So You Think Your Head Hurts

Idiopathic Intracranial Hypertension.

Say that ten times fast.  Can you???  It also goes by the name Pseudo-tumor Cerebri.  In layman’s terms it means I have all the signs and symptoms of a brain tumor, but no brain tumor.  Good news no brain tumor!  Bad news you still have to live with all the symptoms of it AND all the symptoms of the medications and medical procedures of the diagnosis. L

What does it actually mean?  It means that either I have too much cerebrospinal fluid in my brain.  Either my body produces too much OR it doesn’t absorb it correctly.  Some people with this disorder get shunts.  There are several types available.  I am not shunted, and hope to never have to be.  There are medications available, and occasionally we get to have spinal taps to relieve some of the fluid to relieve the pressure – YAY (not!). 

What does it feel like to have IIH?  It feels like your head is in under constant pressure.  Your head hurts.  Every. Single. Day.  I’m not talking mild headaches either.  I’m talking migraine level and beyond.  You do somehow get used to this.  Sadly. Have you ever hung up side down as a child?  All the blood rushed to your head and your feels weird and your ears ring?  Yeah…. that’s me when my pressure is up.  No, not blood pressure.  It has nothing to do with blood pressure.  Know what else? I can actually hear my cerebrospinal fluid drain from my head as it goes down the back of skull.  It sounds like pop-rocks or a rain stick.  FUN TIMES!

There is an IUD that has been linked with causing IIH, but I never used that form of birth control.  The other main cause? Obesity. Yeah, because being fat causes everything to go wrong.  I’ve had some horrible experiences with doctors.  I’ve had some tell me….you are fat.  With IIH you have to see a neurologist, optometrist, and neuro-opthmalogist all on a regular basis.  So with just “this” illness I see my fair share of doctors.

IIH has a foundation called IHope.

http://theihopefoundation.net/

Even children who are not fat get this dreaded illness that I wouldn’t wish on my worst enemy. 

HOPE – Hold On Pain Ends!

Someday this will be tattooed on me with the IH ribbon colors of blue & green.