Drain my Brain, please!

One of the complications that many of us EDSers/chiarians deal with is high intracranial pressure.  The cerebral spinal fluid accumulates in our brain, builds up and puts too much pressure around brain tissue.  There are different treatments, depending on the cause.  For some, having surgery to correct whatever is blocking the flow will lower the pressures.  For some, medications such as diuretics will lower the pressures.  And, for some, shunts are inserted to drain the excess fluid and keep the pressures down.

I have high intracranial pressures, also known as intracranial hypertension (IH).  I have too much fluid circulating in my brain and its making me more sick.  I take 2 different medications, Lasix and Diamox, for this.  There are plenty of risks to both of these meds.  And, there are side effects that come with Diamox, including neuropathy, that drive me crazy.  But, I'd rather have neuropathy in all of my extremeties than deal with high pressures.  Why?  Let me tell you what it feels like when the pressure is up.

Have you ever had a migraine?  One of those miserable headaches where you feel every heart beat and want to puke and just need a dark room?  That's sorta what this feels like to me.  I get a headache.  It starts like a migraine.  But, then it grows.  My entire head pulses.  It feels like something is pressing against my skull, my face, from the inside.  Eventually, I have trouble holding my eyes open.  I can't stand to eat and I want to puke but know that would make me worse.  I have a lot of trouble thinking clearly.  My reflexes slowly leave.  As it gets worse, this "migraine" moves through my body.  Everything else starts to behave a little bit wrong.  My heart and vital signs are affected, I breath much deeper, I develop tremors and twitches.  It starts to feel like I really am dying.  Or, hurts bad enough that I want to.  I've tried everything from migraine meds to pain pills to ice and heat and dark and sleep.  Nothing fixes this pain except one thing....diuretics.  Pills meant to pull the excess fluid from your body.  They move some of that fluid from my body and my pressures come down and I can function again. 

So, when you hear mention of someone's pressure in their head, this is sometimes what they are talking about.  High intracranial pressures, aka intracranial hypertension, aka idiopathic intracranial hypertension, aka pseudotumor cerebri.