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Permalink Reply by Mike on February 11, 2009 at 3:48pm

This is an amazing story, and thank you for having the courage to speak up about it. I'm sure this happens everyday to thousands of people, but it's rare to have someone talk about it.

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Permalink Reply by Kim Walters on February 11, 2009 at 8:56pm

I used to be sleepy all the time, and had a hard time functioning. I have not responded well to my CPAP, and actually flat out refuse to use it. I have found that Excedrin around 10 in the morning will give me enough of a boost to get me through the day, and into the evening. I'm sure it is not the perfect solution, but it works for me. I can work, drive, and run my house.

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Permalink Reply by Gerald Allen on February 12, 2009 at 12:59am

Thank you Kim, Hope you used the CPAP. I didn't know I was sleepy. I was working to hard that day to get home early.

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Permalink Reply by Michael Smith on February 13, 2009 at 10:13am

Thanks for sharing. I had similar experiences..I got so bad I could not drive over 30 minutes without having to pull over and take a cat nap. My Apnea got worse over time. I ended up getting a sleep study done and eventually was diagnosed with Central and Blockage Sleep Apnea. I was prescribed a CPAP system, been using it since 2002. ..The first time I used the CPAP (during the sleep study) was the most refreshed I had felt in a long time..CPAP is a pain but it works for me. It's better than the alternative.

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Permalink Reply by Melodie on February 14, 2009 at 2:19am

Jerry,
Hi, this is Melodie (Mel). I have had this same experience, and I was also falling asleep in meetings at work, watching television, emailing people - until my doctors finally diagnosed me with Narcolepsy! So, I have narcolepsy along with my obstructive central sleep apnea, systemic lupus, empyhsema, COPD, and many, many other major health issues.

The narcolepsy is very scary and also dangerous. My doctors have put me on a drug for narcolepsy called "Provigil", but the only problem with that is whenever I take a whole tablet (200mg) in the morning, I cannot sleep for a day or two! So now, I am supposed to only take the Provigil when I know I have to drive somewhere, and only take half a tablet (which is still 100mg) and that still keeps me awake all night for at least the night that I took it in the morning. I am up now at after 2:00am (EST) because I had to take a Provigil on Friday morning, as I had a doctor's appointment, and am now paying the price of having to take that medication - I cannot sleep tonight!

To try and remedy the loss of sleep due to the Provigil, my psychiatrist has put me on 600mg of Seroquel at night to sleep. Let me just tell you, when the Seroquel starts to hit you, you'd better be getting in the bed quickly or you will sleep wherever you are - it has happened to me. The main problem with that is you are NOT getting the therapy of your C-PAP or in my case the Bi-PAP Auto SV and oxygen........

Narcolepsy, along with sleep apnea, is very scary, dangerous and should be taken seriously. Have you been diagnosed with Narcolepsy? Or what is your physician attributing your falling asleep in the car to? Just thought I should throw out the Narcolepsy information in case you feel you need to get checked out for this. I never dreamed I could have narcolepsy along with sleep apnea.....pretty strange. But the good thing is that it too can be treated.

Hope I have been helpful or informative in some way. If you do get diagnosed with Narcolepsy, and they give you "Provigil" to take, keep in mind that it CAN affect your sleep at night and you may also need a sleep medication also.

Let us know how things are going for you!
Mel

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Permalink Reply by Gerald Allen on February 16, 2009 at 6:16pm

Melodie, what great name. Sorry I didn't get back to you sooner. I was at the ER and then stade at the Hospital tell the 15th.
Worked on my yard all day today. OK, I had alot of pain in my left side and my Heart was not doing good. And now I've got Diebetus. Spelling check not working here. Ha Ha.
Yes. I herd of Narcolepsy don't know anything about it. I know I need to be checked out too. Last night I set here in this chair and fell asleep. Woke up at 2:54am. Then lade down and put my C-pap on an got up at 7am. Hope you are doing fine.
Thank you for your input. I don't sleep much at night. But there is times that I chash for hours. I know it is bad for me but like some write only I can help myself. Hope to here from you friend. G

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Permalink Reply by Melodie on February 16, 2009 at 8:18pm

Jerry,
I can truly relate to falling asleep at all different hours, times, and places. That narcolepsy does a real number on me and I just hate it! Plus I hate taking the Provigil medication for it, like I said - it keeps me from being able to sleep even with sleep medication!!!!!!!!!!!!!!!!!

I stayed awake all night Friday night, and finally went to bed on Saturday morning around 11am, slept until 2:30pm and couldn't go back to sleep until Saturday night - but at least I got to bed early that night and slept a full 8-9 hours without waking until the water chamber in my heated humidifier was running dry. I always wake up whenever the water chamber runs dry because I get all dried out and can't seem to get something to drink fast enough, and of course use nose spray to moisten the nostrils.........LOLOL. It's a vicious cycle, but you eventually learn little things to help you through it all.

Now I am sick, with what I think may be a flu bug, slept off and on all day Sunday, so I took all 600mg of my sleep medication Sunday night and have been too sleepy all day today. But it will eventually all work out. Tonight I will only take 400mg of the Seroquel and that is the right dosage for me to sleep just enough with my Bi-PAP.

How long have you been having problems with the daytime sleepiness? And falling asleep at the wheel of the car? You really should get that checked out, you could get killed or something.............don't mean to sound morbid, but we want you to be here for a long time my friend!!!!!!!!!!!!!!!! Just mention it to your physician and don't leave anything out. They may determine that you either have narcolepsy or another kind of sleep disorder along with the sleep apnea - just like they did with me. It's still kinda freaky about the narcolepsy though - I used to think that was something that just happened to "other people" or was just an old wives tale - boy was I wrong!!!!!!!!!!!!!

Let me know if there is anything I can do to help you with the daytime and car sleepiness. Glad to help anyone out there - especially all our friends here on sleepguide!!!!!!!!!! We do have a great bunch of people here and it seems if one of us misses something, another person will catch it and point it out. That's the beauty of a group like this! We are glad you are here. And I'm glad you shared your story, I thought I was was pretty much alone with this narcolepsy stuff.

Write me anytime,
Melodie (Mel)

Jerry Allen said:

Melodie, what great name. Sorry I didn't get back to you sooner. I was at the ER and then stade at the Hospital tell the 15th.
Worked on my yard all day today. OK, I had alot of pain in my left side and my Heart was not doing good. And now I've got Diebetus. Spelling check not working here. Ha Ha.
Yes. I herd of Narcolepsy don't know anything about it. I know I need to be checked out too. Last night I set here in this chair and fell asleep. Woke up at 2:54am. Then lade down and put my C-pap on an got up at 7am. Hope you are doing fine.
Thank you for your input. I don't sleep much at night. But there is times that I chash for hours. I know it is bad for me but like some write only I can help myself. Hope to here from you friend. G

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Permalink Reply by sleepycarol on February 16, 2009 at 9:45pm

Jerry,

Hope you get to feeling better!!

Do not over exert yourself if you have heart problems. Be sure and keep tabs with your physician so he knows how you are doing.

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Permalink Reply by Melodie on February 16, 2009 at 10:17pm

sleepycarol said:

Jerry,

Hope you get to feeling better!!

Do not over exert yourself if you have heart problems. Be sure and keep tabs with your physician so he knows how you are doing.

Dear Jerry,
I don't have any heart problems, they ruled that out last year with a huge battery of all kinds of tests and stuff when they found that I have emphysema. That's when I got put on oxygen, and then later they found the central sleep apnea - but first was on a C-PAP and when it didn't help like the doc expected, he did another sleep study and then put me on the Bi-PAP Auto SV with an oxygen bleed of 4 liters per minute (nocturnal).

When I DO get to sleep in the bed and use my Bi-PAP, I sleep just fine. My problem is getting to the bed before the sleep meds fully take effect.......lolol. I have awakened in my desk chair at the computer on many nights, just to realize it was already morning.......So, now I try to get to the bed within 20-30 minutes after taking my night meds. If I do that, then everything is fine - until I have to take the narcolepsy medication again...........a never ending saga.........but I'm learning to adjust and try to get things straightened out.

Hope you are doing good tonight my friend,
Melodie (Mel)

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Permalink Reply by Gerald Allen on February 17, 2009 at 1:16am

Hi Guys, well I'm in a rut. Day time sleep not bad yet. I make sure someone is with me when I'm driving. Now the oyg. is another thing. Its that 90% it keep droping to. I might be on oyg. one of these day. And this diet at 1800co. by ADA. is going to be work. Good nite guys. G

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Permalink Reply by Melodie on February 17, 2009 at 1:46am

Jerry Allen said:

Hi Guys, well I'm in a rut. Day time sleep not bad yet. I make sure someone is with me when I'm driving. Now the oyg. is another thing. Its that 90% it keep droping to. I might be on oyg. one of these day. And this diet at 1800co. by ADA. is going to be work. Good nite guys. G

Jerry,
There are lots of things that are worse than being on oxygen. At least you are pretty healthy Jerry! The ADA diet isn't so bad, get a recipe book from Splenda and it is safe for diabetics. Splenda used to be one of my biggest clients when I was still living in Atlanta. I love their product and you can cook and bake with it too. Count your blessings, and remember it could ALWAYS be alot worse!!!!!!! I have to remember that every single day - and it does help! Hope you get some sleep tonight. I am heading off to bed now...........ZZZZZZZZZZZZZzzzzzzzzzzzzzzzz.
Melodie

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