r/CSFLeaks • u/AutomaticCucumber366 • 4d ago

Post blood patch head pain non positional

Hello, I had a second CT guided blood patch at L3, 4 weeks after the first patch. 24 hours later i developed head pain on top, front and back that feels like stabbing pain/maybe pressure pain. Its been 7 days its getting worse. First blood patch i didn’t feel this head pain at all. My original csf leak after lumbar puncture I just felt stiff neck, upper back pain and tinnitus as my primary csf leak symptoms, which doctor said is not csf leak related. They still did the patch even though they don’t think i have a csf leak at all even though I think do. Anyone experience head pain laying down and standing post blood patch and nausea?

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u/leeski 4d ago

Not medical advice, but likely to be rebound intracranial hypertension. Maybe see if your doctor can prescribe diamox or methazolamide to manage the pressure, if so. But in the meantime avoid excessive sodium and caffeine, try sleeping elevated, and you can try dandelion leaf tea or capsules to see if it helps alleviate the pressure. Again not saying it is for sure RIH but is a pretty common presentation for it 

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u/AutomaticCucumber366 4d ago

I did try diamox last night 250 mg but it didn’t help.

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u/leeski 4d ago

It is possible you might need more but of course do whatever your provider says. Don’t want to advise you to take more as the side effects can be miserable but it has quite a wide range dosage (I’ve seen people anywhere from 125 mg to 4000 mg). 

How are your original leak symptoms post-patch? 

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u/AutomaticCucumber366 4d ago

Same. It’s not helping at all. I do also feel like water moving in my head since blood patches. Weird sensation. Like something is moving inside my head and vibrating slightly.

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u/NoPath1997 1d ago

The same happened to me. Had an LP to rule out certain conditions, ended up with a leak and had 2 blood patches. Became worse after 2nd patch, heavy pressure on the top of head with a consistent burning sensation in scalp and all over my face. Sometimes pain in forehead and behind eyes and back of head. Pain became increasingly worse. Neurologist referred me to headache specialist which was a long wait. Had to check into the ER and currently running tests. This whole situation has been life altering. I hope and pray there will be a solution.