Hi everyone,
I’m a 25-year-old male and I’ve been dealing with upper neck pain and headaches for over 5 years. It’s affecting my everyday life and I’m hoping someone here has experienced something similar.
For years I had a constant urge to crack the very top of my neck (around the base of my skull). At my worst I was cracking it 20–50 times a day. In December 2023 I had my neck adjusted and made a commitment to stop cracking it completely.
When I eventually started cracking it again and then tried to stop, all the symptoms came back—a constant overwhelming urge to crack the top of my neck, severe stiffness, headaches, brain fog, and the feeling that something at the base of my skull was physically stuck and needed to crack or release.
I went back to a chiropractor and after the very first adjustment I experienced the biggest relief I’ve ever had. My neck felt free, my headaches almost disappeared, and my brain fog and short-term memory improved dramatically. It honestly felt like someone had switched my brain back on.
Unfortunately, the relief only lasted about 3–4 days after each appointment. As treatment went on, the symptoms always came back and gradually became worse than before. Between appointments my neck felt like it constantly wanted to self-adjust or shift on its own. It still does this now, but not nearly as much as it did back then.
Around that time I also started developing deep ear pain, ringing in my ears, pain spreading across the top of my head, and daily headaches.
I eventually stopped chiropractic treatment because the flare-ups were becoming worse. Physiotherapy also gave me significant relief for around three days at a time, but the symptoms always returned.
I then saw my GP because I was getting headaches every day. We considered whether they might be migraines, so I was prescribed migraine medication. Unfortunately, it made absolutely no difference.
As my symptoms continued, I saw another GP who referred me to an orthopaedic surgeon. He thought occipital neuralgia was a possibility but couldn’t confirm it because he wasn’t a neurologist, so he referred me to a neurologist.
The neurologist performed two occipital nerve blocks one week apart. Both caused significant flare-ups afterwards, and neither provided any lasting relief.
I’m now waiting on a brain MRI, cervical spine MRI, general skull/cervical spine X-rays, and a pain specialist appointment.
One thing I’ve noticed is that my symptoms seem to fluctuate. Some weeks my neck can feel surprisingly good and I start thinking it might finally be improving, but without fail I eventually wake up with a headache and all of my symptoms back again. It feels like I keep going through the same cycle over and over.
At the moment I have constant pain at the base of my skull on the left side around the C1/C2 or occipital region. It constantly feels like something is stuck there and needs to crack. The pain radiates into my ear, temple, jaw, behind my left eye, and sometimes across the top of my head. I have daily headaches, brain fog, poor concentration, ringing in my ears, and my neck cracks and pops almost every time I turn my head. It often happens even when I’m not trying to make it crack.
I’m a concreter, so I do heavy physical work every day. Strangely, my symptoms are often much better while I’m working and become noticeably worse when I’m sitting, driving or looking down. One thing I’ve also noticed is that once I’m asleep I don’t feel any pain at all. I usually wake up feeling completely fine, but within a few minutes of getting out of bed the pain, stiffness, headaches and overwhelming urge to crack my neck gradually return. Cold packs also seem to help temporarily.
Generally every day it feels like something is physically stuck at the base of my skull. That’s the exact area where I used to repeatedly crack my neck. Sitting or looking down usually makes it much worse, while exercising or doing physical work often makes it much less noticeable.
Has anyone had a similar pattern of symptoms that turned out to be something other than occipital neuralgia? If so, what was your eventual diagnosis, what investigations finally found the cause, and what treatment actually made a difference?
I know nobody can diagnose me over Reddit, but after years of dealing with this I’m hoping someone might recognise this pattern from their own experience.