10 replies to this topic

[popsicle1010]

I have had sleep problems since adolesence but have never even considered narcolepsy as a possibility until I recently watched a real-life program and noticed that the narcoleptic woman looked and behaved when off her medications almost exactly like I do in the mornings.

 

However, once I am really up for the day, I do not have EDS or sleep attacks unless I am sleep deprived.  

 

I do have an excessively hard time waking up, pretty much regardless of when I go to bed the night before.  Until I really get up for the day I often experience an overwhelming urge to fall back asleep.  When I do I must go very quickly into REM sleep because I most often experience very vivid dreams during these morning "nap times."  I have also experienced sleep paralysis when trying to wake up in the mornings.  (And by "mornings" I mean whatever time of day I am trying to get out of bed.  On bad days this might be in the afternoons.)

 

I have never had an unmedicated day where it was easy to just hop out of bed and get going, but some days are less abnormal than others.  The sleep paralysis has occurred during periods when my inability to wake up or feel rested were the worst.  These periods of exacerbation seem to occur perhaps seasonally.

 

I wonder if I have experienced cataplexy.  I have regular episodes of my knees buckling but have never associated them with emotional stimuli.  I never knew why it happened, but it is mild so I didn't worry about it too much.  For other small events I have always just felt I was "clumsy."

 

I know I do not have normal sleep because it has caused me problems or taken work on my part for the past 25 years.  It seems unlikely to me that I could have narcolepsy without the excessive daytime sleepiness.  It feels like a dumb question to even ask.

 

I started thinking more seriously about there being a problem underlying my symptoms after my doctor put me on Prednisone for an extended period of time in 2011 for an unrelated issue (autoimmune).  I found the steroid to be energizing and I woke up at a normal time and felt energetic and rested every day for the first time in my life.  Despite the unpleasant side effects of the Prednisone, part of me really hated to give it up.  I felt for perhaps the first time what I'm pretty sure regular people feel like when they wake up at 8am every day after a normal night's sleep.

 

Does anyone have any feedback for me?  I'm not obsessed about getting a diagnosis if I can focus on a treatment that helps instead, but I don't know if I even feel confident enough yet to bring this up to the doctor.  

 

Thank you!!!

[DeathRabbit]

I suppose that it's possible that you could only exhibit signs in the mornings if you had a very light case of N, but if it's only impacting your life to that extent, I don't think it would be worth the trade off to have to deal with the side effects of all the meds. There are many other medical issues that can cause problems with sleep, as well, so I would look to those first. Hormone issues, vitamin deficiencies, even maybe sleep apnea are probably more likely in your scenario.

[mep]

Today I met with a neurologist who thinks I may have a circadian rhythm disorder (in addition to or instead of N, remains to be seen). So it's possible I'm just seeing it everywhere now, BUT... what you wrote sounds like it could potentially fall into that category. According to my doc, if your body's circadian rhythm wants you to be asleep from, say, 3am to 11am, you're going to feel sleep deprived if you get up before 11am, regardless of how many hours you slept. Since you also mentioned the seasonal aspect, I wonder if you've considered getting a light box to use in the morning?

 

At least in my experience, your primary care doctor is unlikely to know much of anything about sleep disorders. So if you do end up taking this to your doctor, my advice would be to research what type of sleep disorder you think you are most likely to have, and ask for a referral to someone who specializes in that. And unless you think you have sleep apnea, make sure the referral is to a sleep specialist who is a Neurologist, not a Pulmonologist!

 

More on Circadian Rhythm Disorders: http://my.clevelandc..._disorders.aspx

 

Good luck! 

[popsicle1010]

Thank you both so much for your replies.

 

I had always assumed I had a Circadian Rhythm Disorder (or called it being a "night person").  I figured it was just the way I was until I had the experience of feeling differently on medication.  On corticosteroids (Prednisone and later Dexamethasone) I went to bed around midnight and woke up around 8 am with tons of energy every day.  It was the first time since childhood (at age 39) that I can remember having the experience of waking up normally and feeling energetic.  It made the intervening 25 or so years feel very abnormal.

 

Thank you for your posts! 

[DeathRabbit]

Circadian rhythm disorders are common amongst narcoleptics. This is due to the lack of hypocretin, which plays a large role in regular sleep/wake cycles. A normal person's hypocretin level will rise with the sun and set with it. Ours stays at a critical low all the time. I think the reason many of us feel more activated at night is not because our fatigue level is changed, but there's not the contradiction of being tired with the sun shining outside. I swear, sometiems looking at the sun makes me sleepy.

[2Tired4This]

I read that hypocretin levels are supposed to build up the longer you are awake. PWN are supposed to have little to no hypocretin in their spinal fluid which would mean that if ANY hypocretin was being produced while awake the strongest concentration would be right before you go to bed. (at night). Maybe it's possible that you are in the very early stages of N or have a special case where you still retain a small # of hypocretin producing cells and require an extended amount of time to build them up. 

[DeathRabbit]

That's an interesting take. If so, then bulk sleeping is the worst thing for us, I guess.

[2Tired4This]

It makes sense that they would reduce during night time though. How else are you supposed to get to bed? y is the Internet so misleading. Doesn't change the 2nd part of my reply though. 

[Megssosleepy]

That's an interesting take. If so, then bulk sleeping is the worst thing for us, I guess.

 

What's bulk sleeping?

[DeathRabbit]

What humans naturally do, IE: Sleeping 6+ hours a night. Some people have said that people with sleep issues do a lot better if they take 6 one hour naps, rather than slep for 6 hours a night. Psychologically, I know i couldnt handle that though. Sleep is what makes me feel like the day is ended and a new one has begun. The bad times when I first started Xyrem, my sleep felt so fractured that it was like one continuous non ending day.

[drago]

I have had sleep problems since adolesence but have never even considered narcolepsy as a possibility until I recently watched a real-life program and noticed that the narcoleptic woman looked and behaved when off her medications almost exactly like I do in the mornings.

 

However, once I am really up for the day, I do not have EDS or sleep attacks unless I am sleep deprived.  

 

I do have an excessively hard time waking up, pretty much regardless of when I go to bed the night before.  Until I really get up for the day I often experience an overwhelming urge to fall back asleep.  When I do I must go very quickly into REM sleep because I most often experience very vivid dreams during these morning "nap times."  I have also experienced sleep paralysis when trying to wake up in the mornings.  (And by "mornings" I mean whatever time of day I am trying to get out of bed.  On bad days this might be in the afternoons.)

 

I have never had an unmedicated day where it was easy to just hop out of bed and get going, but some days are less abnormal than others.  The sleep paralysis has occurred during periods when my inability to wake up or feel rested were the worst.  These periods of exacerbation seem to occur perhaps seasonally.

 

I wonder if I have experienced cataplexy.  I have regular episodes of my knees buckling but have never associated them with emotional stimuli.  I never knew why it happened, but it is mild so I didn't worry about it too much.  For other small events I have always just felt I was "clumsy."

 

I know I do not have normal sleep because it has caused me problems or taken work on my part for the past 25 years.  It seems unlikely to me that I could have narcolepsy without the excessive daytime sleepiness.  It feels like a dumb question to even ask.

 

I started thinking more seriously about there being a problem underlying my symptoms after my doctor put me on Prednisone for an extended period of time in 2011 for an unrelated issue (autoimmune).  I found the steroid to be energizing and I woke up at a normal time and felt energetic and rested every day for the first time in my life.  Despite the unpleasant side effects of the Prednisone, part of me really hated to give it up.  I felt for perhaps the first time what I'm pretty sure regular people feel like when they wake up at 8am every day after a normal night's sleep.

 

Does anyone have any feedback for me?  I'm not obsessed about getting a diagnosis if I can focus on a treatment that helps instead, but I don't know if I even feel confident enough yet to bring this up to the doctor.  

 

Narcolepsy develops over time. I had sleep paraylsis from a young age, and I had a lot of difficulty waking up in the morning for most of my teen years and early adulthood. (I still have trouble with it, as my 4 kinds of alarm clocks and 7 separate alarms can attest!) I didn't develop EDS with sleep attacks until age 21 or 22. Some people develop earlier, some later... the symptoms can onset over a long period of time (i.e. you might get EDS before you experience a sleep attack, or you might develop hypnogogic hallucinations before cataplexy, etc.) and might not seem to be related.

 

That being said, having trouble waking up in the morning can be a byproduct of many things, including age (circadian rhytms of people in teenage years and young adulthood tend to make them sleep in later in the morning than younger children or older adutls), sleep debt, or other sleep disorders.

 

Also, while most narcoleptics have lower hypocretin levels than non-narcoleptics, keep in mind that Narcolepsy WITH Cataplexy is a very different diagnosis than Narcolepsy WITHOUT Cataplexy (sometimes called atypical narcolepsy). If you don't have cataplexy, your hypocretin levels may still be lower than healthy, but many people who have Narcolepsy with Cataplexy have almost none...

 

Also, you can ask your doctor about possible connections between autoimmunity and narcolepsy - some doctors believe that naroclepsy is caused by an autoimmune response, your white cells attack some nifty brain cells or the hypocretin itself and sad times ensue.

 

Have you spoken with your doctor about pregnisone's affect on your energy levels? It's possible that there are other reasons for its positive affects on you. Steriods reduce inflamation and reduce immune response, which means that any kind of fatigue-causing immune response or inflamation could be causing your issues, too.

 

In short: while some people are "night owls" and others "early birds" or whatever, it's not  normal to require 3 alarms, 2 people, and 1 pet to wake you up every morning, especially not after a good night's sleep. Even if your circadian rhythms are afowl! People with normal circadian rhythms are sleepiest at 2 am and again at 2 pm -- not exactly "obvious" sleep times for most people. So, pester your doctor about this. Don't let anyone dismiss this as "not being a morning person." Especially if you've struggled with it for years... it might not be narcolepsy, but there are plenty of things that might be the cause, like an underlying illness or even a dietary issue. So pester pester pester your doctor about this issue...

 

drago