Occupital Neuralgia

[MerlinB]

Hi all, just wondered if anyone had any experience of Occupital Neuralgia? I seem to be experiencing on-going symptoms of this , but it is undiagnosed and few people including professionals have even heard of it.

Many thanks

[Carik]

Hi, yes I was diagnosed with it after nearly 4 years of experiencing daily headache and shooting pains across one side of my head from the back of my head to the side . My scalp tingled as well and was painful at times to touch just on that side. I am taking amitriptyline and gabapentin now. Which have finally eased the pain but it took a long time to get it sorted.

[MerlinB in reply to Carik]

Hi Carik, Wow, that's a long time to get sorted, I don't mean to be nosey but I am fascinated as to how you were eventually diagnosed, as I have seen GPs/specialists etc and no-one seems to have heard of ON? Also was there anything that made your symptoms worse , or were they fairly constant? Glad that things have improved for you

all the best

Paul

[Carik in reply to MerlinB]

Hi, I found that every morning I woke up with a headache, I took pain killers initially and found eventually (before I was prescribed drugs) it would ease during the course of the day only to find that the next morning the pain was there again. I think laying down put more pressure on the nerve. Some days much worse than others. I was given head and neck stretching exercises to do each day by physio, I also wore a scarf in bed wrapped around my neck and a special pillow that didn’t work, they referred me to a pain management clinic then I had a nerve block in my neck, that didn’t work then I had acupuncture for 6 weeks which actually helped. Finally I was referred for an MRI which showed some wear and tear on the top of my spine and narrowing causing a pinch of the nerve. It also showed up an incidental brain cyst which isn’t generally an issue but they have been keeping an eye on it as it is growing. And is actually on my brain stem so now I’m awaiting results of my latest MRI as may need surgery to remove it. I have to say I felt as though I was a pest but kept going back when treatments didn’t work and didn’t give up and the NHS were brilliant and tried so many different treatments, that’s why it’s taken 4 years . Don’t give up. If you’re in pain you need it sorting so keep at it. Good luck 🤞

[MerlinB]

Thanks Carik , that's really helpful and has inspired me to keep going with my quest to sort this! thanks for your help!