6 replies to this topic

[intothedreaming]

Is it possible to just experience excessive daytime sleepiness without having any sleep attacks at all? My doctor diagnosed me with Narcolepsy but I'm having a hard time accepting the diagnosis because I've never fallen asleep unwillingly in my entire life. Also, Xyrem isn't working for me, and neither are stimulants. Naps also don't do anything for me but make me more sluggish during the day. I'm beginning to feel like I have something other than/in addition to Narcolepsy.

btw, I do have Sleep Apnea and use a CPAP but feel little benefit from it.

[Megssosleepy]

I found that before my Dx I didn't really realize everything that was going on with my body. I thought that everyone felt the same way I did... But, I just sucked lol... Any how Id fight sleep attacks all day long, its almost like a rush of fog that covers me and all I can think about is sleep. But, with that being said I never just fell out like they show in the movies. So when the Doc told me what he thought I spent a long time in denial. Went in for my sleep study and there was no denying it! Ive come to realize that I spend a lot of time in "micro sleep" so I am "awake" typing away... then realize I have no idea what I just did.

I know different drugs work differently for different people. It sounds like maybe you just haven't found the right mix. Also, Xyrem takes awhile to really make a big difference in a lot of people. I am two weeks in and its been a roller coaster. But, I no longer hit the snooze 10 times!

I have found that more often people are Dx'ed as not having N when they really do, I havent heard of any case where it was the other way around... Not having N and the Doc saying you do.

I am guessing you did a sleep test and thats where they came up with the N right?

[Hank]

The first time I was ever asked any questions about sleep, I said I was a great sleeper. I fell asleep as soon as my head hits the pillow. I never took naps. I hadn't dreamed in years. Yes, I felt exhausted sometimes, but I was always go go going. I never complained I was tired. I was so used to pushing myself away from sleep during the day. I did not know how much I avoided settings where I would fall asleep- like at the movies or watching TV. The Epworth Sleepiness Scale was an eye opener- I really thought it was normal. I did not even know I had Cataplexy. I just had injuries from falls I could not explain. I startled too easily and that is why I fell down- it just took the wind out of me. After I began reading and learning more, it was as plain as day. So many mysteries were solved back to age 9 and I was only diagnosed a few months ago at age 45. I did a triathlon last October before I was tested. How could a sleepy man with weak muscles do a triathlon. It made no sense then and complete sense now. 2 SOREMs at 3 min, slept 5 naps with latency 5-7 min. And Cataplexy plain as day, now that I knew those daily events were symptoms. I would suggest asking more questions like you have already begun. You will find your answers either way.

[intothedreaming]

I am guessing you did a sleep test and thats where they came up with the N right?

Yeah, I went through the study and it was confirmed to be Narcolepsy. I just don't know whether or not the medicine I've tried simply isn't working or if there is something else that has yet to be addressed/diagnosed. After my initial sleep study I was told I only had Sleep Apnea, but after months of using my CPAP I was still experiencing EDS. So I did another sleep study and that's when they added Narcolepsy to the list. So, would it then be far-fetched to think that perhaps there is another medical condition keeping me from finding relief from tiredness? Something I keep coming back to is getting my thyroid checked, as most of the research I've done names that as possibility when concerning tiredness.

[Hank]

Yeah, I went through the study and it was confirmed to be Narcolepsy. I just don't know whether or not the medicine I've tried simply isn't working or if there is something else that has yet to be addressed/diagnosed. After my initial sleep study I was told I only had Sleep Apnea, but after months of using my CPAP I was still experiencing EDS. So I did another sleep study and that's when they added Narcolepsy to the list. So, would it then be far-fetched to think that perhaps there is another medical condition keeping me from finding relief from tiredness? Something I keep coming back to is getting my thyroid checked, as most of the research I've done names that as possibility when concerning tiredness.

As long as the hood is up, why not check all reasonable possibilities. My primary care physician is very thorough. Before my Dx through a specialist, my FP checked all my levels: thyroid, testosterone, liver enzymes- as well as vitamin levels. She found low Vitamin D, even though I get lots of sun- apparently this is common in people with autoimmune diseases. I have since overhauled my diet, added supplements and removed coffee. Exercise really does help me. I don't know what medications you are on, but I am still working on adjusting all those details. Xyrem is working out great- it just takes time to rise to the right dose. Now that doctors are listening to me, I feel like I have gained a lot of credibility when I raise a medical concern. If I complain it is for a reason and they need to work toward a reasonable solution. I hope you find the answers.

[Megssosleepy]

Yeah, I went through the study and it was confirmed to be Narcolepsy. I just don't know whether or not the medicine I've tried simply isn't working or if there is something else that has yet to be addressed/diagnosed. After my initial sleep study I was told I only had Sleep Apnea, but after months of using my CPAP I was still experiencing EDS. So I did another sleep study and that's when they added Narcolepsy to the list. So, would it then be far-fetched to think that perhaps there is another medical condition keeping me from finding relief from tiredness? Something I keep coming back to is getting my thyroid checked, as most of the research I've done names that as possibility when concerning tiredness.

From what I have heard most people have mild Apnea, and Docs always want to use that as the excuse. I also had all those blood test to check for everything and anything that could make me tired, and then had the sleep test. I would def. look into having your thyroid checked really easy blood test... I am not sure what meds you are taking... but from what I have heard no one gets complete relief and you need to keep trying different combos till you find one that works best for you... ive tried 6 different pills!! So far Xyrem is my savior! Ive been on its for just over 2 weeks, and I can tell my mood is improving, but my C and EDS not so much!

Ask, search, beg for answers... knowledge is power... also acceptance will take you very far. Ive only just started to really except this Dx, and now am working to improve the life that I was given!!

[sleepylune]

Don't ever stop looking into other things that could be contributing to your sleepiness. My discovery kind of went the other way around, being diagnosed with everything else and still being so tired until FINALLY after years of telling my doctors I wasn't making it up, I was diagnosed with N. It's true, other health issues contribute to sleepiness. I have severe allergies and asthma, which make me tired. I wasn't eating well and I was stressed, which made me tired. Look into every possibility and get second opinions if needed. For me, like many of us I'm sure, when I get sick or something else is out of whack, my narcolepsy gets worse. Diet and exercise are major factors in feeling better; remember that food is our fuel and eating poorly does nothing to give us energy.