Hi Sarah,

I'm in UK too and there seems to be so much more info from the USA but maybe with the increased population there, it's not all that different?!

I had a spontaneous csf leak which started very abruptly on 1st April this year. If I hadn't done my own research and paid to see a neurologist privately, I think I would be in the local psychiatric hospital now!
I was diagnosed on my first visit to see a neurologist, purely on my symptoms.

Since then I have had an MRI with gadolinium but it was normal.

I was given a caffeine infusion - non invasive, given by way of a drip x 2 on a overnight stay in hospital. I was sobbing when 3/4 way through the first infusion I felt relief for the first time in 8 months. But the headache crept back and gradually built up again even during the second infusion.

I was referred to a consultant anaesthetist who performs blood patches but he is reluctant to do one as he feels it won't be effective 9 months after the leak started and because we don't know the site of the leak.

I don't really know where to turn now... again I'm doing my own research and I'm about to contact my neurologist again to see what he can do.

THINGS WHICH HAVE HELPED GET THROUGH EACH DAY:
Amitriptyline on prescription which has enabled me to get back on my feet. It doesn't take the pain away but I can manage it better. I've even gone back to work on reduced hours but by the time I get home I'm tearful and exhausted from the pain. (I started on 10mg per day and gradually increased it to 100mg per day, under instruction of doctor. To be honest 50mg per day seems to be where it levelled out and I'm planning to reduce the dose back down to that very gradually)

Coffee, never thought I'd get sick of coffee. Some days even the thought of it makes me wretch but I need it or I can't get through a day.

Water, and copious amounts of it. I really notice the pain being far worse if I don't have a bottle in my hand and constantly drink from it.

Lying out flat, or even better, lying with your feet above your head. You need to lie on a board at an angle so that your whole spine tilts and not just raise your legs.

Ibuprofen gel slathered all over your neck, helps ease the muscle strain and pain there. Once it builds up the headache gets even worse.

If I find out who the expert in UK is I will let you know!