Mild Cataplexy

Cataplexy is a condition that often accompanies narcolepsy. It is characterized by a loss of voluntary muscle control in various parts of the body. It is often triggered by stress and other emotional responses like joy, sadness, or anger.  Sometimes it can be so severe that the sufferer may fall down or be unable to move for several seconds or minutes.

I have never had a severe cataplexy attack where I have completely fallen down, or at least that I can remember. Normally I find myself slurring my words or having difficulty moving, my cataplexy isn’t as severe as some peoples’. Sometimes I will stare off into space and have a kind of scowl on my face, I usually don’t notice it unless someone brings it to my attention though. The milder forms of cataplexy may go unnoticed and many people with narcolepsy might not bring them to their doctor’s attention since they are less obvious. I have also noticed that if I am stressed I tend to be more clumsy and drop things, sometimes I will drop my keys and have trouble unlocking doors like I suddenly lost control of my fine motor skills. My handwriting is also different based on the mood I am in and how tired I am, it is pretty sloppy to begin with but some times it is far worse than usual and totally illegible. I have actually fallen asleep while taking notes in class before and wrote several lines of nonsense in my notebook while sitting in class.

I have also read that cataplexy often affects people with narcolepsy while exercising or playing sports. I have always had difficulty playing sports as far back as I could remember. The adrenaline and energy involved in playing sports can often trigger cataplexy attacks. It isn’t uncommon for someone with narcolepsy to have difficulty with hand eye coordination, this is a problem I have always had. I almost always have difficulty catching and hitting when playing any sport, for a long time I just thought that I was bad at them. I have read that you can even be almost paralyzed when partaking in sports, I remember when I was kid in gym class, I would always freeze up when playing, I would frequently barely be able to move even if a ball was flying directly at my head.

When I am anxious or in an uncomfortable situation I also notice that my cataplexy becomes more severe. I have always had pretty severe social anxiety, when I am in large groups of people, sometimes even people that I know and am comfortable with it feels like my brain completely shuts down, I get a foggy feeling in my head and can’t think coherently, I also have serious difficulty talking and thinking of things to say. I did some research and this apparently is a symptom of cataplexy as well. It is very irritating, I have gone to several counselors over the years about this, and nobody was ever able to give me any real answers or suggestions that worked which is frustrating. I  have also noticed that if I am stressed out at work or if I am having an argument with my wife I also become almost paralyzed and unable to really move or speak, I may just stand around and stare with a blank look on my face for a few seconds to a several minutes. It is annoying because it gives the impression that I don’t care, but in reality it is like somebody pressed the “off switch” in my brain. I have heard of people with narcolepsy completely shutting off their emotions and avoiding all stressful and emotional situations out of fear of having a cataplexy attack. This is something that I have caught myself doing as well, but it definitely is not a healthy way to cope with it. I have heard that some medications such as Xyrem can decrease the amount and severity of cataplexy attacks, I am going to ask my neurologist about it when I see him next month.

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I Know He’s Still In There

It’s getting harder around here for both of us. He doesn’t seem to be getting any relief yet and the doctor doesn’t want to try another medication until he has had his neuro-psych evaluation which is still a month away. It’s hard for me because I feel like I have completely lost my husband, he rarely communicates with me anymore. He tells me he doesn’t know what to talk to me about. That upsets and angers me because I don’t understand how you can be with someone for 9 years and not have anything to talk about. Our arguments have increased ten fold since the diagnosis. We are both are under a lot of stress right now. He is suffering and I am get ready to undergo surgery in four weeks. I am trying to focus on myself and try to help him at the same time. But I get angry when I try to help him because it doesn’t seem like he is trying to help himself any. The arguments happen and then I just drop it. Why fight with him, the arguments is one sided, he just listens and says nothing back. I also drop it because it isn’t helping the matter I’m sure. I’m trying to understand what he’s going through but I can’t. You can never understand what another person is going through. Something I say on my personal blog is never judge the path of another especially if you haven’t walked it. I don’t want to be upset with him. It’s just becoming too much for me right now. I feel like I have a roommate, I’m afraid he doesn’t love me anymore. He says he does but never shows it. I just get upset and angry because I feel like I have lost my husband and that I may not ever get him back. I’m hoping that we can find him the right help and that maybe the person I feel in love with will come back, but for now I must try to love the person in front of me even if he appears to be different because deep down inside I know that my husband is still in there. ~The Ninja’s Wife

Procrastination and Lack of Motivation

This is the first time that I have blogged in almost a month. I am not quite sure why since blogging is something that I enjoy and I haven’t even updated my humor blog: thedingleberry.net either. I have been wanting to blog lately but have been putting it off, I have read that procrastination is a major problem for people with narcolepsy. I have trouble starting projects and keeping up with them. Although I am normally a creative person I have been finding it hard to come up with things to write about lately, although I noticed that if I force my self to sit down and write something, the ideas usually start coming to me pretty effortlessly. For whatever reason it seems to be getting harder for me to blog lately. I updated my other blog almost daily for over a year now I barely update it more than once a month.

I also find that I have more trouble concentrating lately and am zoning out a lot more than I used to. I started taking 200mg of Provigil a little under a month ago and still find that I am having the same if not more symptoms of Attention Deficit Disorder. I am scheduled to have a Neuropsych Evaluation next month so hopefully after that I will be able to get medication that works better. Part of the evaluation is to determine if my ADD is caused by narcolepsy or if it is a coexisting disorder that also needs to be treated. I think that it is caused by the narcolepsy though because some days I have a better memory and am able to concentrate and pay attention than others. Lately I seem to be having severe ADD almost every day which is frustrating, however I started trying to cut down on my caffeine intake at the same time which might have something to do with it. I have heard that the symptoms of narcolepsy are almost identical to sleep deprivation. 8 hours of sleep for a narcoleptic is about the same as 3 hours of sleep for a normal person. It annoys me when people expect me to act “normal” but I wish that they could get 3 hours of sleep a night for a month and then try to function normally, it is not as easy as it sounds. It is hard to explain to people that don’t have narcolepsy, but you know when something wakes you up unexpectedly in the middle of the night and you feel disoriented and are still half asleep and everything feels like it is moving in slow motion and semi-unreal? I feel like that for the majority of the day, which makes it difficult to even focus on answering questions or holding an intelligent conversation. It is very frustrating and most people just don’t understand. I am not sure how much sense that made but some days it seems like even just going through normal everyday things is more difficult than it should ever have to be which is frustrating as hell.