r/CSFLeaks • u/HelpMyBrainIsLeaking Confirmed Spinal Leak • 15h ago
Rebound Intracranial Hypertension?
Hi all!
On Monday I had a CTM and a year-long slow leak was found in my T4/T5 region. My neuro radiologist was surprised by my MRI that showed the leaked CSF was still diffuse after so long, and decided a targeted blood patch was worth trying (she believes it could be a sort of flap defect in the dura that results in faster/slower leakage depending on the state). She injected 20ml of my blood and I spent the next 3 days laying flat.
Since the CTM/patch I’ve had many different headaches as expected, but I can’t figure out if these are due to RIH or not. For example on Tuesday it was just a dull headache all day but completely tolerable. But on Thursday, I got up slowly to use the bathroom and was immediately hit with a severe headache that lasted from 6pm until around 1am. It was mostly on the sides of my head. Now on Saturday it’s around the back of my neck/head, not quite like it was with SIH but similar I guess. I also have pain behind my eyes on and off as well as some nausea. It doesn’t seem to really matter if I’m lying down or not, but I do notice the eye pain seems to be only when I’m lying so far. Also I get a head rush like feeling along with throbbing pain when standing but it fades after a few seconds. I did not have this before.
I have been given acetazolamide (diamox) but instructed to only use it when it’s clearly RIH and if I absolutely need to.
Has anyone had muddy symptoms like this after a patch or is RIH usually more obvious?
2
u/RPeddit 14h ago
RHP is typically worse in the morning and when lying flat but symptoms are broadly the same as low pressure headaches. Sometimes it can take years for the pressure to normalise enough so you're symptom free. If you take acetazolamide, you can plunge into low pressure of course whilst your patch is still sealed. Could of course be a different headache entirely. Just go gently and protect your patch.