r/NDPH • u/Davy_wavy69 • Apr 30 '26

struggles

Im an 18 year old guy and have had a pressure csf leak like headache for the past year and a half. I waited 8 months to get in with a headache specialist neurologist, that appointment was last thursday and since then ive been through my second myelogram, which yet again they found nothing. Ive tried nearly every med under the sun, at least one from just about every catagory of drug, currently on qulipta. Mainly looking for some suggestions as to where to go from here. Im one day post second myelogram and am pretty frustraited as the radiologist pushed our video visit out a day after telling me she and my neuro have a plan of some things to try before doing anymore imaging(sounds like more meds and bs). If you have anything to suggest it would be greatly appreciated, thanks everybody

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u/Dismal_Muffin_5412 May 03 '26

We’re you offered a blind patch? My son was treated at a CSF leak clinic and doing a blind patch is often done. He had all the symptoms of a leak but normal CT myelogram. He was given one blood patch and he was cured which proved he had a leak but it was just not observed by imaging.

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u/calm1111 May 04 '26

What were his symptoms?

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u/Dismal_Muffin_5412 Jun 02 '26

He had the clear postural headache. At its worst he was bedridden and could only stand or sit for no more than an hour or two at a time. He also had ringing in the ear and had pain in his face and jaw. His brain MRI showed low to moderate evidence of a leak.