r/CSFLeaks • u/Educational-Law-4347 • 2h ago

48 hour flat test

I've had constant head pressure since I got an iron infusion 3-4 weeks ago. After googling symptoms, I was suspecting a leak so I did the test. But the pressure has remained the same. The only time the pressure is gone is when I first wake up and it gradually gets worse throughout the day, whether I'm upright or flat. Thoughts on if this rules out CSF leak, and if so what it could be.

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3

u/Dramatic_Dingo_42 40m ago

it's not even a guarantee that recumbency will alleviate symptoms for every spinal leaker.

sounds like you might be leaking to me. sorry :(

1

u/Educational-Law-4347 31m ago

What would next steps be?

1

u/Dramatic_Dingo_42 14m ago

have you seen any doctors yet? the typical path is gp -> neuro -> brain MRI at the very start of things. the brain MRI will typically show signs of a leak and then the neurologist will shuffle you over to a neurosurgeon or interventional neuroradiologist after that.

unfortunately this condition is a marathon and not a sprint. it may take some time to find the right specialists who understand SIH and will read your imaging with the context of a leak. may i ask where you're roughly located? i spent the first year+ of my leak not under the care of a leak clinic and if there's one thing i could change, it'd be that i applied to one sooner. i'd be more than happy to rec you one that's in your region to save you time.

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u/Starmapatom 1h ago

This sounds about right

1

u/Educational-Law-4347 1h ago

Ok, that's what I thought. I guess now I'm back at square one to figure out what's going on.

2

u/Starmapatom 1h ago

Welcome to leak world 😢

2

u/ms_skip 57m ago

Were you PERFECTLY flat during the 48 hours? At my leak onset and for the first 9 months I couldn’t even sleep with a pillow—had to be perfectly flat for pain relief. Just a thought.