I would love to talk with someone who have gone through the

I would love to talk with someone who have gone through the diagnostic processes...I am thinking about doing a blood test, and maybe a couple more sleep studies. BUT, I am thinking that I might be able to control it by changing my lifestyle. When I changed my diet it made things a TON better....does it actually help to know whether you have it or not? I'm thinking it would, but I don't know if I want to go through the hassle of all those studies....I'm going to talk to the sleep doctor on the 30th...I want to have a handle of what I am thinking before that appointment. I sleep without waking up usually, but I wake up exhausted and stay that way pretty much all day long. Sometimes I need to have over 15 hours of sleep before I feel refreshed.

I've been diagnosed with narcolepsy recently and knowing I have it has helped me tremedously. I understand you have daytime fatigue, and you need a lot more sleep than the average person to feel rested. Have any other narcoleptic symptoms?

@lstarrchild @lstarrchild Well I do have frequent leg movement (FLMD), which is a symptom…I also have sudden sleepiness for no reason (I even take micronaps at red lights at times). It doesn’t matter how much or how little sleep I get, I still wake up feeling exhausted and stay sleepy all day long, struggling to focus. I can usually fight the feeling, but it comes back every couple hours. I find that I have a fuller recovery from the sleepiness when I sleep about 15 minutes. If I sleep any more than that, it ends up being at least 2 to 3 hours. I can sleep a total of 15 hours from the night before and naps; and yet, I am fully exhausted and ready to sleep when it’s bed time again. I often fall asleep while reading; which isn’t good since I am a full time university student. The PLMD was diagnosed by my doctor, and I have the option to continue. But, what if I DON’T have narcolepsy? I sometimes think it would be better to just deal with it, rather than go through all those tests only to come through “normal”. Then what will I do? I have had test after test after test for several years, and they still haven’t figured it out. I know deep down that I want the answers. I just don’t know if I want to go through all that hassle. At this point, I am helpless, and just sick and tired of being tired. I have been this way for nearly a decade, since I got whooping cough my senior year of high school. I have better luck when I don’t have to get up at the wee hours of the morning; and I also have better energy/mood when i don’t eat wheat. I have read that these things may contribute to narcolepsy because narcolepsy is basically a neurological disorder that has excess in a certain hormone that is also increased when there are excess amounts of wheat antibodies due to excessive wheat consumption in a body that rejects and attacks wheat as if it were a foreign object or virus. I’ve done a lot of research, and would rather not take pills if I can help it. But, if I can make myself feel better by doing all of that, are the tests REALLY necessary? Is it worth setting aside another day and another night, and is it worth yet another blood test? If they don’t find answers, I am truly lost…I will have to just accept the fact that “it’s all in my head”. I don’t want to do that. It might be easier to just say that there is a chance I have narcolepsy. “sigh” decisions, decisions…

One way to diagnose narcolepsy is a spinal tap, and I believe that is the only definitive test there is. I have narcolepsy and I have all the same symptoms you have, but I didn't know about wheat. I was able to be diagnosed through a day study; which is 4 or 5 naps through the day. Doctors and tests are a huge pain so I understand your frustration. I really don't think it's all in your head, I think you probably have narcolepsy. Would you be willing to try the spinal tap?

@tovarvigo
Also, are you seeing doctors that specialize in sleep disorders? Are you visiting a sleep clinic or a neuro diagnostics section of a hospital?

@lstarrchild I think I'm seeing a sleep clinic. It's SW Sleep in NM...I live in a small city, so don't really know what my options are. The doctor who owns the sleep study is my family doctor's husband, which is why she recommended it. If I do have Narcolepsy it would answer everything that I have been struggling with. I mean, in people prone to Narcolepsy, it is often triggered by a virus. I have had these issues ever since I got Whooping Cough at 17. I was extremely ill for over 2 weeks with a really high fever. Needless to say, my mom refused to take me to the doc, because she didn't believe in insurance and didn't have the money for a visit. I have had these issues ever since then. In fact, for the following three or four months I could barely get out of bed just to go to the bathroom, and take a shower in the morning. It really sucked because I spent the entire summer just sleeping and barely eating anything because I was so exhausted that it was hard to eat. My family was running their own life, and I had to make my own food if I was hungry, so it just took too much energy. I have been tested for so many things and all came back "normal". If I actually have narcolepsy it will answer so many questions and help me cope with my future. I'm studying to become a Naturopathy Doctor, and have just been forcing myself to stay awake and studying during the most prime times when I didn't lack as much focus. But, it's still tough. I'll let you guys know what happens after I talk to the doc! Thanks!

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@tovarvirgo Try getting a MSLD scan. It can also determine whether you have narcolepsy. That is the easiest way to get it. They simply connect sensors to your head and let you take four 15 minute naps and look at your sleep patterns. Hope it helps

Keep us updated I wish you luck!!

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