I'm not sure who knows what I have been dealing with over the course of a year. But in a nut shell I had a lot of exacerbation's and have had a lot of sleepiness during the day, needing naps a lot! I have been searching for answers and after several night sleep studies and one day time nap study I finally have answers.
My doctor diagnosed me as Narcoleptic without Cataplexy, I don't have the spells that are called cataplexy where I just seemingly fall asleep with no warning. Mine is classified more of excessive sleepiness.During my daytime sleep study I fell into REM sleep within 5 minutes at every nap time, actually the longest it took me was 4 minutes 45 seconds! The sleep study started at 10am I napped for the 15 minutes (the max they allow, it's how they test) and then every 2 hours after for 5 times did it again. I had a total of 5, 15 minute naps every 2 hours. If you read the definition it takes a person with normal sleep patterns a hour or so to reach REM sleep. It is not that I don't get enough sleep during the night, I do. My brain just tells my body that I need sleep all the time, it's a protein malfunction. It is completely un-CF related, although in the definition is does say it can be caused by a virus during brain development, maybe I had one when mine was developing, it's very possible. I am starting a stimulant pill I will take 2 times a day. The doctor said I should see results within a couple days. And that with my sleep disorder being treated he is optimistic that my overall health will improve, like my PFT's and maybe some weight gain. I have had this feeling something has been wrong for a long time and I would only get so far with doctors. It started in high school, they tested my iron and that was low fixed that and it helped, and then when I brought it up again they blamed hypoxia (lack of O2) and restless leg syndrome, both treated and I had improvement. But it was never enough I have always been excessively tired. Recently some have told me it was the progression of my CF, I had a rough year with my baseline dropping about 10%, I refused to believe it was progression. I am SO VERY THANKFUL TO GOD for giving me my CF doctor who believed in me and didn't dismiss my complaints, and who also happens to be not only a CF pulmonologist but a specialist in sleep disorders as well. I almost cried today and I wanted to hug him, I am just so relieved to have an answer and be vindicated. I am very hopeful and so is Dr. Fitch that the med will help me and I can get some sort of normalcy in my life that is not revolved around whether I need to sleep or if I have had enough sleep. Let me be clear I'm not happy I have this, I don't think anyone thinks I am, but since I do have it I'm just happy to finally be treated :)
In closing I just want to say follow your instincts, and don't back down because a doctor tells you it's nothing, don't leave any stones un-turned! I have suffered a long time and although I'm happy to have answers now, I just wish it wouldn't have taken over 10 years, I believe my path in life may have been different had I been treated sooner. I think of all the things I have missed because of my constant fatigue, that makes me sad, especially things that effected Colton. He begs me every afternoon to not fall asleep, and because I have no control over it I do. I hope now I can spend afternoons with him and have quality son/mom time where I'm not half with it.
Here is the definition from Wikipedia of Narcolepsy
Narcolepsy is a chronic sleep disorder, or dyssomnia, characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work. People with narcolepsy often experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which often is confused with insomnia. Narcoleptics, when falling asleep, generally experience the REM stage of sleep within 5 minutes; whereas most people do not experience REM sleep until an hour or so later.
Another one of the many problems that some narcoleptics experience is cataplexy, a sudden muscular weakness brought on by strong emotions (though many people experience cataplexy without having an emotional trigger). It often manifests as muscular weaknesses ranging from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually speech is slurred and vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. In some rare cases, an individual's body becomes paralyzed and muscles become stiff. Some narcolepsy affected persons also experience heightened senses of taste and smell.
Narcolepsy is a neurological sleep disorder. It is not caused by mental illness or psychological problems. It is most likely affected by a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger during the brain's development, such as a virus.
The term narcolepsy derives from the French word narcolepsie created by the French physician Jean-Baptiste-Édouard Gélineau by combining the Greek νάρκη (narkē, "numbness" or "stupor"), and λῆψις (lepsis), "attack" or "seizure".