r/Occipitalneuralgia

Hi everyone. I’m looking for advice from people who have gone through something similar. Over a year ago, I went through a difficult relationship situation that triggered intense anxiety, regret, and stress. About six months ago, I began experiencing constant head pressure, a tight band-like feeling, heavy head, very stiff neck and shoulders, pain in my temples and behind my eyes. These symptoms are present throughout the day but disappear when I’m asleep. Cooling my forehead sometimes helps distract from the discomfort. I also take zolpidem, Ambien, for sleep. Strangely, after taking it, my mood becomes elevated, more talkative and active, my personality changes, and surprisingly, the head pressure and pain almost completely go away. I’m not sure what that means. Right now, I’m trying to help myself by going to the gym, stretching, and doing light cardio every day. If anyone has recovered from similar symptoms, I’d really appreciate hearing what helped. Thank you.

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 🙏

Hello I know this has been asked many times. I have been miserable since February but I have yet to sched an appointment and get a CT scan to find out if i have ON. Does anyone have these symptoms?

edit: *tender/sensitive scalp but better than before

*dizziness when pain is so bad

*ear ringing whether it's right or left sometimes

*goosebumps on my head

*nausea here and there

*upper abdominal pain but this started happening only months after my first flare ups in February maybe because of anxiety and now maybe i have acid reflux

*something weird in my eyes i cannot explain what i feel just weird and not normal at times

*squeezing head pain lower back and sometimes pain radiates on right top (and throbs) of my head and sides

*eye pain sometimes or stinging pain

*neck pain sides and or back too like feeling of strained neck

*leg weakness sometimes during massive flare up

could this be Occipital Neuralgia? Can someone please tell me your story when it first started occuring? Thank you and may we all be healed.😭🫶

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?

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.

Anyone experience intermittent zapping/pressure that feels different from their normal migraines?
I have chronic migraines and am under the care of neurology, but lately I’ve been experiencing something that feels very different from my usual migraines and I’m curious whether anyone here has experienced something similar.
It’s primarily on my right side and comes and goes. I get a strange zapping/shooting sensation and pressure around my right temple and at the base of my skull/upper neck. Sometimes the temple sensation seems completely random. It can disappear and then come back later rather than behaving like one continuous migraine attack.
I’ve already discussed my headaches with my doctors/neurology and have had imaging. I’ve also tried Botox, a nerve block, Toradol, heat, massage, neck exercises/stretches, Tylenol and ibuprofen. Tylenol and ibuprofen actually help quite a bit, but eventually the sensation comes back.
I also cannot take triptans, which limits some of my migraine treatment options.
One of the hardest parts is that I have health anxiety, so whenever the temple/base-of-skull sensation returns, my brain immediately goes to scary things like an aneurysm or brain bleed. It’s exhausting having that fear every time it happens.
This isn’t a sudden thunderclap or “worst headache of my life.” It’s an intermittent/recurrent sensation that has been happening over time and just feels very different from the migraines I’m familiar with.
For those who have chronic migraines, have you ever developed a completely different type of head pain like this? What was your experience with it, and did you eventually find something that helped?
Just looking to hear other people’s experiences while I continue working with my doctors — not looking for anyone to diagnose me.

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.

Symptoms
Chronic pain since May 2022
Pain around the base of my skull, neck, shoulders and shoulder blades
Even holding a phone is painful

Tests
MRI: Mild disc degeneration and bulges, but no nerve or spinal cord compression
EMG/NCV: Normal

Treatments tried
Long-term physiotherapy and posture correction
Exercises and medication
Deep-tissue Massage treatment

Any relief has been minimal or temporary

What different doctors have said
Myofascial pain syndrome
Fibromyalgia
Possible psoriatic arthritis

Some have completely dismissed the pain because the scans don’t show anything severe.

After more than four years, I still don’t have a clear diagnosis or effective treatment plan.

Male
Age - 35
Weight - 72 kgs
Height - 5’10 inches
Non-smoker
Meds - Gabapentin

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,

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?

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.

Getting tossed around from doctor to doctor, I was recently diagnosed with severe cervical stenosis, I’ve been having in and off burning nerve pain, neck pain, tingling and pin pricks and an overall heaviness, pm and r did an emg , which came back as fine so now….. instead of getting physical therapy….. or getting my neurosurgeon referral despite the findings of my mri, I’m being sent to a neurologist in 5 months……. It’s like they don’t believe me even though I went like 6 days without sleeping bec of the pain I was in.

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

I've tried everything. On three kinds of pain meds. Got the surgery for occipital supraorbital stimulator implant. And I got Botox. And NOTHING HELPS. I'm in so much pain today I wanna cry. I slept all day because of it. This is debilitating. IDK how much longer I can go on like this. I don't wanna be here anymore. 6 years of non stop pain. I have my good days and bad days. But even on my good days I'm still in somewhat pain. I can't take it anymore.

Hi everyone,

I’ve been suffering from **scalp dysesthesia for about 4 years now**. My main symptoms are **burning, tingling, a sensation of heat, and significant hair loss**.

The symptoms seem to get noticeably worse with **stress and heat**. It has had a major impact on my daily life, and after four years I’m still actively trying to find something that could help.

I’ve already tried several treatments, first through dermatologists and then neurologists, including **topiramate (Epitomax), propranolol, gabapentin, and more recently Botox injections**. Unfortunately, **nothing has really worked so far**.

I’m reaching out to anyone who has experienced something similar: **Did you ever figure out what was causing it? And more importantly, did you find anything that actually helped?**

I’ve also come across several studies suggesting that scalp dysesthesia may sometimes be associated with **cervical spine issues or muscle tension in the neck**.

Has anyone explored this possibility? For example, **physical therapy, neck exercises, treatment for a cervical spine problem, or anything targeting the neck/cervical area?** If so, did it improve the burning, tingling, or scalp sensitivity?

I’d really appreciate hearing about your experiences, especially from anyone who had similar symptoms and eventually found some relief.

Thank you !

Hey!
Sorry for my poor English, I used AI translation.
Ever since I bumped the back of my head on May 3rd (on a window while standing up), I’ve had pain behind my eye, in my head, and at the base of my skull. I constantly feel the need to press hard on my head with my fingers to relieve the pain (which doesn't really help).
A CT scan, brain MRI, and cervical spine MRI all came back normal. The neurologist told me it was occipital neuralgia.
I had a nerve block (half dose) and was prescribed Laroxyl (amitriptyline), which significantly reduced the scalp sensitivity and the pain in my upper neck. However, it never worked on the pain behind my eye—which is probably the most disabling part, as it causes difficulty reading (the eye hurts at rest, and eye movements make it even worse) and photosensitivity.
I just started Gabapentin 100 mg yesterday evening.
The eye pain is constant—not extremely severe, but disabling enough to interfere with work...
Is it normal for it to be constant and not seem to depend on flare-ups in the neck?
I suspect my trigeminal nerve might be affected too, because the area right under my eye, above the cheekbone, is quite tender to the touch.
Thanks for your help!

for 6 months I have suffered what feels like pressure, lately it feels like head is burning, top and the right side of the crown area. I have to always put cold water on it to relieve it. The eyes feel sore too. I’ve had numerous visits to hospital, GP , MRI scans. ENT for tinnitus. Gp alway says oh it’s just anxiety. No way on earth this is anxiety. 6 months , 24/7. Im struggling with everything in my life. I don’t know what is causing this. I’m struggling so much

Has anyone had any experience with improving their head pain with their CSF leak?
We had been recommended oxycodone and muscle relaxers, but they don’t really hit on the pain exactly I know the actual improvement is finding a leak, but we’re in an interim waiting for our Dynamic myelogram to find the sneaky venous fistula.