Friday, November 9, 2007

Persistent Post Concussion Syndrome

The wonderful thing about blogging is connecting with others who can help you understand some of what you are going through. At the very least, if you can't understand, at least you do not feel alone. There is another little life boat bobbing on the waves out on a dark, vast sea which you cannot see, but you can sense because you are connected by the thread of a keyboard. The lifting of the waves causes your boat to tug at their skiff once in awhile and the valleys on the ocean brings about the same pulling at your bow, and you know that you are laced together with someone, somehow.

I wrote last month ( about the deep, dark hallway of sleep I often experience and my online friend Rozanne wrote this to me about her own experiences. She said it was okay for me to share her name and what she wrote with my readers.

I've never talked to anybody very much about this feeling I have about falling asleep, because nobody could do anything about it. It just IS. I suppose you would probably understand more than anybody else.

All my life, until this last head injury, I've always had insomnia. I even saw a specialist about it for over a year and he finally said my body functioned ok on 3-6 hrs sleep a night and to quit frustrating myself over it and just go with the flow. So post injury I suddenly started needing 12-16 hrs sleep minimum and I got a little freaked out about it.

I was continually falling asleep for at least a year afterwards. The pull to sleep was unbelievable...almost irresistable. I had vertigo as part of the concussion so when I closed my eyes it really looked and felt like I was being sucked into a black whirlpool and my sleep was deep and had no dreams. I don't get that all the time now. It seems like when I started getting my energy back that quit happening so often. B-complex really helped that a lot, and helped decrease my pain levels too.

When I woke up I usually felt like I'd totalled a car the day before. I would sleep until the pain was so bad I just couldn't lay down one more minute. I still wake up feeling like that almost every morning, very early. My neurosurgeon said that with my history of insomnia it was just that much more obvious that my body NEEDED the extra sleep to heal, and my brain needed it to make new connections. So he said to give in to that urge to sleep as often as I could.

I remember about 3 months post injury my husband asked me to pick up a xmas giftcard from the mall. I went mid-week so the chaos would be minimal. By the time I got to the end of one wing I had such a strong pull to sleep that I stood in the entryway of Sears and seriously considered whether or not I could sleep on the carpet under a rack of clothes. It looked so inviting (yes, that's desperation) Would security bother me? Mistake me for a vagrant? Would people kick me on accident? or on purpose? Perhaps I was better off laying on a bench in the center of the mall. Can I nap at the SleepNumber bed store? I did not wonder one bit that I could slide right to sleep, right there among all those strangers, right out in the open, on the floor if need be.

Maybe they had a nurse's station...I could stop by Cust. Service and ask...but would they understand how desperate I was for sleep? (at this point I knew I had mild chiari, but not syrinx or PPCS). Instead I walked back out to my car, and the further I walked exhausted, the worse the vertigo got. When I got to my car I laid down in the backseat, gave in to the black whirlpool, and slept for an hour or so. I would've wrecked the car if I'd tried to drive home and napped there, even though it was a mere 5 miles away. And when my husband got home he asks me if I got the giftcard. Oh...was that why I went to the d@mn mall? fudge!

When the Neurosurgeon told me I had what amounted to a concussion that doesn't go away...may never go away...suddenly everything made a lot more sense. Fortunately a lot if it has gone away. :)

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