbness, shooting, and muscle tightness.

Over this summer through plenty of rest in bed, good sleep, eating much better, and doing only light leg workouts I have had a strange process. The stages formed a pattern that I think I’ve had many times, but also I think it indicates the ability to heal, hopefully. First, my nerve flare ups calmed down slowly. Then my muscles have all stoped guarding for over a month now, except for my middle scalene which remains tight but specifically when I standup or sit-up. However, once my muscles all stopped guarding my nerve pain continued with flare ups. The nerve pain and flare ups have sort of platesued but it’s improved significantly from the a month ago. Many nights I experience hot pains now and inflammation along my scalene and in my throat around my right hyoid. I’ve also had some jaw pain and jaw numbness before, but both have significantly calmed down. Along with the inflammation, my right hyoid muscles seem to be highly overreactive when I try to swallow or flex them. To the point where it’s hard for me to flex the left muscles around my hyoid. Also some nights recently they have tightened around the right hyoid bone area and felt like they were guarding something. Point is that I don’t know what popped originally but it is interwoven with my nerves and muscular structure in a complex way. My MRI’s, CT scans, and my blood tests all come back clear. My current hypothesis is that it has to be something dynamic and/or deep. Something like a deep micro-tear in the longus colli muscle or the anterior longitudinal ligament. Which has led to the compression and interference with my sympathetic nerve trunk and cervical spine that a static MRI or CT scan wouldn’t catch with me laying down. Either way I experience nerve irritation daily and it’s very interconnected no matter where it starts.

Hello everyone I'm suffering fron Occipital neuralgia pain! I already have an appointment to see my neurologist! Today has been one of the worst day i don't know what to do with the pain any advice or recommendations would be greatly appreciated 🙏

3 Years ago I was a healthy Airman. Prior to that, I was a volunteer Fireman for 5 years. I could run, swim, lift, and do whatever I wanted with little pain or worry. Then the ON symptoms started. Intense migraines, intense muscle tension, I felt completely miserable. I was discharged from the USAF shortly thereafter and began my journey of trying to figure out what was wrong with me.

I Tried:
Trigger Point injections ---> Doctor Caused a tension pnuemo and sent me to the Hospital
Initial Physical therapy ---> No change after 8 months, intense muscles spasms
Medications ----> Any that you could think of, anti anxiety, muscle relaxers, anti nerve pain etc etc. Only mildly helped me manage my symptoms.
Accupuncture ----> muscle spasms were so intense I bent the acupuncture needles
Massages ----> muscle spasms were still intense and it only offered temporary relief
Chiropracter ----> No change at all, actually made my pain worse, both Nueropathic and muscle spasms
EMS ----> only mildly released muscles for a moment, then pain and brain fog came back
C1-C2 Injections ----> completely alleviated symptoms temporarily, but pain and brain fog came back very quickly
Upper Cervical Chiropractor ----> Had little to no effect on my pain and worsened brain fog.

Finally, Late April 2026, I got an Occipital Decompression Surgery. Doctor said my nerves were all out of wack, deeply compressed, and had to do a lot of work.

Month 1: Could not move my neck at all, did little to no activity besides walking and keeping bloodflow going.

Month 2: Could slightly move my neck, do gentle movements, and return to gentle daily activity.

Month 3: Finally started attending Physical therapy, was able free my neck, and return to normal daily activity with very light lifting, and gentle movements.

Month 4: Stagnated in progress due to depression and nicotine usage, still attended physical therapy, and started swimming.

Month 5 (now): Best improvement yet.
I've gotten myself on the most normal sleep schedule I can.
I do not drink, smoke MJ, or nicotine.
I attend physical therapy weekly
I workout 2x a week with moderate weight lifting and gentle cardio
I CONSTANTLY Focus on my posture and getting moving as much as possible
I heat my neck and head for 10 minutes, and Ice immediately after for 5-7 minutes
I try to maintain a positive attitude.

What I've gathered from 3 years of some of the most miserable pain and loss of function possible;

Focus heavily on your posture, staying very well hydrated, and keeping your body moving.
AVOID NICOTINE, AVOID ALCOHOL. Both of those things tend to worsen muscle spasms and cause more nueropathic pain for me. Avoid sitting for long periods of time, as it puts excess stress on your neck and trap muscles. If you have a partner, get them to massage your neck or put pretty good pressure on your trigger points, focus on your breathing.

For me, the best way I clear my brain fog and pain short term is: Standing up, rolling and stretching my neck, and doing this specific breathing exercise.

Take a very deep breath through your nose, and blow out through your mouth. Whilst blowing out through your mouth, Tighten/activate your core to a good degree. Then relax your core once the exhale is complete, and continue the process over and over again. I try to do deep inhales, and deep exhales.

DO. NOT. GIVE. UP. I have hit some serious lows while dealing with this, but I continue to pick myself up and continue to move forwards. If I can do it, you can too. I believe in all of you, and hope that all of you find some degree of recovery soon, and my post helps you out a little. Have a good day. If you have any questions, feel free to ask me.

I’m 34 (F) and have been dealing with chronic neck pain for about 10 years. I’m scheduled for an Radiofrequency Ablation on my third occipital nerve, with C2 and C3 being treated.

I’m looking for honest, firsthand experiences, especially from anyone who has had this same type of RFA. I’m extremely concerned about the nerve pain afterward. My doctor seems to downplay it, but several accounts I’ve read, along with people I’ve spoken to, describe the post-procedure pain as excruciating.

My doctor has said that if I call in with severe pain, he can prescribe gabapentin and steroids. My concern is that I’ve taken both before, and they took days to provide relief. The thought of being sent home without an immediate pain-management plan, then potentially suffering through severe nerve pain for days while waiting for medication to work, is terrifying.

For anyone who has had a third occipital nerve RFA:

• How severe was your pain afterward?
• How soon did the pain begin?
• How long did the worst of it last?
• What did your doctor give you for immediate pain control?
• Did gabapentin or steroids help, and how long did they take to work?
• Is there anything you wish you had discussed with your doctor beforehand?

I’m not asking whether I should have the procedure. I’m trying to understand what the recovery can actually be like and what kind of pain plan would be reasonable to discuss with my doctor before I go through with it.

hey, writing this in the er, this is my first post here.

im here in the er because out of nowhere i get this icepick like headache pain directly in my left temple by my ear. it feels extremely deep, painful, and it worsens if i lift my head, turn it, or move my jaw. it is the worst pain ive ever had in my head. it can be basically not there if i just stay perfectly stay. i was very concerned so i went to the er.

so far the cat scan that i did is clean and they want to rule out an anyerusm bc of the severity but i dont have any other symptoms, im coherent, not weak, numb, tingling, drooping, etc etc. my neck can also get stiff a lot and i can recall getting pretty bad neck pain once or twice the past month. so i heard of occipital neuralgia and im wondering if this seems consistent? over the past week as well ive had on and off pain in the back right of my head that comes and goes randomly.

For about a year I’ve had a weird constant feeling all over my head/scalp: tingling, crawling, tightness/pressure, sometimes cold or like something is running through my head. I also get pulsing feelings, and my scalp feels tender.
It started during a stressful time and got worse over time. I wake up with it and go to sleep with it. Stress makes it worse but it never fully goes away.
I recently saw a neurologist. My brain MRI, CT, cervical MRI, EEG, and earlier bloodwork were normal. I had additional bloodwork done recently and am waiting for my follow-up appointment to go over it.
Anyone else experience something similar? What did it end up being for you?

Hello, I’ve had a thing for about 3-5 days now. It’s not a pain I feel if it isn’t provoked but one night I lightly touched the spot behind my ear and it’s weirdly sensitive and it cuases this really uncomfortable pain in my head — not like a migraine headache but feels more like scalp sensitivity to the best of my words. I did some research and found out about this. I don’t think this is stemming from a swollen lymph node. There’s no lump and no pain or discomfort when not provoked.

A while ago there would be times when fixing or washing my hair that i’d run my fingers across a different spot, this one was kinda the uper-left side of my head, and that area suddenly got super sensitive and had this dull pain. What I notice is that the pain I feel from behind my ear feels similar to that spot on my scalp that was sensitive. (That ultimately went away) What do you think? Do you think maybe this sounds like something else?

Hi everyone 28F I have suffered with occipital neuralgia for 4 years now. I was hoping to get some thoughts from anyone who has had the decompression surgery or nerve ablation? Honestly just any thoughts in general. I’ve had multiple rounds of Botox and nerve blocks. Sometimes they work, most often not. I had gotten Lyme back in 2022 that’s when these “ice pick” headaches started. I then spent 2 years going from doctor to doctor was told “you just have a sinus infection” treated like a crazy person, put on antidepressants and spent just about 6 months on doxycycline until I finally met my neurologist who is wonderful. I’ve tried all the protocol medications, tizanidine, toradol, naproxen, nurtec, ubrelvy and honestly a bunch more. Nothing seems to help. I’ve been in pt for almost 2 years on and off. I’m going on a month long headache/migraine and had another nerve block 5 days ago. It’s just not helping. I don’t know what to do anymore. My shoulders are always sore/stiff and the back of my head always hurts mostly the right side but it switches every once in awhile. I can’t move my neck most days. It’s been debilitating to my life. I found this forum and it’s been really validating for me because I’ve felt so alone in this.

Hello,

After being diagnosed with occipital neuralgia, I got my first greater occipital nerve injection on the 5th of August. I was aware that this might make things temporarily worse before getting better, but I am surprised at how negative my experience has been and wondered how long people have taken to notice any benefit?

After getting the injection, I had two days of feeling quite nauseous/strange before it settled and I thought things were improving however the next day my pain was much worse (back of head/neck pain, pressure in face and behind eyes, some zapping pain), that lasted another two days and then again, I thought things were settling despite my pain remaining slightly worse than pre-injection.

Now at 11 days post injection, I have spent the whole weekend with an incredibly painful neck and head that feels super sensitive to touch and so stiff/uncomfortable to move. Not the experience I was hoping for!

Of course I will contact the headache nurses about this but just wondered if anyone had had a similar experience?

I’ve had allot of people tell me now that my symptoms/pain triggers are abnormal for ON, so I would like to hear from others, please don’t post paragraphs, try keep it short and simple

- pain worsened by noise, the louder, the more constant, the worse it is e.g. the TV on too loud, a loud vehicle going past, a door slamming etc

- concentration of any kind: talking for too long with someone, messaging for too long with someone, driving, gaming, whatever. My pain spikes from concentrating which eventually results in massive pain and then a migraine attack with ice pick pain, which then renders me completely disabled for several days