What it feels like...

I promised a description of what life is like with this crazy thing called Chiari for my non-Chiari friends so that you guys can understand a little more about what is going on.  Well, words escape me tonight to explain "life", so my symptoms are going to have to be good enough.  Funny thing that memory issues and random loss of the ability to connect words is one of the symptoms!!  So, here goes..

Constant headache at the back of my neck and base of my head, not an "I had a bad day headache" but more like intense pressure and tension ache, that on most days turns into a complete migraine halfway through the day or can be turned into a migraine if I strain, tilt my head up for long periods of time looking at a monitor at work, looking up in the sky at fireworks, etc.  These can put me in bed for days and make it feel like my brain is trying to push my eyes out of my head, which I guess literally it is at some level. Exhaustion with chronic joint pain/stiffness, although with my life I am not sure anyone would limit that to being a direct result of Chiari!  Random dizzy moments where the world just goes "Weeeeee" and shifts about halfway around the room and then stops, along with dizzy, the floor is moving feelings every time I change position from sitting to standing, laying down to sitting, sitting to laying down, that one is fun, feels like the old game where we used to make each other "fall through the floor". Very odd changes in blood pressure when my head is turned in certain directions also can be very "fun.". Visual disturbances, floaters and halos randomly, that sometimes make it hard to read print or clocks.   Sensation issues- these used to come as the feeling of ants crawling on me in my arms, hands, legs, and feet, but now they are widespread and often more like pins and needles like when your leg falls asleep type of pins and needles, rather annoying and very painful. Insomnia, although who doesn't fight with that anymore??  Balance issues and depth perception issues, which are a bit hard to accept coming from a former gymnast and cheerleader!! I am constantly running into things, falling over things that aren't there, and misjudging depths when I walk, steps are my worst enemy!  Drops attacks... hard to explain but the best way I know how to is that the floor falls out from under me just for a second and my muscles seem to fail, like I lose all sense of direction and position, and then I am fine the next second.  Sinus issues and difficulty swallowing due to the crowding of everything in my head and neck,  I have become a master at taking small bites and taking crushed pills.   Rocking when I lay down, not I am crazy sitting in a corner rocking, but the feeling of being rocked, EVERY TIME I LAY DOWN.   Hearing my heartbeat in my ears almost all the time, not just when I run or when I smash my ear funny laying on it.  "Brain freeze headaches" every time I yell or laugh.   Boarder line nausea most of the time, again, ANNOYING! Poor blood circulation... I have no idea how this is caused by the Chiari, but my hands and feet are almost always either white or purple!  Memory issues and cognitive deficits due to decreased cerebral spinal fluid flow to certain parts of the brain and abnormal shaping and pressure on certain parts of the brain... and here I just thought I was a scatterbrain. Cold sensation through to the back of my neck and base of head and in my sinuses when I drink anything colder than regular fridge temperature.  Pressure and tightness in chest, especially when exerting energy...I can't even WALK a flight of stairs right now without being short of breath,  and here I thought I was just out of shape.  Rice crispy sound in my neck every time I move it, now that is not only annoying but a little creepy since medically I know what is happening in there to make that noise.

 So there ya go, physically, life for me. I am sure I am forgetting something, but I am a sleepy girl!  Funny that I never knew that most of this was not normal.  I had no idea the brain freeze headaches, the rocking, the heartbeat, the dizziness were problems!!  I spoke with Ron with neurosurgery yesterday and he will call me on Monday to give me my appointment information and back to school for Bouga on Tuesday!! Night night our Warrior family and as always thank you for your continued thoughts and prayers!!