hello, my mother was diagnosed with IIH around a year ago. at first she had horrible headaches and the doctors kept brushing it off. eventually they did testing and she was diagnosed. later on - i’d say 6 months after, she started to act like very odd. she couldn’t color in the lines, she couldn’t get her words out half the time. after fixing her medications ( or so they thought ) she got a little better. she’s always suffered from the headaches and they’ve never gone away. she had her surgery from the shunt in January of 16. she recovered very well and was doing good. she is now diagnosed with lupus. my mother has had multiple spinal taps and blood patches. she suffers from a blind spot. most days are good but bad days are truly bad days. does anyone have any ideas how to ease those days? i live with her and we get along and talk all the time but i just need some advice as to help her. she cannot get insurance because she’s a CNA and unfortunately it’s too hard on her body so she’s cannot work in a facility - or should i say she shouldn’t. i worry often for her. she does home health care and the insurance isn’t good. she can’t get medicate because she makes too much and disability can take years. she’s only 40. i pray i get to be half the woman my mom is. she is the most incredible mom - she’s selfless in so many ways. my heart goes out to anyone with this disease. i see my moms face on bad days and i see the stress it causes -i wish that on nobody. you all are so so strong , i hope you know that you truly are IIH Warriors. i wish you all a happy healthy life. if anyone has any advice or any ideas feel free! i’m looking to learn more about this disease and to learn about people’s stories. any advice is appreciated.
Hi all, I was just recently diagnosed with PTC and had my first spinal tap this morning. My opening pressure was 33 and they drained it down to 20. My pulsatile tinnitus is still whooshing (I was hoping that the drainage would make it go away), but right now I have really severe back pain from the spinal tap. Fortunately so far at least I don't have any severe headaches, but even getting up to go...
Hi Everyone,I am a bit confused after having an LP yesterday. The radiologist who did, or rather his attending (long story perhaps when not is as fresh and upsetting i'llpost details)said it was normal 8. the range is 8-15 Google seemes to agree. my neurologist says the range is 5-20 so 8 is low normal. i should try going off 40 mgs Lasix (I was taking for migraines).