I know about and have the usual fatigue and sleepy times, but not long after I get up, and even later too, I am experiencing sudden attacks of my forehead feeling tight with a dull ache, and my eyes start getting so tired the eyelids start drooping, and I feel like I can't stay awake no matter what.
I know in my heart it is not a true kind of being sleepy, but something else. If I am hear reading and it happens I will find that I fell asleep for a brief time. I use a cpap at night. Could my lupus have something to do with this?
Have any of you had this to happen? I have experienced this for a couple of years now, but it was very far in between before, and then closer between attacks of it, but now it is everyday, and sometimes a couple of times a day, and ruins the whole day.
Thanks for any info or comments.
susanep
I just saw my sleep doctor on Monday. In addition to the CPAP machine he has me on Provigil (Nuvigil would be nicer, by is nixed by the insurance I have.). I have been sitting watching the evening news, and falling asleep during the news, when I really want to watch it. In my sleep study I got a dx of hypersomnia, the next thing to narcolepsy.
What I experience is falling asleep watching tv, without understanding that I am drowsy, first. While a person with narcolepsy may fall asleep in the middle of a conversation, or while driving, hypersomnia is not *quite* so alarming, but certainly interrupts the normal flow of awakeness and sleepiness. Some people call this "fatigue," but to me is a very different thing, and something that's treatable.
On Monday the doctor increased my dose of Provigil, and now I just fall asleep for two or three minutes at a time, instead of two hours! The trouble with sleeping for two hours is that it's sleep that takes away from my time on the CPAP machine. That time on the CPAP machine heals and prevents brain damage, and I crave it!
So drowsiness that takes over my plans is really a problem, and for me at least has very little to do with a tired body or mind, only with a flickering screen and sitting quietly.
Best,
Soycoffee
I do get that crashing fatigue and I have to take a nap. It may be as simple as close my eyes for two minutes or it may take hours before I snap out of it. It can happen any time of the day.
But Joe, do you make it to your bed, do you manage to take your glasses off before you fall asleep, do you mark your place in your book -- those are things a fatigued person would do. Those are all things I can't do before I fall asleep. Those are things someone with narcolepsy or hypersomnia can't do before falling asleep.
Is the best treatment a nap, or a medicine? That is the question.
Best,
Soycoffee
Soy,
There are times I can not move from my recliner or remove my glasses. There are other times I can get my glasses of and move to the davenport 3 feet away. I do not believe I have narcolepsy or hypersomnia.
My nodding off is more related to my pain level being so intense that I can not remain conscious. I will often have a fit of muscle spasms as a warning sign. If I take codeine soon enough I can stop the blackout/sleep episode. I do not like taking codeine as it makes me constipated and the MD's will not Rx it, so I experience the episode.
Susan,
I get EXACTLY what you're describing...without the dull headache. It is a profound type of fatigue that is somewhat sudden. I feel like I have to keep moving, even if it's fidgeting in the chair, just to keep from falling asleep.
I always attributed this to like a flare, since it doesn't happen all the time...just in waves for days or weeks.
Joe,
You truly are unique. I have never known anyone that can fall asleep in severe pain (or even pass out from it). Usually people I read about or talk to cannot sleep because the pain is so severe. I thought you used the tones, reiki etc. I didn't realize you had that much pain. You should talk to a different doctor(s) (until you find one) about rx'ing pain meds for these severe times. You should NOT have to be in that much pain.
I experiance differnt kinds of fatigue/exhaustion. But to answer your question. no, i do not get that drowsy yet. I get really tired. Really drowsy at times. But I am able to go to bed, or get on the couch.I dont work so that is a blessing to me. I am able to wake up if my son needs me. lately I am starting to worry about driving. Driving is a problem when Im like this. And I have to pick my son up from school. I do have some friends who can do it for me. So I am going to take them up on their offer and let them pick him up when this hits me.
Luna
Gosh, this sounds terrible! And scary!
As I've said before, I'm no medical person --- but it almost sounds like you're having some kind of seizure activity or maybe even narcolepsy.
I think you need to get it checked out.
It has crossed my mind that I wonder if this could be some kind of light seizure. I will have to do some research on that.
susanep :)
Quote from: Joe S. on February 10, 2012, 02:22:29 AM
Soy,
There are times I can not move from my recliner or remove my glasses. There are other times I can get my glasses of and move to the davenport 3 feet away. I do not believe I have narcolepsy or hypersomnia.
My nodding off is more related to my pain level being so intense that I can not remain conscious. I will often have a fit of muscle spasms as a warning sign. If I take codeine soon enough I can stop the blackout/sleep episode. I do not like taking codeine as it makes me constipated and the MD's will not Rx it, so I experience the episode.
Joe, I understand. I fell asleep almost immediately watching the second part of The Matrix. There it was the high, high decibel level of sound that was painful and knocked me out. I am not aware of being in pain when I fall asleep now, the sound is not too loud, and the doctor thinks it's hypersomnia/narcolepsy.
Sleep is , as you describe it, a paradoxical response to pain.
Take care,
Soycoffee
I think that it is more of a black out that ends with sleep. When I was at the pain clinic so many years ago they said it was my response to intense pain. Suicide is never an option. A mental vacation seems to help.
A blackout! That's it exactly. Thanks, Joe.
Gradations:
Sudden blackout, zonked (Pain, noise)
Overcome by sleep, don't have time to move (I think it might be neurological)
Fatigued at the wrong times of day, can't resist dozing, but make it to a suitable spot(?)
All day fatigue, zombie walking through the day
Out of it, can't pay attention, can't remember stuff, not alert enough to function.
There are probably some gradations that fit within this. Suggestions are welcome.
Soycoffee
I sometimes get the drowsiness where I can feel myself go limp for a split second, and realize I probably just fell asleep, a "microsleep" as I think it's been called.
For me, I don't think it's narcolepsy. I think it's just severe fatigue, even perhaps sleep deprivation. I do well at night, I go right to sleep and then don't wake up until my alarm. I get about 6 hours of sleep on average (but really, I should get more - but with 3 kids and a full time job, I just am not able to).
Susan, Lupus is known to have some psychiatric symptoms and you could be having some seizure activity. I would document when they happen and the feelings you have prior.Also document how long you are asleep.
It is possible to have narcolepsy show up but I have a friend with this and when she falls asleep she will often sleep for a long period of time. Everyone is different though. Good luck. Irish