Dizzy, dizzy, dizzy

Something strange has been happening for a while. I would say about the past 8 months, off and on, I have been having a very strange and un-nerving symptom. It is something that only happens at night; when I sleep...and only when I sleep on my back or my left side.

Like a car, I am always having a symptom that makes me stop, look and listen (listen to my body) to try and decipher what it was I just felt or heard or whatever. I get strange feelings and symptoms often. It has become a regular part of my life to stop and analyze what it was that I just felt, and "why" I may have just felt it. It can be frightening and annoying in the same aspect.

Several months ago, this odd problem began. It tall began one evening, late around 11:00. I was sitting at my computer and in pure exhaustion, had dozed off....sitting upright. I awoke to a strange feeling like my brain was twisting into a knot; starting at the bottom of the brain and working its way up. Once the twisting reached the top of the brain, an incredible dizziness came over me, spinning me as if I were in the teacups at Disney. It was frightening. I became extremely dizzy and weak, hardly able to lift an arm. Walking was almost out of the question....I stumbled and fell into the wall, trying to get upstairs to bed. My head was shaking uncontrollably like I had Parkinson's or something. I almost dialed 911.

When I finally made it to bed, most of the harnest symptoms subsiding, I finally dozed off with thoughts of "what the hell was that?" in my head. Later that evening, another episode happened, almost identical to the first. This went on for a few nights; but never during the day. Only when I slept, and would soon realize, only when I laid on ly left side or back....never my right side. So I avoided those positions.

Eventually, after about a week of this happening, the odd-nighttime symptoms subsided. I thought they were gone for good and chalked them up to being overtired or something. But they would return and I didn't know why. This has gone on throughout the the year, periodically returning for whatever unknown reason. I do not have any idea, or thoughts on why this happens, what initiates these episodes, or what makes them subside, when they finally do.

I thought they were nocturnal seizures. The dizziness, the shaking, the weakness and numbness. I suppose they could be and need to have this looked into because they are still happening....as a matter-of-fact, they are going on now....last night and the night before. I am anxious, as always, for them to pass. And until I have them looked at, I will have to go through my regular routine of bolting upright, grabbing my head to stop the spinning and hanging over the sink or toilet just waiting to be sick.

The joys of neurological problems.

To Get Chiari Surgery or Not to Get Chiari Surgery

When I was diagnosed with a chiari malformation in October of '06 I was devastated. I knew exactly what that meant, that my brain stem had herniated into my spine. I was also aware of the symptoms that a chiari could bring and was already living with many. It was the reason I was almost falling down all the time, the reason I had such horrible nausea, and the reason my right eyelid was sagging. And I had excruciating pain on top of my head that felt like someone had taken a good shovel to my head. I was miserable. But at least I knew now. I now had a diagnosis, that for months I had to guess as to what was wrong with me.

My chiari was not one I was born with, a congenital chiari. It was an acquired chiari, meaning that it developed due to other reasons. And my reason was my shunt. For several months my shunt overdrained and caused me to lose precious cerebral spinal fluid. With that, my brain began to sag and the brain stem fell below the skull line and into the spinal column leaving me with unbearbale symptoms at times.

After living with this condition for nearly four years, I am done. My balance and dizziness drive me crazy. I am tired of feeling like I am on a boat all the time. So I am looking into corrective surgery to be done at the Chiari Institute in New York. I have been recommended the Institute by my neurosurgeon at Duke University. I will follow his recommendations and send the institute all my records and films and let them review my case to see if I am a candidate for the surgery. If not, I may just have to live like I have been and try to find a way to make peace with my body and my brain.