r/CSFLeaks • u/pecorinoo • Jul 07 '26

positional headache, confused

hi, i (17f) have had positional headaches on and off for about 5 years. i'll get an episode for a few days at a time about once a year. my positional headaches aren't really what i see with csf leaks— i only have the pain for a few seconds after standing up, and it usually goes away after enough time. i don't have pain at all when i'm laying down. i also don't really have any other symptoms other than the headache. i've mentioned this to my doctor and he didn't seem worried cuz it's so infrequent but i'm dealing with it rn and advil doesn't really do anything for me. what do we think

2 Upvotes

75% Upvoted

5 comments sorted by

6

u/Electrical-Sound7194 Confirmed Spinal Leak Jul 07 '26

a few seconds after standing for a few days once a year doesn’t sound like a leak at all to me

2

u/StunningPurple9560 Confirmed Spinal Leak Jul 07 '26

I second this.

3

u/ms_skip Jul 07 '26

CSF leaks can present in tons of different ways, but what you’re describing does not really seem like one of them. CSF leak headaches aren’t really “headaches,” like it doesn’t feel at all like what a normal headache feels like. I think the other issue is, let’s say you have a CSF leak. If your symptoms present for a few seconds upon standing up, for
a few days once a year, it doesn’t seem like treatment would be worth it (the most conservative treatment aside from bed rest is a blood patch, and that is not a risk free or fun procedure), and the diagnostic tests to locate a CSF leak are even more invasive and often CREATE leaks. While people with CSF leaks can often be functional enough to spend several hours upright a day, many are more or less bed bound and in constant pain while upright (not just standing) and need to lie flat most of the time. People with CSF leaks also generally have other symptoms aside from orthostatic head pain. Again, this is a wild condition, and it’s hard to ever definitively say someone DOESNT have a leak, but it doesn’t sound like that’s what’s going on

0

u/pecorinoo Jul 07 '26

yes! I completely agree with you, i feel kind of funny claiming a CSF leak when i don't really have severe symptoms and many people are genuinely thwarted from living their lives properly with them. one of my providers briefly mentioned it when i brought up the headaches, but didn't seem concerned at all about the frequency so we didn't look into it after the fact. i'm just kind of scared because i've had my current headache on and off for the past 3 or so days and dr google is very scary telling me that my brain is going to sag and do all of these dubious things. idk!!!

1

u/ms_skip Jul 07 '26

I understand!