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Sleep Hygiene Worsening Symptoms?


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#1 ironhands

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Posted 13 November 2013 - 11:07 AM

Talked to my doc yesterday, still nothing rx'ed, but they put me on a strict sleep hygiene program...

 

It's the usual, 30 minutes exposed to sunlight (I bike to work so no issue there), 7 hours sleep maximum, stay out of bed before 11, no caffeine past 4, no smoking past 7, no looking at the clock, regular diet... I think we all know the drill so I'll skip ahead.

 

7pm last night, I was ready to pass out, but I'm not allowed to sleep till 1, could barely keep me eyes open.

 

7 hours of sleep leaves me unable to function, I'm used to 8-9, with 3 hours of lying in bed.

 

Eating during the day leave me unable to focus and sleepier.

 

I normally stay away from coffee, but prior to the doc I had 4 cups, since I had to be up an hour earlier.

 

How am I supposed to keep an accurate sleep log if I don't know what time it is when I wake up, should I just guess based on the past two months of recorded awakenings every 2 hours?

 

My current sleep/wake routine is what's worked for me for the past year... When I wasn't following it, I would have to come home from work, after falling asleep in a car, and nap for 3-4 hours, wakeup for 2-3, and then get another 6-7 hours.

 

Is there a period of adjustment when beginning a sleep hygiene program, or is it just a bad idea to go against what my body is telling me, and what I've found works best?  I guess it might be the right thing to do, if intensifying my symptoms makes it easier to diagnose, but I'm in rough shape today, even after 2 coffee, a 30 minute ride, sunlight, and a meal replacement drink, I'm ready to nap :(



#2 IdiopathicHypersomniac

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Posted 14 November 2013 - 03:55 PM

My advice is to not listen to them, but listen to your body, and sleep/nap when you need to.  Narcoleptics tend to have a natural nocturnal alertness.  It sounds like they don't believe you, or are very conservative.

 

Three years ago I was told all the same crap they're telling you now -- the whole sleep hygiene bit.  I kept telling them that it didn't help.  Now they discover I have cataplectic narcolepsy and will give me just about anything I want, including Desoxyn.  It took three years, and cataplexy, for them to finally understand.

 

If it were not for the cataplexy, they still wouldn't have figured it out.



#3 ironhands

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Posted 14 November 2013 - 04:07 PM

Thankfully, they called yesterday and I'm booked for a PSG/MSLT in a couple of weeks, but right now, I'm pretty messed up.  It's really hard staying focused at my desk, feeling weak, and when I get home I'm having a hard time not climbing into bed until 11ish.  Even then, I don't fall asleep for about 20 mins or so, mind's kinda buzzing, but my sleep latency's relatively normal - that's why I worry about the MSLT. 

 

Given my living situation I can't stay out of my bedroom unless I want to pass the time by watching my fridge in the kitchen or sit on the can in the bathroom :P

 

As far as not believing me, it's tough to say... Without the C, yeah, I can understand, and there are a lot of people in training at this clinic, but given my previous PSG, and other symptoms, there's obviously SOMETHING going on that shouldn't be.

 

Thanks for your support, hopefully I'm in the home stretch now.



#4 Potato

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Posted 16 November 2013 - 04:34 AM

Sleep hygiene is often thrown around as something that should be strictly enforced in individuals with excessive daytime sleepiness (EDS.) The assumption being that any improvement in sleep quality, no matter how trivial, might translate into improved arousal during the day. While it doesn't hurt to try: 1) Narcolepsy is a disorder of wakefulness and arousal, not sleep. 2) Most people suffer from EDS for years before getting diagnosed, and have probably already consciously or subconsciously made adjustments to their lifestyle to maximize the amount of energy they have during the day. 3) If sleep hygiene made any sort of significant impact for PWN, we wouldn't have to be resorting to prescribing these people what amounts to near do-it-yourself at-home anesthesia to force their brains into SWS. -- You can't fix brain damage with sleep hygiene, and that's what narcolepsy and likely many cases of idiopathic hypersomnia and chronic fatigue syndrome boil down to.

 

I have to wonder if sleep hygiene has ever really made any significant improvement for anyone on this forum. It makes perfect sense in individuals with normally functioning brains, but that's not most people here... Has low or no light two hours before bedtime, sleeping exactly the same amount every night and waking up at the same time every day, getting at least 8 hours sleep, not eating or consuming caffeine after a certain time, or any of the other recommendations helped you sleep better at night? No? Me neither. Like you, it just makes things worse in the long run.

 

That's not to say you can't make your situation worse by being reckless with your sleep habits, but I'm pretty sure everyone here is already squeezing as much out of their sleep as their bodies will naturally allow.



#5 Ferret

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Posted 16 November 2013 - 08:33 AM

 

I have to wonder if sleep hygiene has ever really made any significant improvement for anyone on this forum. It makes perfect sense in individuals with normally functioning brains, but that's not most people here... Has low or no light two hours before bedtime, sleeping exactly the same amount every night and waking up at the same time every day, getting at least 8 hours sleep, not eating or consuming caffeine after a certain time, or any of the other recommendations helped you sleep better at night? 

 

That's not to say you can't make your situation worse by being reckless with your sleep habits, but I'm pretty sure everyone here is already squeezing as much out of their sleep as their bodies will naturally allow.

 

Actually, yes, it does make a difference for me and it took a long time to achieve because it requires discipline and patience. So does finding which foods cause you problems.

Those kinds of changes won't change the fact that you're narcoleptic or cataplectic (I'm both) or fix your damaged brain but they go a long way to minimizing symptoms. How the hell do you think I've survived the last 28 years since diagnosis?

I worry about the new culture of the quick fix and what long term/short term damage it may be doing to the brain. "THEY" don't know. "THEY" have learned though, that giving someone four times the Ritalin dosage than is now allowed has detrimental effects...and "THEY" have learned that you can't quit Tofranil cold turkey but must wean off gradually or there will be consequences. That's what "THEY" did to me in '86.

If you like being part of the big human experiment, carry on. If not, look for alternatives if at all possible...or you may not be reporting your experiences on a forum 30 years hence.



#6 ironhands

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Posted 16 November 2013 - 11:08 AM

So Chemist, is it a somewhat safe assumption to conclude that worsening symptoms following a standard hygiene regiment are diagnostically relevant in an N diagnosis, or would it just cross off "bad sleep hygiene" off the list of EDS causes?  It feels like a bad hangover without the headache/nausea.  Just went on a run to the market, my balance and coordination are off, I'd get a few blocks and suddenly have a bit of wakefulness and be hazy on the past few minutes lol.  2 cups of coffee an hour ago too, the whole trip seemed kinda dreamy.  It's 11am, I got 8-9 hours of sleep, and I'm ready to crawl back into bed... only another 12 hours until I'm allowed to.  Then I get to do it all again tomorrow.  Straight up, I feel like death lol.

 

Ferret, I do agree with you... with microwaves, the internet, and 20 minute or it's free pizza we demand instant gratification.  It's all about what's NEW! and exciting now.  I've been looking into alternatives for 20 years prior to my current half-diagnosis, and had little to no success.  Someone even offered to hook me up with some GHB a decade ago... might have been a good idea in retrospect since it's essentially Xyrem anyway, but, obviously, many who self diagnose have a *beep*y doctor :P  

 

All I want is a mild stimulant, and not be a lazy bum.  There's so much I could be doing today, but there's no motivation to do anything but climb in bed.  I want to play video games all day but after about 5 mins, I'm bored with it.



#7 Ferret

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Posted 16 November 2013 - 11:27 AM

Nobody who is Narcoleptic is a lazy bum. Put that idea into the trash.
Absolutely the hardest part is being believed and getting the right Doctor and the right diagnosis. The second hardest part is finding out what works for you and that can be hit or miss and can include medication or not.
It's a crapshoot at best and often comes up snake eyes. That doesn't mean that you quit or give in...NOT EVER.
Get angry, get motivated and be stubborn...and you'll grow up to be a cranky opinionated old lady like me. (not)

#8 Hank

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Posted 16 November 2013 - 12:00 PM

So Chemist, is it a somewhat safe assumption to conclude that worsening symptoms following a standard hygiene regiment are diagnostically relevant in an N diagnosis, or would it just cross off "bad sleep hygiene" off the list of EDS causes?  It feels like a bad hangover without the headache/nausea.  Just went on a run to the market, my balance and coordination are off, I'd get a few blocks and suddenly have a bit of wakefulness and be hazy on the past few minutes lol.  2 cups of coffee an hour ago too, the whole trip seemed kinda dreamy.  It's 11am, I got 8-9 hours of sleep, and I'm ready to crawl back into bed... only another 12 hours until I'm allowed to.  Then I get to do it all again tomorrow.  Straight up, I feel like death lol.

 

Ferret, I do agree with you... with microwaves, the internet, and 20 minute or it's free pizza we demand instant gratification.  It's all about what's NEW! and exciting now.  I've been looking into alternatives for 20 years prior to my current half-diagnosis, and had little to no success.  Someone even offered to hook me up with some GHB a decade ago... might have been a good idea in retrospect since it's essentially Xyrem anyway, but, obviously, many who self diagnose have a *beep*y doctor :P

 

All I want is a mild stimulant, and not be a lazy bum.  There's so much I could be doing today, but there's no motivation to do anything but climb in bed.  I want to play video games all day but after about 5 mins, I'm bored with it.

You mentioned weakness after a run.

 

I am not sure what kind of shape you are in or what kind of runner you are. Exercise, especially a sudden burst of effort, is a significant trigger for Cataplexy.

 

2 years ago I was in an extreme aerobics class. Everytime the jump-rope pace quickened, I became unable to pick up my feet from the floor. Once the pace slowed, my feet worked again. I thought this was an indicator that I was not in good shape and pushed myself even harder.

 

Also, while I am running at a steady pace I am fine. If I speed up or after I stop, my legs get wobbly.

 

I know you have been on the fence about Cataplexy. I am curious if you just experienced it. I hope this helps.



#9 ironhands

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Posted 16 November 2013 - 12:14 PM

"run" wasn't literal, I meant it as in the sense of a trip, but I did bike, slowly.  I normally bike to/from work, about 30 mins each way.  I do get a sudden weakness about 5-10 minutes into it that passes shortly after, i just have to really, really lower my pacing to walking speed.

 

Today is was just poor motor control from the second I got out the door, i've been wobbly all day

 

Yup, it helps!  C for me, if it exists, isn't the traditional drop to the floor kind, and more in line with the symptoms that follow an anxiety episode... feelings of shrinking, overall weakness, but nothing to the point of complete muscle ..uselessness.



#10 Potato

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Posted 16 November 2013 - 03:24 PM

So Chemist, is it a somewhat safe assumption to conclude that worsening symptoms following a standard hygiene regiment are diagnostically relevant in an N diagnosis, or would it just cross off "bad sleep hygiene" off the list of EDS causes?  It feels like a bad hangover without the headache/nausea.  Just went on a run to the market, my balance and coordination are off, I'd get a few blocks and suddenly have a bit of wakefulness and be hazy on the past few minutes lol.  2 cups of coffee an hour ago too, the whole trip seemed kinda dreamy.  It's 11am, I got 8-9 hours of sleep, and I'm ready to crawl back into bed... only another 12 hours until I'm allowed to.  Then I get to do it all again tomorrow.  Straight up, I feel like death lol.

 

Ferret, I do agree with you... with microwaves, the internet, and 20 minute or it's free pizza we demand instant gratification.  It's all about what's NEW! and exciting now.  I've been looking into alternatives for 20 years prior to my current half-diagnosis, and had little to no success.  Someone even offered to hook me up with some GHB a decade ago... might have been a good idea in retrospect since it's essentially Xyrem anyway, but, obviously, many who self diagnose have a *beep*y doctor :P

 

All I want is a mild stimulant, and not be a lazy bum.  There's so much I could be doing today, but there's no motivation to do anything but climb in bed.  I want to play video games all day but after about 5 mins, I'm bored with it.

 

When my physicians were going over sleep hygiene with me they mentioned it takes about 2-3 weeks after starting a new sleep hygiene routine before your body resynchronizes itself, or fails to, and a determination can be made as to whether it's helping at all. That seems to be in line with the general consensus, so I would say it's worth following it for 2-3 weeks just so you can say with certainty whether it helps you or not and don't have to put yourself through it again in the future if it did nothing for you.

 

Also, totally feeling your pain on the lack of motivation. In the event that I end up with some free time or just tire of pushing myself constantly I'll spend a couple minutes looking through my games list being indecisive, then finally pick one, then five minutes into it I think *meh* and go back to being lazy, haha. It's pretty awful when you can't even motivate yourself to do things you usually enjoy.



#11 ironhands

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Posted 16 November 2013 - 03:28 PM

2-3 weeks is my MSLT.  Fun.



#12 Kimpossible

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Posted 16 November 2013 - 08:34 PM

I too have the physical fatigue.  If I exercise, my body completely rejects it.  I can barely walk afterwards.  I hate the people who say, "oh, exercise gives me so much energy!  You just need to exercise!"  

I feel so bad after exercise, I basically have given up on it.  



#13 Hank

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Posted 17 November 2013 - 07:15 PM

I am not sure what you mean exactly by being unable to walk after exercise.

 

Just in case, I will offer my two cents.

 

Exercise increases the occurrence of cataplexy. There were actually studies of this in mice. It does happen to me, so I am careful.

 

Another trigger for cataplexy is a "sudden effort". I can run at an even pace, but a sudden sprint makes my legs wobble.

 

I am curious if this may be part of your experience with exercise.



#14 Kimpossible

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Posted 18 November 2013 - 12:37 PM

It feels like when you've exercised too much and your muscles are really fatigued, shaky.  Only, I haven't done enough exercise to warrant it.



#15 ironhands

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Posted 18 November 2013 - 12:51 PM

that's how I feel a few minutes into my daily bike ride.  Been doing it almost a year now, so it's not like my body is new to the exertion



#16 Hank

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Posted 18 November 2013 - 01:00 PM

It feels like when you've exercised too much and your muscles are really fatigued, shaky.  Only, I haven't done enough exercise to warrant it.

Bingo

 

Here are a few details of my experience with exercise:

- I can swim at a sustained moderate pace. If I swim fast, my legs barely kick and start dragging behind me.

- I can run moderately at a sustained pace. If I sprint or run fast, my legs lose strength and my feet flap instead of spring on the pavement.

- I can jump rope at a sustained moderate pace. If I jump rope fast, I cannot pick up my feet.

 

I will often feel a trembly or flicker feeling, similar to feeling nervous, but without the emotion. When I say flicker, I describe it is like watching a fluorescent light bulb- that rapid flicker that is just annoying. Or like coffee jitters without the mental buzz.



#17 ironhands

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Posted 18 November 2013 - 01:19 PM

I get that daily around 5-5:30. I'd attributed it to blood sugar.  Used to get it at school around 12-1.  Feels like I'm shaking or quivery, but not actually moving.  When it happens during emotion, I'd attributed it to anxiety, I'd be unable to speak, felt slightly weak, but I didn't fall or anything.

 

Last time it happened strongly, I was carrying a lot of groceries home from the store, on foot, right after the doc told me I probably had N.



#18 Hank

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Posted 18 November 2013 - 01:35 PM

http://www.ncbi.nlm....les/PMC2082091/

 

Here is a journal article on exercise and cataplexy- FYI



#19 Hank

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Posted 18 November 2013 - 01:42 PM

I get that daily around 5-5:30. I'd attributed it to blood sugar.  Used to get it at school around 12-1.  Feels like I'm shaking or quivery, but not actually moving.  When it happens during emotion, I'd attributed it to anxiety, I'd be unable to speak, felt slightly weak, but I didn't fall or anything.

 

Last time it happened strongly, I was carrying a lot of groceries home from the store, on foot, right after the doc told me I probably had N.

You are making my point. It took me a while to learn this:

Since it takes so long for a correct diagnosis, many of us have lived with these symptoms for some time.

When we experience these symptoms, we look for a reason. So, we accept nervous, low blood sugar, etc.

We also accept being tired. When we speak with doctors we do ourselves an injustice by being such poor historians of our own experience.

I told my doctor, after the fact, that I never would have complained about hearing music in the morning (HH) since it was not unpleasant. And I never would have complained about occasional clumsy falls (cataplexy).

I did complain about dropping things like a cup of coffee, but I did not report it as "bilateral" which is required to suspect cataplexy.

 

So, while you are in this stage of figuring out, I would suggest sticking with the observations and deferring any conclusions (eg. blow blood sugar). Just stop explaining away "why" it is happening and solely focus on "what is" happening.

 

I hope this makes sense.

 

It is important to know if you actually have cataplexy, since it can turn ordinary events into dangerous ones.



#20 ironhands

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Posted 18 November 2013 - 01:49 PM

I was the same about hearing music and radio announcers before I fell asleep, the other HH.  I rationalized it.  In my mind, it wasn't a hallucination if you could rationalize it - I figured it was white noise extrapolation, the same with my morning visual HH when I have a rough night, I assumed it was just very very vivid dreaming.

 

Thanks Hank!  Now if only I could speak to a doctor who listens to my concerns... but I guess that won't happen until the results of my MSLT are out (I'm having it done in 2 weeks).  I'm still terribly anxious that I won't be able to sleep during the say out of stress.  My normal sleep latency is pretty high as it is; I have trouble slowing my mind down :P