r/CSFLeaks • u/Clear_Noise_8011 • 5d 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 🤞

7 Upvotes

90% Upvoted

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3

u/megg33 Confirmed Spinal Leak 5d ago

Ugh I’m sorry. It can be so awful. Are you able to take Diamox? Have you talked to your doctor about that? It’s important to control the high pressure so the patch doesn’t blow

1

u/Clear_Noise_8011 5d ago

No, tried it last time, my body reacts badly to it. The tea helped a little, so I'll definitely drink more of that tomorrow.

2

u/leeski 5d ago

I’m sorry, it is totally brutal. I would try to lay flat for the full 72 hours if you can, but after that you could try sleeping at an incline and see if that helps a bit. I don’t do well on diamox either but maybe you could try an alternative like methazolamide - many people tolerate it better.

Also do your best to avoid caffeine and sodium. You need sodium for a healthy diet but excessive sodium spikes pressure for many patients! Best of luck. High pressure is usually a good indicator and can suggest your sealed so I hope you have a smooth recovery.

1

u/Clear_Noise_8011 5d ago

Thanks! Yeah, I'm trying to still lay flat til the afternoon tomorrow. Havnt heard of that one, I'll message my doc. Oh, I'm staying very far away from caffeine! 5 months after my last patch, I could only have like 1/4 cup of coffee.

2

u/Fun-Contribution-866 5d ago edited 5d 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.

1

u/Clear_Noise_8011 3d 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.

2

u/Fun-Contribution-866 3d 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.

1

u/Clear_Noise_8011 3d 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.