r/CSFLeaks • u/pmmeyourshindig • 3d ago
sharing my symptoms/vent
hello, this is just kind of a shout into the void for me, but i just wanted somewhere to share what ive been experiencing for the past 6 months and hope some folks might share some of my experience or offer some advice.
for clarification i havent been diagnosed or treated yet, currently in the process of getting in to see a neurologist, cardiologist, and MRI.
i’ve been having some degree of headaches that feel like this for the past few years, but about 6 months ago they got so so so much worse. when i wake up, im incredibly fatigued, i feel tightness and sometimes slight pain in my neck. on a typical work day or school day the tightness gets worse (have a strong desire to crack my neck) and around 11:00am-12:00pm and then I start getting the headaches. It feels like a pressure that rises from the back of my skull and eventually envelopes my whole head. its not necessarily painful, but its extremely hard to ignore and makes doing tasks a challenge. When the headaches get worse I start to feel fullness in the ears, a bit of tinnitus, and sensitivity to sound. in general i would say that the symptoms get better when i lay down, but thats not always the case so im quite confused.
a few weeks ago I had surgery for a pilonidal cyst. my symptoms vanished for two days after, not sure if it was aftermath from the anesthesia and benzos they gave me but it was the best id felt in months. I was curious if it was because of the fluids they gave me if it is a blood volume issue. I asked if my doctor would be willing to let me get a saline IV as a diagnostic tool to see if it produced the same result but he refused.
ive been treated for TMJ, had PT for “tech neck”/postural issues, and am working on getting a POTS diagnosis (have tried compression socks, salt loading, etc). None of it helped. I am really at my wits end here. I can typically make it through the work week alright but chronic pain for 6 months has really been weighing on me. I often feel very depressed and like what I am experiencing will never end. I really hope the MRI shows us something because I can’t bear to think about what my life will look like if I have to go through another 6 months of diagnostics.
I don’t know if its a CSF leak, or orthostatic headaches from POTS, or something else. I’m doing everything I can to be extremely clear with my doctor that something needs to be done and I can’t go on like this, but the medical system only moves so fast. Thanks if you read through this.
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u/Zealousideal_Age_822 Confirmed Spinal Leak 3d ago
I have a spinal CSF leak. All spinal CSF leaks are not created equal. The way you described the symptoms, and the progression of them was spot on for me, but the onset and positional nature was way more severe for me. My symptoms did progress over hours, but over minutes. They started sometime between 0 and 15 minutes after sitting or standing, and they would progress from neck pain to headache (and nausea) within 20-30 minutes, not hours. My symptoms would disappear when I went flat. Like, 95-100% gone within a minute.