Hello everybody!

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!

hi, and welcome to the site.  so sorry for what you have endured.  it's really not that different from most of our stories.  very common to be downplayed by everyone.

I also do not have papilledema nor does anyone else in my family.  my son has this, and I'm sure my mother does as well but she will only go to naturopaths.  my ICP was 23 and my son's is also and many have not wanted to believe it's IIH.  there is a paper you can find online by Higgins, search IIH and chronic fatigue syndrome.  you can see that 80% of these people had resolution of symptoms after an LP even though most of them had "normal" ICP.  obviously our understanding of disorders of intracranial pressure is in the dark ages.  if your ICP is "normal" and you don't have papilledema, I doubt the neurosurg will want to shunt you.  and I don't know that that is the best option for you.  I haven't had a shunt so I'm not a good person to ask about it.  if I were you I would try to get skinny and also get tested for obstructive sleep apnea and deal with any sleep issues you have.  also go on a very natural diet and eliminate gluten.  then see where you are at.  my son gets a great deal of relief from having osteopathic manipulation treatments.  it's osteopathy in the cranial field, a specialized form of osteopathy.  I got skinny by accident after my last relapse, due to how sick it made me, but even skinny I felt horrible.  for me it wasn't weight.  but for many it is, so it's worth a try.  I went into remission after jaw surgery for my OSA.  I decided to do it because I suspected it would help me and I didn't want to have a shunt.  it brought my ICP from 23 down to 14, even though it didn't completely fix my OSA.
Deb

Welcome to the forum!!! I'm sorry to hear you've been forced to endure this horrible pain, but hopefully you're on the right track now.

There are a lot of different things that can cause IIH and it affects everyone a little differently, so it can be hard to find the appropriate diagnosis and treatment at first. They do relate it to weight because the majority of sufferers are overweight women in child bearing years, but it affects people of all genders, ages, and sizes. We do recommend trying to lose weight and being as healthy as possible. I found that processed food affects me, so I try to avoid it. I personally gained most of my weight following diagnosis and can't lose it with this exercise intolerance, but feel better than I have in a long time.

If the Diamox isn't working, there are other medications. They are also doing other procedures now, so you do have a few more options depending on your circumstances. I'll be interested to see what the neurosurgeon recommends. I personally had an LP shunt for 13 years, but VP shunt wasn't available at the time. I got the VP shunt last year and feel the best I have since diagnosis. They are also doing optic nerve sheathing for people with vision problems and some stenting, so really depends on whether they can identify cause of IIH and how it's affecting you.

We'll be happy to answer any questions and support you through this process..we've definitely all been there! Good luck, and keep us posted!!!

Take care,
Julie