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Narcolepsy Without Sleep Attacks?


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#1 intothedreaming

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Posted 20 August 2012 - 08:28 AM

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.

#2 Megssosleepy

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Posted 20 August 2012 - 08:59 AM

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?

#3 Hank

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Posted 20 August 2012 - 12:55 PM

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.

#4 intothedreaming

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Posted 20 August 2012 - 04:03 PM

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.

#5 Hank

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Posted 20 August 2012 - 09:09 PM

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.

#6 Megssosleepy

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Posted 21 August 2012 - 10:35 AM

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!!

#7 corey91386

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Posted 21 August 2013 - 08:43 AM

I have similar experience. I can't accept my diagnosis. I also do not have sleep attacks. I do have hh though, and sleep paralysis every once in a blue moon. I am finding out that every case of Narcolepsy is different. I have had 3 studies done. The first 2 were automatic positives for Narcolepsy, the 3rd one Idiopathic Hypersomnia. Talk about messing with a person who can't accept the diagnosis. I too am low in Vitamin D. I also had the gene testing done and did not possess the gene. So who knows!!!! Sooner or later you will figure it out. Stay positive! Depression from this stuff will bury you.



#8 ironhands

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Posted 21 August 2013 - 08:56 AM

I said I was a great sleeper.

 

Lucky you, I'm bad in bed :(



#9 ironhands

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Posted 21 August 2013 - 09:11 AM

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.

 

Hmm, didn't realize this was a year old.  I'm curious, how were you diagnosed?  Based on an overnight sleep test?



#10 Megssosleepy

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Posted 21 August 2013 - 12:15 PM

I think a lot of times the phrase "sleep attack" gets skewed.  I find that even people w/o N have experienced it at least once or twice.  While describing a sleep attack or my EDS to people w/o N I describe it like this...

 

" you know when you are really tired and you are driving, and for some reason all you want to do is close your eyes?  you are so sleepy that nothing will keep you awake?... this is a sleep attack."

 

A sleep attack for most people with N is NOT  randomly falling asleep!  I CANNOT stress this enough.  Yes that can happen, but I wouldn't call it random... its more like... "I am so so so so sleepy I really want to go to sleep, I hate staring at the computer screen, gosh it would be nice to just close my eyes, crap I just cannot keep them open, and zzzzzz" 

 

It is not "Hey Grama haven't see you in a long time, how are... ZZZZZZ"

 

 

I think TV/Movies has made it very hard for use (people with N) to except the fact that we do indeed have this crap.  I go back and forth regularly... really more in hopes that its not true.  But, ive had C, I have HH, I have SP, I have EDS... blah blah blah

 

 

Oh and one more note... I know this post is old, but Ironhands- How long did you try Xyrem?  For me I didn't really think it was working either... except that it keep me asleep all night.  When I had to go off it (due to the fact it became less effective) I realized just how much it did for me!! My EDS is so crappy, my mood has declined again, and I haven't felt as healthy, ect
So even if you don't feel "cured" there is a chance it is doing more than you think. :)


#11 ironhands

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Posted 21 August 2013 - 12:28 PM

I tried it for 0 days.  I'm not officially diagnosed yet, I don't think I'll need Xyrem, I'm going to ask for modafinil because I think it'll work all around for the depression and EDS.  I don't think there's any explaination other than mild N for the REM latency issues I have, since I generally get a full 7-8 hours a night, other than 1-2 wakeups.

 

Were you actually asking intothedreaming?

 

I don't get many slep attacks now, until I'm home, or on the weekend.  At work I can keep myself awake pretty well, getting up to walk around when I need to.  It was way worse when I was on ritalin and citolopram.

 

I've been working hard to promote wakefulness, I've cut out sugars, gluten, I'm taking vitamins, I bike about 5 miles a day, but I'm still exhausted :(



#12 IdiopathicHypersomniac

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Posted 22 August 2013 - 09:50 AM

Only severe narcoleptics fall asleep without warning.  When you're in the development phase of narcolepsy, which can takes years, it just shows up as hypersomnia -- you're sleepy on and off during the day but you can fight it.  The rest of the time you're just exhausted and without energy.



#13 sk8aplexy

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Posted 22 August 2013 - 01:43 PM

Until around a year after my first sleep study (age 29), being around 10 years after beginning to collapse from Cataplexy, I'd thought I was experiencing real body fatigue. 
Being involved in physical sports as well as at the time physical labor, I had no idea I was severely tired, of course I was often exhausted and by most considered not only lazy as well as odd, but also tired.  It was quite shocking to realize, but as I've juggled things (to do with lifestyle), I've found myself in a much better place; although I now do note the tiredness very often.

 

As for sleep attacks, never had difficulties with them prior to the last couple of years, as things/symptoms have flipped and flopped.  Yes, I'd doze off a bit and if it had been a long day and/or was real real late, at times I would doze off.  Never, still to this day (age 33), have I just cold clonked out mid conversation; although by myself that's a different story (again, these days especially). 

Cataplexy I've managed to minimize dramatically, and hardly experience much these days, yet I hardly engage with others and know my boundaries/limits well, which I generally stay entirely within.

 

Energy is not what it was years ago though, a part of that has to do with me not pushing myself like I used to, I have near no desire to partake in the 'normal' expectations/routines/procedures which others seem so happy abiding by, or living up to...