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Narcolepsy/cataplexy
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gingerbaby92 posted:

I have suffered from sleep disroders my whole life. When I was 10 years old I had a type of sleep apnea called Hypopnea. Every night would result in me seeing spiders and snakes and getting out of bed screaming and running away out of terror. After months of this happening I went to a sleep Dr and had a sleeo study done, they informed me of what I had and that my tonsils were blocking my airways. After getting my tonsils removed my sleep problems got a lot better, although I always talk in my sleep. When I started getting older I began seeing things, I would be asleep with my eyes open and see the ceiling falling on me, babies falling from curtains, and sometimes people in my room. Not only would I see these things happening but I would react to them, which always resulted in me running out of my room sometimes falling or not seeing the things around me and running into things. These hallucinations have become a nightly thing and are very scary. Along with this I had suffered from what I always thought were panic attacks. When I was in the car one night my hands got really cold and starting shaking and all of a sudden I couldn't hold my head up. It felt like I lost control of my body and couldn't hold anything up. This feeling went away and within a few minutes came back. I got out of the car and could barely walk I just couldn't control my body. When I loose control of my body I will start shaking uncontrollably. To someone else it looks like I'm having a seizure. I was hospitilized for this because noone knew what was going on. Noone found anything wrong with me, not in brain or heart scans. After all of this I still do have them I can feel the cold coming on and If im standing up someone has to catch me because my legs won't work. Im awake the whole time and feel absolutely fine. I never thought narcolepsy could be a possibility but after seeing a dr and scheduling a sleep study he thinks it may be a possibility. I never though it was possible because I was very uninformed on what it was, I always heard about the stories were people fall alseep constantly mid sentence. I don't fall asleep mid sentence I'm just tired all the time. I'm 19 years old and thought that it was natural to always be tired and to be able to sleep all day. I hate it because i can easily sleep until 2 in the afternoon. I don't want to sleep my life away. I'm schedule for a sleep study in a month and a half but I'm just really unsure of all of this. When I talked to the Dr I didn;t really get to talk about a lot of this. I just wonder if it really is a possibility that I could have both cataplexy and narcolepsy or if it is maybe something completely different. Thanks
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revisionarywoman responded:
I can empathize with you after struggling with narcolepsy for many years. I'm so glad you're going in for a sleep lab study. That should help to clinch the diagnosis. It sounds as if you're free of the night terrors now that you're an adult, and hopefully you'll find out that you don't have a problem with apnea as you apparently did before your tonsillectomy. I'm not an MD, but just from the reading I've done, if I heard your description of those spells of sudden weakness, I would think "cataplexy," not "panic attack." In any case, if you do find out that you have narcolepsy, possibly with cataplexy as well, there are some medications that can be pretty effective in helping you live with less disruption in your life. I hope that after the results of your sleep study are in, your neurologist will be more receptive, or will have more time, to talk things through with you. In my own case, medication has been very helpful (although there is no complete cure), and I have gradually gotten better at managing my sleep. I guess I have also gotten a little more "philosophical" -- I have faced and accepted the fact that I may still have an uncontrollable sleep attack now and then. It also helps to have a definitive diagnosis -- I was so confused and upset when I started having these "doze-off{" episodes in my early twenties, not having a clue what was happening to me! Now I know that I have a specific disorder, probably having to do with abnornalities in brain hypocretin -- nothing critical or fatal, nothing psychological or "all in my head"; just something to be managed, with my physician's help, as routinely and intelligently as possible, while keeping myself informed about new developments in sleep disorders research which might potentially benefit my condition. All best wishes to you -- you are doing the right thing to take good care of yourself by seeking expert evaluation.


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