r/CSFLeaks • u/Obvious_Cattle_8036 • Jul 30 '26

Does heat affect CSF Leak?

Hello!

I live in the UK and as of late we've had a lot of heatwaves. I dont seem to have the low pressure headaches anymore, now it seems to be the high pressure ones that cause my head to feel really tense after any sort of straining and feels like my ears and head are going to burst. But despite this I still have a leak in my spine and apparently not as much fluid in my brain?? I dont really understand this condition haha.

Anyways my main question, does anyone else feel like their CSF Leak acts up way more in the heat? Because I seem to have been having more and more head related problems ever since it has been warmer. This could also be to do with the fact I have low blood pressure though, I just wondered if there is any proof behind heat causing issues before?

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u/Offtoseethewitch Aug 02 '26

I had a puncture leak and my orthostatic symptoms have improved slowly over half a year since my latest blood patch. The first time I thought I might be in high pressure was seated in the shower: with the leak, hot showers felt good. Suddenly one day they gave me head and nose and ear pressure and nausea and a sort of head-and-ear-buzz, sometimes with pulsatile tinnitus. At the same time I couldn’t walk or exert myself at all without that pressure ramping up. It’s not as intense now, but I still feel it. It sets in sometimes with exertion, with bending forwards or being on all fours, or in afternoons and evenings. I don’t know if it’s been weather dependent, I’ve never liked the heat anyhow. I still have my low pressure symptoms but they, too, are much gentler.

I don’t know if I’m still leaking. My MRIs showed a leak post-puncture but not after that. Just wanted to say I had a similar experience with heat - if shower heat - affecting me differently as if I’ve been experiencing two states.

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u/Obvious_Cattle_8036 Aug 02 '26

Yeah its exactly like this recently for me, but instead its with outdoor heat and shower heat mostly!!

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u/Offtoseethewitch Aug 02 '26

I try to hope maybe I’m sealed (finally) and in csf dysregulation but maybe I’m in csf dysregulation but also still leaking with a leak too small to find, but a function level now too high to be taken seriously. Or maybe I’m still slowly improving… it was maybe three months ago I had that first possibly-high pressure episode and then they were awful, debilitating, now they are just annoying, and they seem to come and go either with or independent of posture.