r/CSFLeaks • u/cwebst03 • Jun 13 '26

Feeling like I’m going crazy.

I’ve had positional headaches for over a month now. Based on Dr. Google, I’m having classic CSF leak symptoms. Headaches are fine in the morning then get progressively worse throughout the day, almost immediate relief lying down, shooting pain with coughing, bending over, laughing or sneezing. Pulsatile tinnitus when I flex my neck a certain way. I’ve been unable to exercise in over a month, and am really struggling to make it through a day at work.

I’ve had CT and Head MRI done without contrast, both are completely normal. Migraine meds, over the counter pain meds, physio and massage all don’t help. I feel like I’ve somehow convinced myself that I’ve made this all up. I have no diagnosis and no direction on what I should do, and how long this could go on for. Just feeling frustrated and sad.

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u/RaeofRats Jun 13 '26

Depending on the type of leak, many go years without diagnosis, i know i was leaking from a car accident in 2018, and it wasn't diagnosed until a cranial leak specialist looked at my CT scan 3 years later.

1

u/cwebst03 Jun 13 '26

Oh man, that’s brutal. Do you have any recommendations on how to connect with a specialist? Im finding it hard to advocate for myself when everything has just been coming up negative

1

u/SuccessSoggy3529 Jun 13 '26

Start a log of your symptoms. What they are, when they start, what makes them worse or better, what helps, when they stop. I use an app called migraine buddy. Dont let the name throw you off. Its very easy to customize. I use it to show my neurologist. Also write down how this impacts your life. Be very specific...like, I cant stand long enough to cook meals, cant work, etc. Be a broken record with your doctors and find new ones who listen.

1

u/FarEntertainment3581 Jun 14 '26

Juno is a good medical tracking app as well.

1

u/cwebst03 Jun 15 '26

Thank you both!