I'm a newbie here so I will introduce myself: I'm a seventeen year old girl from the netherlands with IIH. I am so glad to have found a place to talk to others who are going through the same thing! I first started getting sick when I was 13. Severe fatigue, menstrual irregularities and often headaches. The doctor said it was just puberty so I pushed through it, but then, BAMN. One day, easter 2015 I was 15 at the time, I came home from school and had the worst headache I could ever imagine. It hasn't gone away since, I'd say, even with pain killers, it's always somewhere between a 4 and a 9. Going to school, or most days going anywhere, is not an option.
It took me a little over a year to get the right diagnosis. During this time I saw all kinds of horrible doctors; from one who told me I was perfectly healthy but maybe I'd feel better if I wasn't (slightly) overweight (had I tried weightwatchers?), to one neurologist who willfully gave me the wrong diagnosis (pressure headache) because he'd rather I'd spend my life in untreated horrible pain then admit he didn't know what was wrong. He even tried to get me and my parents to sign a legal document, so we couldn't file a malpractice lawsuit if we realised what he did.
I was misdiagnosed with pressure headaches due to a past infection about three months in. The doctor (a pediatrician) told me to push through the pain, the more pain I had, the harder I should push. It would make me better. So that is what I did for the next six months. I pushed right past the breaking point and then a little further still, until I had to accept it wasn't doing anything, but making my pain worse.
In July this year I saw a doctor who told me he knew exactly what was wrong with me: I had IIH. I had suspected this for a while especially since all my symptoms completely disappeared after my first lp, but the opening pressure had been normal so if I even suggested anything remotely like IIH my previous doctors would act like I was a crazy, petulant child who had no idea what she was talking about. I was put on azetazolamide. It helped a little but not nearly enough, so we have been increasing the dosage every 6 weeks since the summer.
The meds still aren't working nearly good enough so I was referred to a neurosurgeon. My appointment is early tuesday morning, they fit me in right after christmas. And I am terrified. So are my parents (even if my dad will not say it out loud, being the ever calm voice of reason). I am afraid I might not get a shunt but I am also afraid of what it will be like if I do (there is so much that can go wrong and it sounds very painful). What was it like for you guys? Can you offer any words of advice or reassurance?
I'm sorry guys, this was supposed to be a short introduction but I guess I needed to vent. I have been very lucky in some respects as well. I have, and I know how unusual this is, no visual symptoms or papilledema!
Also, I have the most incredible family in the world. I have no idea where I'd be right now if it wasn't for my parents and big brother. And of course, our dogs.
I look forward to hearing from you guys, and I'll let you know how it goes tuesday!