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Wednesday, February 27, 2013

How I'm doing today

It was my hope that the results of two recent sleep studies, and the introduction of a better Bi-PAP machine to help me breathe at night would bring about some improvement in my various symptoms. I have seen some changes which might be positive for the long-term, but I'm not seeing any changes that could be defined as improvements.

The remaining symptoms which seem to take turns playing the role of "greatest annoyance" are: excessive sleep, on-going event amnesia, generalized pain (the intensity varies a lot, but it is always limiting my activities), and difficulty focusing (which also varies a lot).

Quality of Sleep
The most positive change after the introduction of the bi-pap machine has been the quality of sleep. I don't really notice that change, because I'm asleep, but my new bi-pap machine records lots of data, and shows a marked improvement since I began using the machine. I also have monitored my sleep using a cell phone app that records sounds I make as I sleep, and graphs my periods of stillness and motion. That data agrees that my sleep quality is improved.

From my perspective, my nights used to pass dreamlessly, in the blink of an eye. Now I notice long periods of time during which I obviously drift asleep and regain conciousness again, but the biggest change is that I dream (or remember dreaming). Sometimes I wake up with inspiration about some problem I've been working on, as I used to experience before my accident.

I'm not despairing of improvement from improved sleep, but it's not happening fast enough to seem like a real solution to my difficulties.

Excessive Daytime Sleep
The patterns that shape my awareness of narcolepsy have changed. I used to feel sleepy all the time, and would go through long periods in which I was repeating actions in a vicious cycle: starting to do something, getting distracted, forgetting what I was doing, feeling disoriented, finding something I needed to do, and starting to do it (repeat). That still happens when I am tired, but not as often, and not as long when it happens. Now I actually feel refreshed after a period of sleep, although that feeling does not last. When I begin to loose steam, I am aware enough of what is happening that I can take steps to prevent extreme confusion. I have greatly increased my use of caffeine, which can help prolong my useful periods of wakefulness, and I have better judgment about when to stop and take a nap.

Hallucinations
A common symptom of narcolepsy is daytime dreaming, or hallucinations. I am a bit surprised at myself for how undisturbed I was about seeing things that weren't there. My psychiatrist was obviously more concerned than me. He had me taking an antipsychotic drug that did stop the hallucinations. I did not mind the hallucinations. I was more impressed that the drug (Abilify) helped me to focus, so I liked taking the drug, but it also caused weight gain that eventually began causing more trouble than it was solving. I stopped taking the drug because of the weight gain. (I have not lost all of that extra weight yet, but it's coming off gradually.) When I stopped taking the drug, I expected the hallucinations to return, but they never returned, and now that I am dreaming at night, I don't think daytime dreaming is likely to happen now.

Amnesia
Amnesia can be difficult to report, because I tend to forget those incidents when I notice it. It imposes itself most noticeably when it affects my sense of reality. For example, this morning, as I was creating the graphic for this post, my daughter walked through the room. I distinctly remembered driving her to work, and it was a shock to me to see her here. Obviously I was recalling an earlier time when I took her to work. Another example of on-going amnesia is that I have started watching a television series that I had given up on previously, because I had seen all of the episodes. I still remember that I liked the series, and I still associate the actors with the show when I see them in other contexts, but so far, not one episode that I have watched recently seemed even slightly familiar. They are all completely new to me. A long time ago I developed a routine of keeping a journal to accommodate my lost event memory. I use Evernote to record my journal information because Evernote indexes that information for me so I can look up notes quickly.

Generalized Pain
I recently added Advil to my morning meds, and Tylenol to my evening meds. Advil has made a significant difference in my quality of life, but it does not allow me to be as active as I need to be. I'm going to focus on loosing weight as my primary strategy to reduce pain, but if that does not work, my next plan is to look into joint replacement surgery.... I am also trying to change my perspective on pain by not allowing myself to focus on it, or any of my other complaints, but instead to focus on what is good in every situation.

Difficulty Focusing
My difficulty with focusing has recently been my most disabling symptom. It is strongly associated with my on-going difficulty with amnesia. It is difficult to focus when you keep forgetting what you were thinking about.... Drugs help to some extent, mainly by enabling me to do more between memory lapses. Keeping notes in front of me at all times helps me to return my attention to the current task when I become distracted.

Conclusion
I'm getting tired again. Soon it will be time for another nap. Below, I (will) have copied some things I recently posted on Facebook that provide a window to see how I deal with various difficulties day by day. I hope this post is helpful to others.

As always, please comment. I especially appreciate suggestions about resources I have not yet discovered.


(part one)
(part two)






 









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I am developing a prototype resources website at http://bit.ly/resourcesfortbi. Please review my plans and make suggestions.

I welcome comments that can help make this site more helpful to those experiencing similar difficulties, or for those friends, family, and professionals who take care of bicycle injury / brain trauma.victims.

Since I want this site to be helpful to victims, I reserve the right to edit comments if they seem to conflict with that goal.

Helpful comments would include corrections of false information, references to local services that relate to my posts, or comments that help me to keep spelling, grammar, and word-choices appropriate and correct. As a brain injury victim, I depend on others to insure accuracy and to spot the kinds of errors that I may not recognize. Please feel welcome to contribute your expertise to make this site effective!