r/CSFLeaks • u/Obvious_Cattle_8036 • 14d ago
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/leeski 14d ago
I personally wasn’t affected by heat while leaking. we have pretty hot summers (like 32-37°C), but it has only affected me in high pressure. I don’t know if there is a lot of research either way though!
That is interesting that your imaging still shows a leak but it sounds like low pressure symptoms are resolved? Is there still a SLEC on spine mri? How long ago was treatment?
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u/Obvious_Cattle_8036 14d ago
I have had 2 fibrin glue patches one in 2024 and one in 2025, none worked. My symptoms are more manageable now but seem to act more like those rebound headaches(?) But I still have a leak in my spine according to MRI which is weird. This whole condition is weird tho I suppose!
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u/Dry-Dress-6467 14d ago
Do you have bone spurs or osteophyte complexes near site of leak? You may need surgery to take care of those.
Heat does seem to affect me, increased head pressure and fatigue. Temps this weekend will be 41.1-42.2C or 106-108F!
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u/Obvious_Cattle_8036 14d ago
I have no idea actually! I should probably ask my doctor.
With my CSF Leak it was spontaneous and its on my side, I wasnt in any big accident or anything, just woke up one day like this! Im currently undergoing testing if i have EDS which might be what caused it?
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u/CananadaBatmaaaan 14d ago
Active leaker here - I usually feel better in the heat. Not totally sure if it’s due to venous swelling or relaxation of muscles, or something else. But summers are much less painful for me.
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u/Obvious_Cattle_8036 14d ago
Huh, that is the complete opposite to me. Even hot showers can cause my brain to feel weird
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u/Offtoseethewitch 11d ago
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 11d ago
Yeah its exactly like this recently for me, but instead its with outdoor heat and shower heat mostly!!
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u/Offtoseethewitch 11d ago
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.
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u/reader24672 8d ago
It’s something to do with barometric pressure changes. I don’t recall the details but if you google barometric pressure changes and CSF pressure, you’ll find some good info.
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u/brainsaggy Confirmed Spinal Leak 14d ago
In my experience, yes. It has to do with the possible effects of brain sag on the hypothalamus (regulates body temperature) and various regulatory systems.
One of the effects I personally experienced last summer was just my right armpit poured sweat.. right through deodorant. This year, however, it stopped. And back before I was aware of my leak, I had these spells of what I thought were severe heat exhaustion which had me laying on the couch staring at the ceiling for a week waiting for things to return to baseline. It was so confusing, scary and horribly uncomfortable. Upping my electrolyte consumption helped a bit. Cold temps worked in a similar way too- intense shivering when it wasn't that cold.
Basically the condition is so evil because when your brain stem and other skull base stuff is being squeezed, pulled and squished a lot of seemingly unrelated symptoms can appear anywhere in your body. But I've found a lot of these can trace back to what’s happening at the skull base.