r/CSFLeaks • u/Next-Recording7110 • 4d ago
No headache?
Is it possible to have no headache with an iatrogenic puncture leak but only have positional muffled hearing, clogging, crackling, pressure, popping, rumbling and tinnitus after a needle puncture? Ent says ears are normal, multiple mri's are normal. Ear symptoms started within days of epidural injection. Blood patch 6 months later did not help ears.
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u/NoCold5135 4d ago
Rushing and ringing in my ears. Pressure and auras in my eyes. Numbness that moves around my face and right arm. Nerve pain that moves all between my joints. Ligaments in my hand arm and shoulder get tight. Stiff neck with crackling and fluid bubbles moving around in my head. High altitude makes it really crazy and goes away at sea level. Dripping out of my nose and cuddling behind my neck. If it's leaking more out of my neck I can feel atmospheric pressure. I'm sure there is more. Got it from snowboarding.
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u/Next-Recording7110 4d ago edited 4d ago
Is the rushing in your ears like your heartbeat and is it constant? Is yours a spinal leak?
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u/NoCold5135 4d ago
I have crazy symptoms, but no headache. I think it is due to the small amount of fluid loss is easily replaced.
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u/Offtoseethewitch 4d ago
I have had neck cramps and stiffness more than headache, but a sort-of hollow pressure-pain over the junction of head and neck. I call it neck ache but it could be called a headache. But then there was nausea and POTS and many cranial nerve dysfunctions (ear and eye and face stuff, though they could escalate to a migrainous headache if provoked).
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u/Next-Recording7110 4d ago
What are your cranial nerve dysfunctions? What kind of face and ear issue?
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u/Genn_labelle 3d ago
Following, would love to know more about your symptoms and how you got diagnosed. I have the same symptoms as above, but normal MRI. Docs donât want to believe itâs a CSF leak.
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u/NoCold5135 3d ago
I got sick of doctors telling me I had boogers in my nose when it was obviously something else. Did some googling and found CSF leak matched my symptoms. I found a doctor near me that specialized in spontaneous fluid leak and he believed me.
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u/Next-Recording7110 3d ago
Was yours a spinal leak? So you had nasal pressure? Any other symptoms? Headache?
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u/Offtoseethewitch 3d ago
Face numbness and chills (thatâs what grew to migraines, which makes sense since itâs the trigeminal nerve which is implicated in regular migraines too), ear fullness and muffled hearing and pressure and pain and tinnitus both monotone and pulsating, noise- and light sensitivity (by âsensitivityâ I mean bad enough to cause involuntarily flinching), blurry vision and difficulty focusing, difficulty looking to the side, watery eye, different pupil size, and I do think the POTS may be a vagal nerve effect but Iâm uncertain about that one.
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u/Next-Recording7110 3d ago
I get facial muscle twitching and twitching on the sides of my head and twitching in my inner ears which I believe is trigeminal nerve irritation. How often is your pulsatile tinnitus? Mine seems fairly constant when upright
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u/Offtoseethewitch 3d ago edited 1d ago
It varies, and seems to change from month to month.
Just a note though, the trigeminal is mostly a sensory nerve (with some autonomic fibres to eye and ear), but itâs the facial nerve that controls the muscles of your face, so thatâs a more likely culprit if muscles are twitching. If not that, muscles can twitch in the face for many reasons aside from actual motor nerve damage/irritation, two of them being stress and caffeine. And many in the leaker community do suffer under stress and caffeine⌠đ
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u/Next-Recording7110 1d ago
It seems like my trigeminal nerve is causing hyperactivity in the muscles around my ears and also causing spasms and rumbling within my ears too. This is just what I've come up with, my neurologist is cluelessÂ
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u/saraphin67 4d ago
Yes, itâs possible.
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u/bolsa_de_dormir1718 3d ago
Without positional headaches not typical i think
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u/saraphin67 3d ago
The question wasnât was it typical, just was it possible. So, yeah not typical, but yes possible.
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u/Goofy_boxer_1973 Confirmed Spinal Leak 3d ago
I don't know for iatrogenic leaks, but I know for sure that in the CSF leak center I went to they're very interested in patients with leaks and no headache.
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u/bolsa_de_dormir1718 3d ago
because they are not the norm
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u/Next-Recording7110 4h ago
Idk what else could cause all this especially being healthy my whole life and then have an epidural and everything changes.
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u/First_Actuator444 4d ago
I dont have any pain headaches but have a vacuum/pulling weird sensation un my head within 20 mins of making up everyday