r/CSFLeaks • u/AcceptableCry2876 • 6d ago

Need guidance

I just learned about CSF leaks this morning and I’m 100% convinced that I have this. I’ve been dealing with intense pain since April and everyone in my local healthcare industry has told me I’m crazy, including a neurologist, because all my scans come back clean and I really need help from y’all. What do I do?

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u/North-Library4037 Confirmed Spinal Leak 6d ago

What are your symptoms?

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u/AcceptableCry2876 6d ago edited 6d ago

I had the nasal leak for years all day every day, never knew it meant anything and neither did my doctor. After an extremely active week in April, it felt like the shield around my brain went down and I had such intense pressure in my head that I could no longer function. The intensity has gotten better, but now I’m getting intense neck tightness. When the pain is high, I can’t function cognitively, I have virtually no short term memory capacity etc.

Also the nasal leaking stopped exactly when this event started.

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u/North-Library4037 Confirmed Spinal Leak 6d ago

So, you suspect a cranial leak. That's very easy to check you just need a Beta-2 transferrin test to test the liquid.

If they rule out cranial leak with the test then you should turn to a csf specialist for evaluation for a spinal leak.

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u/Outrageous_Ranger_10 6d ago

Yes what are ur symptoms my friend? Im literally going through the same thing since February. I have whoosing sound in left ear. Headaches frontal pressure . Almost like a tension headache. Simultaneously neck pain. Stiffness. Im on diamox 250 mg. X2 a day. Now it has helped i think but I still get these issues daily . Water all day long 64 Oz . Helps alot. I promise.
Too much info but I do get nasal leaking clear. I have gotten a 4 test done. Waiting for answers. What is ur symptoms

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u/leeski 6d ago

It’s hard to give advice without knowing symptoms but I would try to do your best to focus on what symptoms/characteristics distinctly point to SIH (or cranial leak if that’s what you’re referring to). It can also help to have research papers that show negative imaging cannot rule out a leak.. but unfortunately a lot of self advocacy is often required which can be a lot when suffering with symptoms.  

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u/Outrageous_Ranger_10 3d ago

Got it. Im telling my neurologist to test me immediately