u/SpiritualRun9642

Hey girls, anyone here dealing with ON, How do you manage your hair?
I cut mine short because tying it was starting to hurt, but now styling it is a whole other problem. Leaving it open feels uncomfortable sometimes, and even things like headbands can trigger the pain.
How do you manage day to day, especially for work/gym/going out? Any hairstyles, clips, haircare or styling tricks that don’t put pressure on the back of the head?

Hi everyone, new here. I was recently diagnosed with occipital neuralgia by a neurologist and wanted to hear from people who have actually dealt with this.
I’ve had neck/shoulder issues on and off for quite a while, mostly from long hours working at a desk. A few months ago I had a pretty bad neck spasm with pain going into my arm. I had an MRI which showed a C5-C6 disc protrusion with moderate canal narrowing/cord indentation, but no cord signal changes or definite nerve root compression. The arm pain eventually completely went away.
More recently I started getting a different kind of pain — starting around the back/base of my skull and travelling upwards, sometimes towards the area above my ear, temple, forehead or behind the eye. It can switch sides between episodes. Lying with the back of my head on a pillow can also trigger it. Deep massage actually seemed to make it worse.
I saw an orthopaedic doctor and then a neurologist, and the neurologist diagnosed me with occipital neuralgia (and also mentioned migraine). She gave me an anti-inflammatory for a few days and low-dose amitriptyline/Tryptizol. Unfortunately I reacted really badly to the amitriptyline — anxiety, racing heart, very strange thoughts/imagery while trying to sleep, etc. My doctor told me to stop it after 3 doses.
The actual shooting ON pain is MUCH better now, but for the last couple of days I’ve had this really strange head feeling that I struggle to describe. It’s not exactly vertigo and the room isn’t spinning. More like foggy/heavy/off, slightly lightheaded at times, tired and just wanting to sleep. I’m otherwise functioning normally and don’t have weakness, numbness, speech/vision problems etc. Sleeping seems to make the feeling better, but then it can come back after I’m up for a while.
Has anyone with ON experienced something similar, especially the weird foggy/off-head feeling even when the actual nerve pain isn’t that bad?
Also curious what has genuinely helped people long term. I’m trying to work on weight loss, walking, posture, reducing long hours in the same position, sleep, heat etc. I’m also considering some gentle Ayurvedic treatment, but definitely no deep neck massage/manipulation because that seems to aggravate me.
Would really appreciate hearing what worked for you, how long your flare lasted, and whether you eventually got back to feeling completely normal. It’s completely ruining my everyday routine. Ugh!