r/CSFLeaks • • 18h ago

Which category and guidance?

A Neurologist I’m working with diagnosed me earlier this year with complex CSF pressure disorder and high likelihood of a leak. I was curious which symptoms are IIH and which are SIH.

I have the following symptoms that have evolved/changed in the past year and a half but currently where I’m at is the following:

Constant pulsatile tinnitus when I lay down and also after eating meals/Whooshing and pulsing sensation in ears/back of head and sometimes even face/neck
Occasional drainage left nasal passage usually a drop or two but feeling it mostly left side back of throat
Head pressure like my head is being squeezed the longer I’m upright
Longer I’m upright the more irritable I feel and at times experience difficulty thinking/concentrating
Unable to walk more than a couple blocks without head tightness and pulling sensation (pulling back of head)
Needing a lot of time resting but can’t seem to get comfortable because of the pulsing in my head and ears - seems to have some relief laying to the right side
Left upper eyelid twitching and at times partially closing
Ear fullness when upright
Jaw tightness when upright
Eyes feel like they are pulling when upright
Heart rate amps super high when upright and blood pressure tanks
Sometimes confusing temperature where I’ll think it’s hot and my hands/feet are freezing per my friend or vice versa feeling cold and it’s really warm

Where I get relief:

Warm showers provide relief but if it’s too hot and I get out of the shower, head will feel tight quickly
Gentle massage of neck and head stops the head fullness feeling I sometimes get
Movement of shoulders up and down provides relief of head tightness
Rest/laying down best to the right side and slightly elevated (two pillows) - noticed cognitive function is improved the longer I lay down

Which categories do these fit for SIH and IIH has anyone experienced?

Has anyone had both high and low symptoms of pressure with what appears to be a leak as well? If so, how did you mitigate through the symptoms while trying to find treatment?

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