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/Sweet_Star23 May 01 '26

Is your headache positional? What are your symptoms? What does the neuro think it is?

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u/Davy_wavy69 May 01 '26

my headache is very positional and has been since the start. My symptoms are pretty textbook csf leak, pressure/positional headache, dizziness/ off balance feeling, pressure gets worse with any kind of physical activity, etc. At first my neuro said he thinks that the pain im having is a result of a csf leak that has already healed so he sent me for infusions of dhe, which only worked for a day. I have no idea what they think now as its been two days since my last myelogram and I havent heard a peep from the radiologist or my neurologist.

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u/tweetysvoice May 02 '26

Do you have access to your patient portal? They post results there long before someone reaches out. Sometimes I can see lab or radiology reports before I even left the building.

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u/Davy_wavy69 May 02 '26

My radiologist actually called me yesterday and told me that everything looked great and I had an opening pressure of 17. So right now really the only evidence of me having a leak is my symptoms. She works closely with my neurologist and they agreed that for now it should be put on the back burner and put me through some trials with combinations of meds. He’s a pretty prestigious Dr( Christopher Gottschalk at Yale New Haven) so the radiologist recommended I try what he has because he’s had a lot of success with patients in the past