r/Occipitalneuralgia

Do you also have persistent pain, for example, a coin-sized area that constantly feels dull and throbbing?

Or pain that sometimes changes location?

Hey everyone, hoping someone here might have some insight or a similar experience because I’m honestly at a loss.

For the past year+ I’ve had pretty constant dull aching pain on the right side of my head — mainly around my temple/temporalis area and behind my ear. The sensation is like a mix of burning, tension, tightness, and pressure. On bad days it radiates to the right side of my face — around my eyebrow and in front of my ear. It never really goes away, just fluctuates in intensity.

On top of that I have this constant off-balance feeling, like I’m walking on a trampoline, with a general floaty/disconnected sensation. That part is honestly just as disabling as the pain.

I’ve been pretty thorough on the medical workup side — ER visits, PCP, ENT, and a neurologist. Tests include comprehensive bloodwork, CT of the brain, CTA of head and neck, MRI of the brain, ECG, and a VNG. Everything came back normal.

So here I am, 24 years old, otherwise healthy, with no answers. Has anyone dealt with something similar? Does this sound like it could be TMJ-related or occipital neuralgia? Any insight, similar stories, or specialist recommendations would mean a lot. Thanks

The last week has been especially rough because of very extreme fluctuations:

• Yesterday I went to bed with almost no pain. It felt like it was finally getting better — I even had the feeling that I was almost “healed”.

• This morning I woke up with a strong, diffuse, strange feeling covering my entire left side of the head.

• It pulls quite strongly to the left ear when swallowing, and sometimes even a bit down into the neck.

• I also get a weird, numb or “off” feeling in my right upper teeth/jaw at times.

• The pain can switch from almost nothing to very present within hours or from one day to the next.
• Some moments it feels diffuse and “not real”, other times more localized again.

It feels like my nervous system is extremely unstable right now. The left-sided symptoms and the strong day-to-day (and even within-day) changes have become much more intense in the last week.

Has anyone experienced something similar with ON + strong central sensitization?

Especially:

• Very big fluctuations within short periods of time
• Pain almost disappearing one evening and coming back strongly the next morning on the opposite side
• Referred symptoms moving around (ear, teeth, neck when swallowing)

I would really appreciate hearing if others have gone through these kinds of intense swings. It’s mentally quite exhausting.
Thanks in advance.

Hi has anyone successfully treated their on with gabapentin?

I have my surgery tomorrow morning! I’m so excited to finally start healing from this nasty business. Wish me luck! I’ll come back to update y’all on the process.

Hey y’all I came to this Reddit years ago when I was unemployed, in agony, and completely hopeless for a future with ON and now I’m an EMT with a 90% recovery and almost no daily pain without exacerbation. Freaking insane, thank those of you who encouraged me not to give up.
I wanted to share some of my findings, and while every diagnosis is different here’s what fixed me and might give you some stuff to try:

Initial diagnosis: Herniation of C5-6 after chiropractic injury, fibromyalgia, migraine disorder

Diagnosis Now: Instability and atrophy of lower and middle trapezius, cervical muscles and trapezius attempting to stabilize (protect) the C5-6 herniation through constant unrelenting tension (Guarding).

Treatments That Actually Worked:

-🔥Platelet Rich Plasma (PRP) Injections to the cervical spine done by my Osteopathologist

-Physical therapy to strengthen the middle trapezius, helping take the load off of the upper traps which pull at the occipital region when tense.

Treatments That Helped A Little:

-Swimming in cold water or daily fluid movement routine
-Massage cane (DON’T OVERUSE) without overstretching.
-Regular Ice

Been in PT for months to no help. Every breath i take my right shoulder blade kills. The upper head neck pain is always there. Anyone have any exercises or fixes for this?

I’ve been a long time lurker of this sub and thought I’d come back and share what has helped the most throughout my journey and what didn’t.

TLDR;
Good:
prolotherapy, steroid nerve blocks, botox, excellent PT that specializes in upper cervical, acupuncture, xanax as headache abortive/reset, amazing osteopath, Yippo Labs cervical spine pillow, Apothecanna body spray (basically CBD icy hot)

Bad:
gabapentin, pre-gabalin, chiropractor, migraine abortives (don’t help with mechanical issue), average PTs, average acupuncturists, car rides, THC, stress/anxiety, poor sleep, tracking pain days/symptoms, alcohol, pain management apps, stretching

Average:
massage therapy, pain theory therapy/psychologist, muscle relaxers, magnesium, lidocaine infusions, nerve blocks without steroid, meditation, Pilates

The journey:
This all started with a MTBI and whiplash from a ski accident when I was 26, but turns out my spine is hypermobile which made the injury more difficult to recover from.

Initially I tried PT, chiro, and migraine meds. Migraine meds (CGRP, Ajovy) helped with the initial injury + concussion inflammation and got my nervous system to calm down slightly. This eventually lead to it narrowing down to more of a mechanical issue versus migraine (which needed to be treated). Took 2+ years to even get to this point.

Chiro didn’t help at all and PT was not specialized enough to help. Saw 5 PTs and they all were a waste of time.

Started getting steroid nerve blocks in the occipital region, helped a ton over the course of 18 months. Got them every 2-3 months to get the inflammation to calm down. Also started getting Botox for migraines.

Found an osteopath that specialized in brain injuries that also helped a ton with both nervous system recovery and my neck. She really kickstarted the beginning of actually healing from my injury.

Then did 2 rounds of prolotherapy to stabilize my upper cervical which reduced my pain by ~60%. Found a PT that specializes in upper cervical and helped a ton with at first pain management, then strengthening my neck and helping stabilize and get my muscles firing correctly.

Now I’m at the point where I’ll flare up sometimes from planes, bad sleep, and can’t really go more than 45 mins in a car from vibrations but I mostly live my daily life with minimal headaches, especially compared to what it used to be. Hoping to eventually solve the car issues with more prolotherapy!

Also, I qualified for an ablation but decided not to and opted for prolotherapy instead. Glad I did, find a pain doc who you trust because I did not trust my initial one. It would have made the mechanical aspects harder to recover from and potentially made it worse. It’s still in my back pocket as the nuclear option.

I’m in Seattle, WA if anyone is ever looking for doctor recs.

And it’s slowly looking like a NUCCA chiro was the answer my first session and all the pressure in back of my head is barely here anymore neck pain is minimum… Does it just get better from here on out any else with experience ?

Hello. I have been to a million doctors and none have mentioned ON but I recently learned about ON through my own research and I’m curious if you think I fit the criteria. Here’s my story:

In November I started having sudden symptoms out of no where of what I now know as hyperandregenic POTS.. Heart rate adrenaline surges at night with inappropriate sinus tachycardia. Near fainting vasal vagal episodes. Waking up every two hours with these surges where HR would sky rocket. Could barely eat. Very weak. Barely moving. Lots of hospital visits. Put on benzos. Told it was anxiety.

In December it evolved into more like orthostatic intolerance. Still having vasal vagals, adrenaline at night cooled down a little, but things like stairs, Hot showers, exercise triggered it. Miserable but thinking it was nervous system related or stress, tried going to yoga. After a morning at a pretty chill yoga class around Christmas time, I went to ER bc my tongue, jaw and face on right side went tingly and words felt slurry. It passed after an hour. MRIs all normal. Words not actually slurry. Brain fine. Just feels slow to process.

After this, I started getting it every day. The right side of jaw and roof of mouth would get this pressure/aching sensation and words felt slurry to form. Right foot also goes floaty feeling for a bit. Then it passes. Especially when I was on tense work calls.

Late January, still thinking it’s autonomic nervous system dysfunction and I need to just relax, I go get a massage. During massage I feel a release in my neck, arms go tingly. Sit up from table. Vision is super blurry For 30 mins can barely see. Freaking out. Go to ER. MRI is normal. Vision is back. They say I’m fine.

From then on, January to March, I am getting vision blurring in the night when I wake up. Pressure in eyes. Same jaw and trigeminal nerve sensations. Neck is now involved. Base of skull and brainstem area get heavy sensation and start going “offline” I call it. Like spine lacks sensation. Right foot floaty. Then comes back.

Then i get a migraine phase. Now the nerve pain tips into headaches that light up the whole pathway. Right eye tears up even on a chill day just crying tears nonstop. I Get put on Nurtec every other day and I start to feel recovery. Adrenaline surges decrease, HR stuff cools down aside from intense workouts and heat. Nerve pathway isn’t as easily triggered. Living my life a little more normal. Hopeful.

Then in the past two weeks after traveling and losing my job while on disability everything is back. Migraine I can’t break. I’m having the slurry word feeling again and jaw/tongue/roof of mouth but now more often— multiple times a day. Eye pressure and vision blurring in night. It comes and goes. HR weirdly goes down low when I’m in a flare. Can’t look at screens without getting weird eye pressure and disassociated feeling.

Nerve study normal, EEG normal, labs all normal, MRI head and cervical spine normal except CCI and compression at C1 and C2. Neck specialist says CCI is compressing vagus nerve and jugular. Been doing PT on my neck but can’t do much without triggering. More neurological symptoms. Neuro opthamologist says eyes are normal. Cardiologist says heart is normal. Tilt table test shows some form of POTs hopefully not long term but I’m approaching 6 months of symptoms. And Getting head and neck MRA on Friday.

Any thoughts? Anyone experience something similar with sensitized nervous system leading to this pathway lighting up? Is this ON? Migraine with brainstem aura? Solutions??

Migraine specialist is saying get Botox and neurologist saying nerve block. Both scare me bc of the CCI and compression theory. Don’t want to make anything worse but also this sucks so bad. I need to get back to work and desperate for relief.

Help!!

I’ve been dealing with what doctors think is occipital neuralgia / cervicogenic headache / migraine overlap for about 6 months.

It started suddenly while driving when I turned my head left and felt a sharp pinch/electric sensation at the back left side of my head near the base of the skull. Since then, turning my head left/down and sudden movements trigger pain. Over time it spread more around the base of my skull and sides/top of my head.

What’s weird:
- cardio actually helps a lot
- shoulder/trap workouts flare it badly
- posture and sleep position matter
- acupuncture and neck brace helped some
- gabapentin + low dose amitriptyline help, but symptoms come back when meds wear off

Neurologist thinks migraine pathways may also be involved. I’m considering an occipital nerve block next.

For people who improved:
- how long did recovery take?
- what helped the most?
- did injections help?
- were you able to taper off meds eventually?

Would appreciate honest experiences/success stories.

still have a driver's license and trying to find a "cheaper" alternative to buying a car?

I don't think I can "work from home" it just hasn't happened. But I know it was my fault. I don't care about it, I want to carry on with a goal in mind. Jovs require planned ahead in-times. reliable forms of transportation id incredibly important.

side question.... I worry abought turning my head, left and right and left again over and over just id do in a car. The mirows would take getting used to, Plus all things "Zen and the art of motorcycle maintenance", Does the helmet hurt? Is it a viable form of transportation for you?

Does anyone with occipital pain have eagle syndrome? I know it’s a long shot, but I wanted to find out it anyone one here found out that they had eagle syndrome?

This started about 1.5 years ago immediately after a weightlifting session. At first, I didn’t pay much attention to it, but when it didn’t go away and became bothersome, I started seeing many doctors.

I experience a pinpoint-like squeezing sensation, especially in the back of my head, the top of my head, and sometimes above my forehead. At other times, it feels more like pressure and fullness.

I’ve had multiple MRIs, and aside from venous hypoplasia—meaning one of my veins is thinner than the other—the doctors said this could be the cause. However, I personally feel like this may not fully explain it, so I’ve continued researching other possibilities, such as occipital neuralgia.

My question is: has anyone experienced this or something similar?

Do you have a specific PT recommendation in the Denver area that is really good at treating aspects of spine/headaches related to this occipital neuralgia ? Or other treatment ideas? My 79 y/o Mother was diagnosed by neurologist, and meds and lifestyle modifications aren’t helping, she has intermittent shooting/ice pick headaches on 1 side of head that goes up behind her right ear, these started insidiously about a month ago , went away for a couple weeks then came back , often occurring every 15-60seconds of walking hours.

Thank you.

Hi there..I've been suffering from ON for nearly 4 years and it has been impacting me so much now as I'm on crucial stage of my career and I've to take important exams..I'm finding it hard to memorize or recall due to constant burning feeling and fogginess.Tried Nortriptyline,PreGablin and vitB12 along with neck physiotherapy but no significant recovery.It's making it extremely hard for me to thrive in life..Idk what to do,Advise please..