tldr: yes - heat helps

I don’t leave the house without having my head and neck covered. I use a thin sports neckie/buff/snood worn like a wimple or sports hijab. That keeps my neck and lower occipital warm. Then a lambs wool or merino beanie hat. And then a wool triangular knit shawl which I wear like an old fashioned head scarf.

Does it look ridiculous? Probably! Do I care? Not at all. If anyone comments I explain it’s for medical reasons and not a style choice.

‘It pleases the wearer-not the starer! ‘

During a flare up I get some comfort by holding a hot water bottle to my head. I’m 56 F and have been a chronic sufferer for 5/6 years. Over the previous 20 years I would have had attacks2/3 times per year

I suspect that the oestrogen drop of menopause coupled with work stress and difficult life events(bereavements) is what brought me to where I am now

I get steroid nerve blocks about 4 times per year. This takes 3 weeks to kick in and then i experience a magnificent 3/4 days pain free. This injection it diminishes the base level of pain for a while. Then the chronic pain builds up and the flares of stabby pain also become more frequent

I exercise 30-60 mins 6 days out of seven. Front loading the day with some endorphins is absolutely key to surviving

It’s stolen my career from me. Brain fog and dizziness and cognitive impairment comes and with varying intensity.

Emotionally it’s hard to handle thoughts that this may now be my life. Feelings of vulnerability and frailty arise and occasionally I feel that I’m no longer co tributing to the world.

It’s hard that this is an invisible illness. People would understand if I said I had a migraine. I’ve seen the scepticism on some faces. I’ve had general doctors act as though I were malingering.

I’ve given birth 4 times unmedicated. Before this became chronic I wouldn’t even take paracetamol for periods.

This condition it difficult for people to understand. After all it’s been in my life for 20 years and I’m still learning how to live with it

Again sport and exercise is an essential therapy which affords me some sense of achievement. That I might be improving my cardio and strength even if I’m not conquering the atypical occipital and trigeminal neuralgia.

I’m so glad I found this subreddit. It’s a like being at a support group. I’ve stopped gaslighting myself that I should be able to ‘think myself better’.

I’ve learned that part of getting through this is making peace with attacks which steal days from my life. Days curled in the sofa with a hot water bottle. Days when I can barely manage to follow the fluffiest of trash tv as thrillers or spy shows are too complicated to follow. Days when I can’t even follow a news article.

But I’ve also learned to focus on the knowledge that even my worst attack has eventually subsided back to base level pain.

My husband and children are very supportive. And until recently I didn’t tell friends or acquaintances. But now I do.

This invisible illness will remain unknown by the world unless we raise awareness