My First Spinal Tap for IIH: Is This My Life Now?

You may need a patch. Are the headaches worse when upright or laying down? This happened to me as well

I had a LP about exactly a year ago to check the pressure/fluid in in my brain. I had bad back pain for 2 days that started going into my neck and up into the back of my head, I realized that was not normal and went to the ER. I had a spinal (CSF) fluid leak. If it gets worse def go to your closest ER. It’s only in like 30% of cases but of course I was not only one the 30% who got it,I also got intracranial hypertension from an acne (antibiotic) med Minocycline which is also a very low percentage. But it is the most common med to cause IIH they said. Though IIH is idiopathic that’s what they assumed caused it. But I was on and off that since I was 17,and I’m almost 27. My eye sight started deteriorating when I was 18,had 20/20 vision before that. I can’t help but speculate it was all when I started that medication for the first time. I was diagnosed almost exactly a year ago with IIH after a routine eye exam led to then finding my optic nerves were hemorrhaged due to the IIH. Phew has it been a year. I took i diuretic for about 5 months and the pressure went down. But I need to lose more weight also, I gained mainly from my bipolar medications but lost 15 slowly like they told me but then gained it back over the holidays. Slowly losing now though again. I see a Neuro Ophthalmologist out near Boston (I live in Western MA) and have a checkup again soon to test the pressure through my eyes 👀I don’t think I’ll ever do a spinal tap again after my horrible experience,especially if for my condition they can test it through my eyes & the treatment is the same no matter how high the pressure is,Diuretic. Anyway,that’s been my experience but I definitely want to hear some other peoples stories about diagnosis/journey as well :) ❤️❤️