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Inability To Wake Up & Narcolepsy? I'm Desperate For Help...


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#1 Anita

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Posted 21 September 2013 - 10:43 PM

Hi all,

I'm new here and hoping someone can help me... All my life I've had sleep issues one doctor said was hypersomnia & delayed sleep phase syndrome, and one said narcolepsy. My main problem is that I just cannot wake up in the morning, despite 7 to 12 hours of sleep! The alarms I have always seem to be interrupting dreams and I usually vaguely remember turning them off (or just not hearing them at all for hours) and just collapsing back into bed and the dream. I've lost jobs over this. I did have problems being extremely sleepy during the day ever since I can remember until I took the right combo of activating meds a number of years ago. I cannot get to sleep at all without Xanax -- it's the only drug that makes me sleep and not worsen the difficulty waking up. I did have a night and day sleep test but since I take medications, the only thing that showed up was that I lacked deep sleep, and I was so anxious during the whole thing I couldn't nap twice during the test, but I spend literally almost every Saturday sleeping the whole day away. 

I've tried every sleep med and stimulant there is out there over the past many years, and nothing works. My only hope is Xyrem, which my doctor agrees with, but she says I'm ineligible. (What does that mean exactly?) I'm having another sleep test next week.

But what is this inability to wake up? Has anyone here had serious problems with this, and if so, what meds help? Any insight would be so welcomed! 

A



#2 IdiopathicHypersomniac

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Posted 22 September 2013 - 12:01 AM

It sounds like you may have a rare form of GABA-potentiated hypersomnolence.  Google flumazenil and hypersomnia.  Biaxin has helped some people like you.



#3 Potato

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Posted 22 September 2013 - 01:29 AM

If possible you should take a week, or maybe think back to a time you had no obligations/alarms to interrupt your sleep cycles, and get an idea of what your natural sleep cycle is without any alarms or obligations to wake up. It's important to know how long you naturally sleep and how your sleep-wake cycle progresses.

 

In any event, if you're getting 7-12 hours of sleep and you're still having difficulty waking up, that's not simply delayed sleep phase disorder. If it was only that, you would go to bed some hours later than most people, yes, but after a normal duration of sleep (7-9 hours) you would wake up feeling rested. It sounds like that's not happening and even on nights when you can sleep as much as you want to you're still having issues with fatigue.

 

As far as failing to meet obligations in the morning due to your sleepiness, you may have to set up multiple alarm clocks. I have also ran into trouble with shutting off alarms in my sleep. What you need to do is have one alarm near your bedside and a second alarm far across the room which is really obnoxiously loud. Set the one far away from you to alarm five minutes after the one at your bedside. That way either you wake up to your bedside alarm or are punished by the second alarm and forced to go all the way across the room to shut it off. By that point you're conscious enough to at least make it to the shower and get your day started.

 

Finally, in regards to the insomnia, you should make sure you're taking appropriate measures to maximize your natural urge to sleep at night. That means at least 2 hours before your bedtime the lights should be as dim as possible, you should avoid computer screens/television screens if possible, try to do relaxing activities rather than strenuous/exciting ones, and so on. These types of tips are plastered all over the internet so I won't provide an exhaustive list. Melatonin supplements can and will help if you take them approximately an hour before bedtime. Instant release forms will not make you any more fatigued in the morning so you might give those a try.

 

Good luck.



#4 b.chrissie@yahoo.com

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Posted 22 September 2013 - 08:37 AM

Hi all,

I'm new here and hoping someone can help me... All my life I've had sleep issues one doctor said was hypersomnia & delayed sleep phase syndrome, and one said narcolepsy. My main problem is that I just cannot wake up in the morning, despite 7 to 12 hours of sleep! The alarms I have always seem to be interrupting dreams and I usually vaguely remember turning them off (or just not hearing them at all for hours) and just collapsing back into bed and the dream. I've lost jobs over this. I did have problems being extremely sleepy during the day ever since I can remember until I took the right combo of activating meds a number of years ago. I cannot get to sleep at all without Xanax -- it's the only drug that makes me sleep and not worsen the difficulty waking up. I did have a night and day sleep test but since I take medications, the only thing that showed up was that I lacked deep sleep, and I was so anxious during the whole thing I couldn't nap twice during the test, but I spend literally almost every Saturday sleeping the whole day away. 

I've tried every sleep med and stimulant there is out there over the past many years, and nothing works. My only hope is Xyrem, which my doctor agrees with, but she says I'm ineligible. (What does that mean exactly?) I'm having another sleep test next week.

But what is this inability to wake up? Has anyone here had serious problems with this, and if so, what meds help? Any insight would be so welcomed! 

A

A - I am really glad you posted this. I have had both issues, the inability to wake up and constant eds, exactly as yo uhave described. I was finally diagnosed with narolepsy but am still on the hunt to find the right fix. The meds I have taken so far (nuvigil and concerta) have had zero effect on the ability to wake up.

 

PLEASE stay in touch, and I will do the same. I haven't talked to anyone who has described my experiences as closely as you have so hopefully we can help fix it. Thank you for your post, it really is nice to know I am not alone sometimes. Nobody seems to get what I am going throuhg in my family/friends. It's always like they are thinking "oh bummer, you're sleepy. Join the crowd." or "you can get up, you just don't." I am so tired of being tired.

 

Thanks A!



#5 Anita

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Posted 22 September 2013 - 03:40 PM

It sounds like you may have a rare form of GABA-potentiated hypersomnolence.  Google flumazenil and hypersomnia.  Biaxin has helped some people like you.

Wow, I had no idea about this. Thank you! I always thought the reason Xanax worked for me was because its half-life is so short, so once the level got down to a certain point it would wake me up. My doctor would probably let me try Biaxin, but how would that work with the Xanax? I can't get to sleep without the Xanax (and I take a lot). Thanks so much for mentioning this.

A



#6 Anita

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Posted 22 September 2013 - 03:46 PM

If possible you should take a week, or maybe think back to a time you had no obligations/alarms to interrupt your sleep cycles, and get an idea of what your natural sleep cycle is without any alarms or obligations to wake up. It's important to know how long you naturally sleep and how your sleep-wake cycle progresses.

 

In any event, if you're getting 7-12 hours of sleep and you're still having difficulty waking up, that's not simply delayed sleep phase disorder. If it was only that, you would go to bed some hours later than most people, yes, but after a normal duration of sleep (7-9 hours) you would wake up feeling rested. It sounds like that's not happening and even on nights when you can sleep as much as you want to you're still having issues with fatigue.

 

As far as failing to meet obligations in the morning due to your sleepiness, you may have to set up multiple alarm clocks. I have also ran into trouble with shutting off alarms in my sleep. What you need to do is have one alarm near your bedside and a second alarm far across the room which is really obnoxiously loud. Set the one far away from you to alarm five minutes after the one at your bedside. That way either you wake up to your bedside alarm or are punished by the second alarm and forced to go all the way across the room to shut it off. By that point you're conscious enough to at least make it to the shower and get your day started.

 

Finally, in regards to the insomnia, you should make sure you're taking appropriate measures to maximize your natural urge to sleep at night. That means at least 2 hours before your bedtime the lights should be as dim as possible, you should avoid computer screens/television screens if possible, try to do relaxing activities rather than strenuous/exciting ones, and so on. These types of tips are plastered all over the internet so I won't provide an exhaustive list. Melatonin supplements can and will help if you take them approximately an hour before bedtime. Instant release forms will not make you any more fatigued in the morning so you might give those a try.

 

Good luck.

Thanks for your advice. I have unfortunately tried everything you've mentioned -- I had an alarm clock that was so obnoxious my neighbor complained because I would sleep through it for hours! I'm not able to reset my internal clock due to work demands -- I would like to try that at some point. Thank you for writing back!



#7 Anita

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Posted 22 September 2013 - 03:56 PM

A - I am really glad you posted this. I have had both issues, the inability to wake up and constant eds, exactly as yo uhave described. I was finally diagnosed with narolepsy but am still on the hunt to find the right fix. The meds I have taken so far (nuvigil and concerta) have had zero effect on the ability to wake up.

 

PLEASE stay in touch, and I will do the same. I haven't talked to anyone who has described my experiences as closely as you have so hopefully we can help fix it. Thank you for your post, it really is nice to know I am not alone sometimes. Nobody seems to get what I am going throuhg in my family/friends. It's always like they are thinking "oh bummer, you're sleepy. Join the crowd." or "you can get up, you just don't." I am so tired of being tired.

 

Thanks A!

Glad (well, glad is not the right word, haha) to find someone else with this problem. How do you manage? I used to have depression and assumed it was part of that, but once the depression abated, I still didn't wake up. The diagnosis of narcolepsy was a huge relief, because I always blamed myself, and that's a crappy way to go through life. I found that a small dose of Abilify (5 mg) helps keep me awake during the day -- that's the most helpful drug I take. Yes, let's continue to communicate; perhaps one of us with find a cure...

A



#8 IdiopathicHypersomniac

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Posted 22 September 2013 - 04:27 PM

You're welcome Anita.  Biaxin is just an antibiotic.  It may not help you, but it won't hurt, so it doesn't hurt to try.  Flumazenil is hard to get though.  They can inject you with some by IV and see if that wakes you up.  Emory may be able to help you also.  They did an LP on a woman like you and found that she had a strange substance in her CSF that acted like a sedative.  IH is a lot more common than people think.  Oddly enough, I don't have IH, but I learned a lot about it before I was correctly diagnosed with narcolepsy.  You may find that sublingual Ativan is better than Xanax.  Good luck and all the best.



#9 b.chrissie@yahoo.com

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Posted 22 September 2013 - 06:39 PM

A- I have blamed myself for as long as I can remember. Even with the N diagnosis I still do sometimes. It is a constant battle in my head. My doctor said that a lot my depression/anxiety likely stems from the N so he wants to get that squared away first. It tears my apart always sleeping and getting little done as a result. I am calling the doc tomorrow to see what's next. Glad to have found you, however unfortunate the circumstances may be.



#10 SleepySiren

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Posted 23 September 2013 - 09:34 AM

I was DXd last year with N & still question the docs to this day. With that being said I was put on Modafanil 400 ml a day & I drink a drink called Zipp Fizz at least once mostly twice a day that is high in C, B-12, Potassium, Magnesium and a slew of others(this I had done prior to the DX for about 2 years but was drinking 3-4 plus tons of coffee) I also take restoril at night to go to sleep, however still wake frequently but  have not missed one day of work since from calling in sick from being too tired to get up and get motivated.  Don't get me wrong I have had a couple to a few times where I was woken up after I was supposed to be at work or just in time to rush out the door, but for the most part I am able to get up where I wasn't before.  I remember as a teenager being woken by my mother just to fall asleep again, I would dream about my closet and the clothes I knew were in there in order to plan my outfit for the day and be able to throw something on to run out the door.  Hopefully you are able to work with you Dr & find the right mix that helps you, and I wouldn't worry too much about the DX, as long as you are able to get relief and feel better  :)



#11 Megssosleepy

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Posted 23 September 2013 - 02:47 PM

A- The reason you are not eligible for Xyrem is most likely due to the fact that you don't have an N Dx. 

 

I am surprised you were allowed to do the sleep studies while on Xanax, Xanax suppresses REM and would make it almost impossible to get a Dx.  Has your doc suggest slowly getting off Xanax?   



#12 doinmdirndest

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Posted 24 September 2013 - 06:21 AM

try setting the alarm 1 hour early, have whatever stimulant med you are rx'ed on your nightstand, take it reset the alarm for 1 hour later and go back to sleep. works for me.

#13 Megssosleepy

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Posted 24 September 2013 - 03:10 PM

try setting the alarm 1 hour early, have whatever stimulant med you are rx'ed on your nightstand, take it reset the alarm for 1 hour later and go back to sleep. works for me.

 

I do this as well... or I just keep hitting snooze until it kicks in! 



#14 ironhands

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Posted 24 September 2013 - 03:16 PM

I already do this, without stims, and then still end up standing like a zombie in the shower for 20 minutes.  Still no call back from my sleep clinic :(



#15 drago

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Posted 02 October 2013 - 01:40 AM

But what is this inability to wake up? Has anyone here had serious problems with this, and if so, what meds help? Any insight would be so welcomed! 
 

 

Hey Anita:

You've just described one of the worst symptoms I have to a T.

 

I do put medication on my bedside to be taken as soon as I can, but before i do that, I need to actually wake up first, right?

 

I often turn off my alarms (even the ones you need to solve puzzles to turn off) and even speak to people while not really being awake. (Several times people assumed I was awake because I was lucid in response, but I don't remember it at all. I guess I was still asleep.)

 

So, the first thing is: don't rely on sound. Try other kinds of alarms.

 

LIGHT ALARM CLOCKS

Use halogen (or similar) lighting. Usually they rise gradually, like a east-facing window catches the sunrise,  but set to a timer.

 

AROMATHERAPY ALARM CLOCKS

Use scent/essential oils. Allows you to set a time when the scent begins. Most allow you to mix/match scents, so whatever works for you can be used. (i.e. citrus or rosemary or whatnot)

 

ALARM CLOCKS FOR PEOPLE WITH DEAFNESS

Use either sonic boom elements or 'shakers.' I use the shaker, which you can put under a pillow or the mattress. The shaker will vibrate on alarm.

 

I find that I have to change the scent from time to time, but the general progression that I follow is the first alarm that starts is the scent alarm. Then I have a sound alarm (my cell phone, basically). Thirty minutes later, another sound alarm. Fifteen minutes after that, the shaker alarm. A third sound alarm. I usually time my light alarm for about twenty minutes after that. Obviously, this creates some overlap. The scent alarm goes for about thirty minutes. The light alarm usually takes about 45 minutes to "rise" to full light power.

 

Anyway, this is how I manage to get up -- a combination of alarms that I can switch up as needed.

 

drago



#16 phreadriquebean

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Posted 15 October 2013 - 02:18 AM

I have this same problem.  I could often sleep through my alarms for hours.  Now my bf is pretty good about waking me, but there are days even he can't get me up.  He says I yell all sorts of things at him and talk to him but I have no memory of it.  I tried the alarm clocks across the room, multiple, puzzle alarms, etc. and still couldn't reliably wake up for work on time. I'm not working now so it's not as problematic but now it's hard for me to keep a consistent sleep schedule.



#17 Asksuzan

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Posted 05 November 2013 - 01:34 AM

I have the same problem. I have to be at work at 7 am. I seem to do better with 4 hours of sleep the more i sleep the more my body needs sleep.

My routine
4 am my happy light turns on with a timer.
http://www.verilux.c...CFYRDMgodwjwAtA

4:30 take Provigil (generic) phone alarm.
4:50 sunrise alarm snooze
5:15 snooze
5:30 snooze
5:45 20 mg rittalin
6:00 wife makes dog lick face, I hide under covers
6:10 wife is making me take a drink of fluids
6:30 wife is screaming at me "help me I'm hurt" I jump up startled run into wall or trip and fall (not sure if it is catalepsy yet)
6:45 trying to get dressed realize no time for shower. Chug a 5 he energy drink. Do the (phone, wallet, keys, and glasses dance)

Cuss fuss take ice cube and put it on my neck and get in car. If awake I drive if not I fall back to sleep in car.

Wife wakes me in driveway and takes me to work II'm a zombie until 10 am. Taker my after noon meds at 1pm (200 mg provigil generic) take my nap (lunch break) my staff wakes me up Typically with banging on car window. Then back to building to play with dogs.

#18 Hank

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Posted 05 November 2013 - 11:21 PM

I have the same problem. I have to be at work at 7 am. I seem to do better with 4 hours of sleep the more i sleep the more my body needs sleep.

My routine
4 am my happy light turns on with a timer.
http://www.verilux.c...CFYRDMgodwjwAtA

4:30 take Provigil (generic) phone alarm.
4:50 sunrise alarm snooze
5:15 snooze
5:30 snooze
5:45 20 mg rittalin
6:00 wife makes dog lick face, I hide under covers
6:10 wife is making me take a drink of fluids
6:30 wife is screaming at me "help me I'm hurt" I jump up startled run into wall or trip and fall (not sure if it is catalepsy yet)
6:45 trying to get dressed realize no time for shower. Chug a 5 he energy drink. Do the (phone, wallet, keys, and glasses dance)

Cuss fuss take ice cube and put it on my neck and get in car. If awake I drive if not I fall back to sleep in car.

Wife wakes me in driveway and takes me to work II'm a zombie until 10 am. Taker my after noon meds at 1pm (200 mg provigil generic) take my nap (lunch break) my staff wakes me up Typically with banging on car window. Then back to building to play with dogs.

Sorry to tell  you- 4 hrs of sleep is a really bad idea. That is waaaay to little for even a person who sleeps normally. You absolutely need more. If you have trouble sleeping at night (common for PWN) there are safe and non addictive options, like sedating antidepressants. You are doing yourself real harm by not taking care of yourself.



#19 Gemma

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Posted 06 November 2013 - 01:19 PM

If Anita's like me - and she sounds exactly like me - methods of forcing herself awake will not be effective in the long-term. I find it nearly impossible to get up before 11:00 am, regardless of what time I go to bed. I might be able to force myself to get up at a "normal" time for some important event, but it's not sustainable. After two or three days of forcing myself up at 8:00 am, I'll be hallucinating spiders, jumping/screaming at slight noises or movements, feeling like throwing up constantly, feeling weepy, getting huge memory lapses, and pretty much every indicator of extreme sleep deprivation that is characteristic of me - even if I had 8 hours of sleep each night. 

 

I'm not sure if I have hypersomnia, narcolepsy, or some other sleep disorder (just a pathological need for more sleep than the average person). I had an MSLT about 10 years ago that my current sleep doc told me was definitely narcoleptic, but wasn't diagnosed as such at the time because I didn't go into REM sleep at all. However, this was most likely due to the fact that I was taking anti-depressants at the time (which suppress REM sleep). The person who'd analysed the results 10 years ago didn't know that I shouldn't have been on anti-depressants for an MSLT. Anyway, fast-forward to the present, and I have even worse sleep issues than at that time, but I can't do the MSLT because I'm on a lot of drugs that would impact the result and there's no way I can go off them without quitting my job and living a very crappy life (probably house-bound) while tapering off. I did an overnight sleep study recently, but I've been having a lot of problems with night-time insomnia in the last several months, and I only managed to sleep about 6 hours, though I had taken a drug to make me sleep. The sleep doctor said my sleep was short, but what there was of it was completely normal apart from the complete lack of REM sleep (but I'm on more than one drug that suppresses REM sleep). 

 

Besides the extreme sleepiness, I get occasional hypnopompic hallucinations, have severe memory problems (people tell me I've asked the same question three times in the last few minutes, but I have no memory of it; I deposit things in weird locations multiple times a day and then can't find them; I'll take something out of the fridge, put it on the counter, and then go straight back to the fridge and search industriously for it for the next 10 minutes before finding I must have put it on the counter (but have no memory of doing so); I often stop while walking and can't remember what I was doing or where I'm going...etc.), and get something which feels like sleep paralysis when I'm trying to wake up, but I'm not sure if that's what it is (I'll be dreaming with my eyes shut, but I'm awake and really want to get up, but I can't move anything. I might feel that my arm has gone completely numb and want to wake up so I can make sure I haven't permanently destroyed my circulation, but I can't move a muscle, and the dreams keep furiously trying to keep me down. However, it doesn't sound like what I've read about sleep paralysis, in which it seems the person is totally awake - no dreaming - and experiences the paralysis as frightening. Mine didn't feel frightening, it was just annoying. I felt like I had to literally fight the dreams down before they'd let me wake up). 

 

I'm on modafinil now, and it seems to do a pretty good job stopping me napping during the day (as long as I can wake up long enough to take it), but I definitely feel like I'm building a massive sleep debt during the week because I'm not getting in the extra sleep I would normally have during the day. I normally end up having to take a whole day off work per week just to sleep all day to make up for it. Which makes me wonder if I simply have a biologically-programmed need to sleep for a much longer time than most people. With 8 hours sleep, I'm a wreck. 10 hours is doable but not pleasant. 12 hours feels better. 15 feels best of all. 

 

But there is no room in our society for someone who sleeps 15 hours per day. I think I'm pretty much screwed.