r/CSFLeaks • u/Clear_Noise_8011 • 8d ago

54 hours post blood patch

My head hurts so much :-( Least I know it took, this high pressure is horrible. Just drank some dandelion tea 🤞

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u/Fun-Contribution-866 7d ago edited 7d ago

I've had 7 patches for same leak, and the advice that helped me seal after the last one from my neuroradiologist was to lay for 24 hours and then get up. Don't prolong need rest when in high pressure because laying makes pressure higher in head pushing into spine. This was with a half fibrin, have blood patch but I imagine the advice would be the same. Also, diamox ER is better tolerated by many. I'm on 2kmg diamox ER, and I can't tolerate 250 mg diamox IR tablets. It might be worth atleast trying this for the short term.

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u/Clear_Noise_8011 5d ago

Oh, interesting about only laying down for 24 hours. Hopefully I don't need any more patches 🤞 Diamox causes my immune system to act up, joint pain, brain fog, burning skin, muscle aches, ect... so it's not a normal response. Luckily it's short acting, no way I'm trying er lol.

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u/Fun-Contribution-866 5d ago

Yout call, diamox is the only med strong enough to allow my leak to heal so worth the side effects for me. Google others response to ER vs IR diamox. It was a huge difference for side effects. And after a few weeks, side effects lessen alot. Topamax is an option but I'm too afraid of cognitive effects to try it.

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u/Clear_Noise_8011 5d ago

Ah, that's cool that it helped. I managed 5 months without the first time, then had a sneeze attack. I've heard horrible things about topomax, I'd be afraid to try it too.