Diagnosis

Okay, so I've had a diagnosis for a week now and just not taken the time to post it.  Actually two diagnosis(es?).  First, I have Idiopathic Intracranial Hypertension, and Tight Posterior Fossa without a clearly diagnosable Chiari malformation.  In plain english, it means that I have non-explanatory high pressure in my spinal chord and around the brain.  This is only compounded by the Chiari malformation which is where my brain has fallen back.  To be an official Chiara malformation, I have to meet very specific specifications - especially with how far the brain has fallen.  However, it is still tight at the base of my skull and an additional cause of symptoms.

They are having me "experiment" now with a medication called Diamox.  Diamox is not a pleasant medicine to take.  It is a huge orange capsule that causes all sorts of funky side effects.  The side effects I have experienced so far are being nauseous, numbing and tingling in my fingers and face (like my lips and nose), fatigue, and I think a little depression.  The side effects are not consistent which is odd to me.  On the way to school, my lips and fingers may be tingly but then an hour later, my nose is numb and tingly.  Later that day I may feel nauseated or extra tired.  But the next day I may wake up and have my hands totally numb and tingly which might stick with me for a few hours or half the day.  I would rather have the tingly feelings any day over the nausea.  Part of my "experimentation" with this medication is to double my dose.  I'm a little hesitant to do that, but I guess I gotta try sometime.  I'm waiting for the "right time".  :)

Meanwhile, the headaches are not as often or as severe.  They told me not to take Excedrin anymore because it causes rebound headaches and to try to keep the pain meds down to twice a week to prevent my brain from becoming addicted to them.  I can take Neproxin (Aleve), or Ibuprofen since they have a lower rate of rebound pain.  I stick to that as much as possible.

I got my IUD removed.  It's interesting what different doctors say about the IUD.  An OBGYN will tell you that there is such a small amount of hormone released it couldn't possibly cause any systemic problems.  My Neurologist will say that it causes weight gain which increases my symptoms.  My Pharmacist will tell you all sorts of things it can cause which certainly could be related to increased intracranial pressure.   I believe that the hormones in an IUD are absorbed into your system and it is going to vary from individual to individual how your body tolerates that hormone.  I do not believe my body tolerated it very well.  But it is hard to go from a form of birth control that is 99.9% effective to a non hormonal form that is 85% effective even if used correctly every time.  Hopefully my fertility will lessen so I will not be as apt to get pregnant so easily unless it is really necessary.  A pregnancy in my state now would NOT be good.  :)

A couple loose strands hanging - what is causing my tachycardia (fast heartbeat), why I have hearing loss in one ear (seeing a Neuro - Otologist in a few weeks), and loss of sensation in my feet.  But those are much more minor things to me and will be taken care of with time.  I get too overwhelmed if I try to look at too many problems together. 

There you have it - my long winded explanation.  I appreciate the notes and emails of support and encouragement.  I really have the best support group!  Thanks everyone!  :)