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#1 iturnedintoamartian

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Posted 13 June 2013 - 12:36 AM

There are certain times that I am so tired, it's like I am walking in a dream. Like I am stoned. It's hard to remember anything, it's hard to hold a conversation or to even talk. Usually this lasts for a few hours, usually the hours right before bed. Today it was all day. All day. When it got to the point I could hardly walk, I forced myself to stay awake so I could go to sleep at the same time as my son. And here I am, after 3 hours of sleep, wide freaking awake. I am mad. It would be nice to sleep like a normal human being for once. I'm not always so frustrated with these situations since I have woken up constantly every night since I can remember, but I have been increasingly angry about it recently. So, I suppose I am just venting to get it off my mind.
I have been quite sick and started a second round of antibiotics yesterday for what I presume to be pneumonia exacerbated by an upper respiratory tract infection. I catch the most ridiculous illnesses from teaching guitar to school-age kids. And it just makes my sleep/awake quality worse. So, I am going to lay in bed for another 20 minutes until I finally fall asleep, wake up at least twice more before I get up, just so I can be ridiculously tired all day tomorrow. Ugh. At least I have my polysomnogram/mslt on the 24th, although I have technically been treated for narcolepsy twice, but this is so they agree to treat me again. Not like it matters, though. I lose my insurance on July 1st.
Ok, griping complete.

#2 Hank

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Posted 13 June 2013 - 07:14 AM

My nights have been like that also. I have been taking Trazadone since January. It is an antidepressant that is not often used for that purpose because it is sedating. Instead, it is often used at bedtime for sleep. 

 

For me, Trazadone makes me feel normal. I get a predictably restful night's sleep- something that was foreign to me. I do not wake up until morning, I feel refreshed when I get up. The most important thing to me is that I can rely on a good night. Before, it was anxiety provoking to know that a poor night sleep happened every night- a horrible night sleep could happen any night. After a horrible night, I would be crushed the next day.

 

In my natural state, I do not so much have "insomnia", I just cannot maintain my sleep for long and wake frequently.

 

After your PSG/MSLT there will be options to help you sleep. Just make sure to make a careful decision on what you choose. I hope you get some relief soon.



#3 DeathRabbit

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Posted 13 June 2013 - 10:08 AM

I feel like I've been getting great sleep these past few nights. and about 8.5-9 hrs of it. But without fail, for the past few weeks, I feel great for maybe the first twenty minutes of wakefulness. Then the headaches and confusion set in. I'm so damn tired of this. I've never been suicidal because I have family and friends, but you better believe that if I didn't, I'd be catching the next bullet train to the hereafter. Ah, hell, who am I kidding, I don't have the balls.



#4 TiredAgain

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Posted 13 June 2013 - 03:07 PM

I get the same feeling, It's terrible it's like your walking around in a bubble. Then there are times that I get what I call sleep episodes where I can feel myself moving slowly and talking slowly, these usually only last like 15 mins or so. If I start slurring my words then I have to lay down and sleep it won't just pass.

 

Now with all that said, on a so called normal day when I have the chance to lay down I can lay there for like an hour before I fall asleep (like right now I am laying here watching TV, checking my email). Once I do fall asleep it is never hard sleep and it only last for 10/20 mins. The funny thing is my MSLT test showed one time my latency was 0 mins and the highest 6mins, my REM one time was half a min and the highest 5 mins. After all 5 naps I argued with the tech that I didn't even fall asleep.

 

I don't feel as bad as I did during the test because how do you stay awake if you spend all day in a room or just walking around the test center. I wanted to cry because it was so hard to stay awake.

 

My nights are weird most of the time I fall asleep pretty easy, I wake up a few times, go to the bathroom and then go back to sleep. Then there are times I can't fall asleep and once I finally do I still wake up a few times. Then again It doesn't matter if I do sleep through the night I NEVER FEEL RESTED! I take Adderall to stay awake during the day but it really doesn't help much, my Dr won't up my dose because he says I will be on it for the rest of my life. I have been on it for 3 yrs now.

 

I'm tired, Got to go



#5 DeathRabbit

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Posted 13 June 2013 - 04:28 PM

I think some of us more atypical cases of Narcolepsy can actual exist in a sort of superposition of sleep and wakefulness on a continual basis. And I don't mean in like a cataplexy/hypnagogic sort of way. More like a brown out in your brain. I think it comes about from years of fighting sleep. You force your body to stay awake so much when all it wants to do is sleep, eventually it strikes a compromise. And that compromise blows and makes for even more fitful sleep at night, because your body is like "Oops, I'm going to sleep, better fight it." It's like, after a while, I think neuroplasticity can rewire your brain to automatically resist sleep whenever fatigue besets you. Or maybe it's just a rapid succession of microsleeps. But I had the same thing. I never felt like I slept during my MSLT except for one nap. But I slept four out of 5 with two SOREMs.



#6 Hank

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Posted 13 June 2013 - 06:41 PM

I think some of us more atypical cases of Narcolepsy can actual exist in a sort of superposition of sleep and wakefulness on a continual basis. And I don't mean in like a cataplexy/hypnagogic sort of way. More like a brown out in your brain. I think it comes about from years of fighting sleep. You force your body to stay awake so much when all it wants to do is sleep, eventually it strikes a compromise. And that compromise blows and makes for even more fitful sleep at night, because your body is like "Oops, I'm going to sleep, better fight it." It's like, after a while, I think neuroplasticity can rewire your brain to automatically resist sleep whenever fatigue besets you. Or maybe it's just a rapid succession of microsleeps. But I had the same thing. I never felt like I slept during my MSLT except for one nap. But I slept four out of 5 with two SOREMs.




You described what I have been trying to put into words. Thank you.

My biggest struggle on Xyrem was to stop fighting sleep. It was surreal. I literally felt like I was climbing out of REM. It was, as you said, like I was so accustomed to fighting sleep that I was conditioned to fight it.

I have been slowly training myself to take occasional naps. I also learned from my MSLT that I do not know when I sleep. So, when I nap and "feel" like I cannot fall asleep, chances are I already did.

The quality of my dream seem more like random thoughts, which is deceiving. So, when I nap, I repeat the first line of the Lord's Prayer for a few minutes. Then I have a random thought (REM) and I "feel" aware that it is a random thought and think that I cannot fall asleep. This awareness seems to be what pulls me out of sleep. It reminds me of a meteor skipping across the atmosphere, rather than plunging straight through.

With time, I hope to retrain my brain to accept sleep. I think that is likely considering how accomplished we have all become at compensating for our funky brains.

#7 DeathRabbit

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Posted 13 June 2013 - 08:34 PM

I think muscle relaxers might help. Or some sort of meditation or something. I've noticed, for instance, that when I get insomnia, when I lay there my muscles, especially my facial muscles, default to a tensed up state. It's like they flex of their own accord. I have to concentrate to make them go lax. Which of course is zero sum gain, because then I'm awake concentrating on something. It's usually about this time I go grab a Russian Imperial Stout and down it in two gulps.Then the muscles go slack, lol. But we all no alcohol isn't a great solution, due to the sleep architecture issues.



#8 Ferret

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Posted 13 June 2013 - 09:11 PM

I feel so badly for you guys. Would it be rude to inquire what your med regimes and sleep regimes are? Perhaps we should all put it at the bottom of our posts.
I'm reading a number of posts where people are having disturbed sleep at night or inability to sleep and I just can't imagine it. Lousy quality of sleep yes...waking up innumerable times just doesn't sound right...almost like you're too hopped up to sleep.
The suicidal thoughts are why I stopped taking meds in the first place. IMHO, Ritalin is an upper and Tofranil (the antidepressant at the time for the cataplexy) is a downer. They were fighting within me.
What do you think? I don't need to ask how you feel 'cuz it's obviously lousy. Spill!

#9 Hank

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Posted 13 June 2013 - 09:52 PM

I feel so badly for you guys. Would it be rude to inquire what your med regimes and sleep regimes are? Perhaps we should all put it at the bottom of our posts.I'm reading a number of posts where people are having disturbed sleep at night or inability to sleep and I just can't imagine it. Lousy quality of sleep yes...waking up innumerable times just doesn't sound right...almost like you're too hopped up to sleep.The suicidal thoughts are why I stopped taking meds in the first place. IMHO, Ritalin is an upper and Tofranil (the antidepressant at the time for the cataplexy) is a downer. They were fighting within me.What do you think? I don't need to ask how you feel 'cuz it's obviously lousy. Spill!


Not rude at all.

At night, I take Trazadone for sleep. Usually 2, but sometimes 3. It works like a charm for me. I fall asleep, do not wake up at all during the night, and wake up with a clear head.

In the morning, I have coffee. Then sometimes ice tea a lunch. I have not taken stimulants since I discontinued Xyrem.

I take Effexor XR 150 mg in the morning for Cataplexy.

I have been doing this since January. For the past 2 months, I feel better than I can recall in my adult life.

I sometimes take a nap when I get home from work so I can make it through the evening. I take 1 or 2 naps on weekend days.

I keep a very regular bedtime/wake time and sleep in an extra hour on the weekends.

What are you doing. I am curious since you have been dx's for some time.

#10 Ferret

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Posted 13 June 2013 - 11:05 PM

About the only thing we're doing that's the same is the regular sleep schedules. For me, that has been gospel since 1990. Nightime 11 p.m. 'til 6 a.m. and a scheduled nap from 2 p.m. 'til 5 p.m...unscheduled snoozes for 5 minutes or so can happen randomly. I fall asleep instantly and never wake up during scheduled sleeps.
Awake, I smoke and drink diet coke. It's bad for me but it's a life.
Cataplexy is not controlled and I have a limited social life that is only shared with those I let in and can let my guard down with. My husband is a rock for me.
I just started taking Modafinil...just 1/2 a 200 mg. tablet at 8 a.m. I am more alert during waking times and at waking time. So far, I only have a vague sore throat that is manageable. That pill is making me braver than I've been in a long time. I feel like I can leap tall buildings and anything is possible. I hope I don't crash and burn.
I have copied your regime to a file for future reference...it sounds like a down to earth and logical approach and I'm really glad it works for you.
Extra notes: Modafinil is called Modiodal in Mexico and does not require a prescription...14x200mg tablets cost 523 pesos (12.5 pesos to a U.S. dollar)
Extra Extra notes: Menopause is a *BEEP* when you're narcoleptic.

I have lost friends to various diseases. I'm still here and will survive. Narcolepsy is just a speed bump in my life by comparison. 62 and counting.

#11 lkl

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Posted 14 June 2013 - 05:52 AM

I think some of us more atypical cases of Narcolepsy can actual exist in a sort of superposition of sleep and wakefulness on a continual basis. And I don't mean in like a cataplexy/hypnagogic sort of way. More like a brown out in your brain. I think it comes about from years of fighting sleep. You force your body to stay awake so much when all it wants to do is sleep, eventually it strikes a compromise. And that compromise blows and makes for even more fitful sleep at night, because your body is like "Oops, I'm going to sleep, better fight it." It's like, after a while, I think neuroplasticity can rewire your brain to automatically resist sleep whenever fatigue besets you. Or maybe it's just a rapid succession of microsleeps.

That's exactly how I feel. I feel like my brain is continually fighting sleep and fighting wakefulness at the same time, so that I am stuck between the two, or rapidly switching between being awake and asleep during the day and night.

 

I was thinking about this, when someone posted that study that showed people with narcolepsy may have higher amounts of histamine (which is wake promoting), and the author of the study hypothesized that it was compensatory response. Like you said, there are probably other changes in the brain too, to try and compensate for the loss of hypocretin, that end up causing other problems for us.



#12 NetiNeti

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Posted 10 July 2013 - 12:17 PM

I'm having a really bad day today. I am currently at work and all I want to do is sleep.

 

Maybe I will takr a nap under my desk. Just came here becauseI knew you guys would understand. :)



#13 Hank

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Posted 10 July 2013 - 12:57 PM

I'm having a really bad day today. I am currently at work and all I want to do is sleep.
 
Maybe I will takr a nap under my desk. Just came here becauseI knew you guys would understand. :)


Oh, !@%- I hate that. Resisting sleep is like trying not pass gas in public- both are so socially unacceptable and so hard to hold back (sorry for that).

I think of my naps as a "REM discharge"- like when static electricity builds up and you get zapped. I just need a safe place to let REM discharge.

Sometimes exercise, like situps help while the urge passes.

#14 Ferret

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Posted 10 July 2013 - 02:07 PM

Sitting on the loo with your head propped up against the wall worked for me when I needed to snooze. I woke up every time someone asked if I was OK..."Yeah, I've got really BAD diarrhoea". They left in a hurry...and left me in peace and quiet.



#15 Megssosleepy

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Posted 11 July 2013 - 11:21 AM

Sitting on the loo with your head propped up against the wall worked for me when I needed to snooze. I woke up every time someone asked if I was OK..."Yeah, I've got really BAD diarrhoea". They left in a hurry...and left me in peace and quiet.

 

Haha, this is my place to go... lay my face in my hands and wait for it to pass... A few times I have woken up when someone came in not knowing how long I was out! Thankfully hasn't been more than 10 mins!



#16 Ferret

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Posted 11 July 2013 - 12:51 PM

It's funny isn't it, how those overwhelming urges to sleep result in power naps that only seem to last about 10 to 15 minutes...awaken feeling as if you've had eight hours of sleep. Warning!...Warning!...PWN should always wear watches :)

Have you ever tried to fight it off while writing something? Then look down at what you were working on and find a bunch of hieroglyphic looking cat scratches in the place of normal writing? Too weird!



#17 TiredAgain

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Posted 13 July 2013 - 04:00 PM

I can't even nap well, when I can lay down I don't fall asleep for a long time. I can lay there for 30/40 mins, so I don't even try anymore. I watch TV or go on the computer until I fall asleep and then its only minutes at a time. I get jealous when my sister comes to visit because she can lay down and sleep for a coupe of hours through noise etc..

I toss and turn all night long and I get up at least once. Even when I think I slept through the night I'm still exhausted in the morning. I wake up around around 4:00am, I let my dogs out and then I go back to sleep. Then when my alarm does go off at 6:00 I want to cry because it feels like that was the deepest sleep I got all night.

I'm only on 30mg of Adderall every morning my Dr. did try to add Provigil in the afternoons but it didn't help. I need more because I hate feeling tired all the time. Probably about 50% of my life I am just functioning not living, I work, take care of my son and hangout with friends but half of the time I am just going through the motions.

I try to schedule my life around my down times, before I knew I had N I stopped doing things that I knew would be more then like 2 hours long. I would get tired and nasty and at the time I didn't know the warning signs, so it seemed like I was fine and all at once I would start to get grouchy. Now I know and I have no problem telling people, but I believe more meds my give my more of a life.

#18 sk8aplexy

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Posted 13 July 2013 - 05:32 PM

Ferret, similarities...

"...regular sleep schedules...

Cataplexy is not controlled and I have a limited social life that is only shared with those I let in and can let my guard down with. My" Mother "is a rock for me..."

I'm alone near all the time. =/

TiredAgain, similarities...

"I can't even nap well, when I can lay down I don't fall asleep for a long time. I can lay there for 30/40 mins, so I don't even try anymore." 

I tend to sit at computer till I feel the sleep, or sleep attack has hit.  Naps only work when I stumble over into bed, without thinking.

At night, I'll try to do like 15-30 minutes of stretches and breathing, exercises, before getting into the bed but that doesn't always happen or for long.

"I toss and turn all night long and I get up at least once."  Such can be really frustrating, it is so much worse when it is hot, I sleep much better in cold temps.

I tend to be awake early in the mornings a few times at least, I'll lay there going in and out of whatever dream/s.

In the mornings first thing after I get out of bed, is a shower, then a cup of water on my walk to get my Decaf coffee (headaches were coming back too often from 1 or 2, 12-16oz normal coffees a day, so for the last few months I've been steadily drinking Decaf, 2 or sometimes a 3rd, 16oz cups).  It can be within a couple of hours after awakening before 10am, when I get my first sleep attack, mid afternoon or more common early evening (4-6pm).  

At times I resist taking a nap, but more often these days I just budge and sleep 1.5-3 hours.  It's like having 2 or 3 days, in each day, often (minus sun up and down/s)...

I take nothing besides Vitamin D with the water, first thing in the morning.  I'll make a straight fruit smoothie usually mid day or anytime I want a bit more energy, like if I'm gonna go do anything (especially skate or hike); I use a lot of grapes (they work well as the liquid) with a dab of water, then add whatever banana, apple, watermelon, melon, other whatever frozen fruit I've got like perhaps frozen strawberries, berries, mangos, peaches... 

At some point down the road, I'll possibly try a stimulant again, but the heart effect it has on me is not one I enjoy.

I know that when I was younger, I pushed myself so hard, always through and keeping my head up.  Yet, I was unaware of how obvious it was that my head was drooping, my demeanor was tired/lazy/unenthusiastic.  Now, I can only be enthusiastic when I know, it is something manageable or within reach; I do not push myself like before, others are always seemingly pushing and not only themselves, that is more than enough (too much) to deal with.

I do manage, it's rough yet also mellow.  Day to day, month to month, year to year, varying unknowns with random ups and downs, consistency is rare yet slightly graspable.

I'm very thankful but also totally aware of how in ways it's like living on a plank, which is near or above the cliff.

My Skateboarding, Cataplexy with Narcolepsy lifestyle, is simply put: messy and mixed up, yet innocent and harmless..!..



#19 TiredAgain

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Posted 14 July 2013 - 01:21 AM

Sk8aplexy I realize how lucky I am not to have cataplexy and I have to say I admire people that do have it and carry on with things like skateboarding. I also take vitamin D and a B complex.

I have been getting headaches for years and migraines but I never associated it with N. I have allergy ones, hormone ones etc.. About 6mths ago I started paying attention to them again and realized half the time I get them it's when I wake up or after a so called nap. Years ago I did a headache journal for a Dr and I had a headache 17 out of 18 days. Headaches also make me feel like I'm functioning but not living. I know how to help my allergy and hormone headaches but how do I prevent my bad sleep ones??

#20 sk8aplexy

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Posted 14 July 2013 - 04:50 AM

Thanks TiredAgain!  I like to say, because I know it's a fact (for me) that 'Skateboarding could not have prepared me better for, and/or helped me adjust along with/to, Cataplexy.'

Skateboarding has taught me so much that is, valuable and grounded, important and essential; just in the sense of awareness and constant chance of possibilities (hitting a rock, slipping off edge, bad footing, center of balance, trial and error but practice and basics are essential, etc.. -as a few examples-), Cataplexy relates somehow.

 

It seems for me the headaches have over time definitely changed in various ways, but in childhood and teens they were fierce with vomiting and being entirely debilitated, at least one fierce one a week but not a lot of mellower ones. 

In my late teens and most of 20's it had changed into a more constant/continual, lighter but intrusive and also at times debilitating, fierce with vomiting, it seemed to be 4 or 5 days a week I'd be quite miserable.

Since a few years back, when I really began changing up what I eat and especially since when I realized I was allergic to so much (especially pollens and grasses -nature), they lessened in the amount of how often, had gone down to 2 or 3 days a week perhaps. 

Now, I'm thankful, because at 33 after major diet changes around a year and a half ago, I get one every week probably and not so fierce, yet I do still get the fierce ones but they seem to relate to activity and/or stress levels, but also very much my neck (I can only skate/hike/play hockey or whatever, for short periods and if I ride my bike or row in a boat I'm guaranteed a headache there after). 

Sleep comfort and temperature are huge in relation to waking up with a headache or even sleeping so I have to be extra snobby about both, travels can be difficult for even a few nights if I don't come prepared with proper mattress thingy and pillow (which I can only handle a couple of weeks if lucky).

Ice and stretches.  Arms up, chin up, 10 seconds, arms to toes, 10 seconds, extend arms outwards and squeeze shoulder blades, 10 times slowly [always breathing and counting, focusing on body], etc. -there's a lot of basic exercises like that, squeezing the shoulder blades and slightly reaching or moving arms backwards (-->  ||, T, Y, ^, || <--); daily have helped, or help at onset, tremendously!