Jump to content


Photo

Can Anyone Explain What This Means In Plain English?


  • Please log in to reply
38 replies to this topic

#1 eightlegs

eightlegs

    Member

  • Members
  • 126 posts

Posted 26 May 2009 - 12:37 AM

I'm getting frustrated again, and am poking around for more answers. Quick summary I've had two sleep studies (day and night) from two different dr's... first said IH, then narcolepsy, but then I switched dr's after having a bad reaction to Xyrem and getting no support. Second study came back ruling out narcolepsy, with an official diagnosis of "Upper Airway Resistance Syndrome" and "Repetitive Intrusions of Sleep". huh.gif I had 22.6 non-snore related spontaneous arousals an hour that no one can seem to explain... and funky fragmented sleep. I have cataplexy, (but I don't think the dr's believe me) and have tested positive for two of the 3 HLA types. That's what I know. Tried lots of meds... none of them really making much difference, or not for long.

I came across this study tonight.. and I just can't seem to make sense of what it's saying... can anyone translate?

http://cat.inist.fr/...cpsidt=16153023

#2 Irishhh

Irishhh

    Member

  • Members
  • 178 posts
  • Location:Kentucky, Yes, we wear shoes!

Posted 26 May 2009 - 12:59 AM

Maybe we can figure this out together!

I tried so hard to read that, but it overwhelmed me. I don't really know what they are talking about. Microarousal I would think means mini waking. Probably the sort of thing you don't realize you do. Maybe a change from deep to lighter sleep?

and then I think they mean the more sleep deprived people were, the less severe their awakenings were? I'm trying to think of how to word this stuff. They had fewer awakenings when they had a longer period of sleep deprivation. As in the first night of getting back into sleep after staying sleep deprived, they slept deeper or longer without waking.


Homeostatic sleep is the desire for sleep. So the longer you stay awake, the more sleepy you will become. (duh right?)

Slow wave sleep means deep sleep.

That's all I can do for now. My brain is all confused now and I can't concentrate anymore.

Let me know if you come up with anything else. We can keep trying to figure out what they mean. I wish they would just say it instead of trying to be all fancy!

#3 eightlegs

eightlegs

    Member

  • Members
  • 126 posts

Posted 26 May 2009 - 07:46 AM

QUOTE (Irishhh @ May 26 2009, 01:59 AM) <{POST_SNAPBACK}>
I wish they would just say it instead of trying to be all fancy!


laugh.gif my feelings exactly..lmao!!

I was kind of reading it the same as you... in that after sleep deprivation the participants slept better. My arousals are as you mentioned.. I am not aware of them... but apparently they are frequent.

#4 dogdreams

dogdreams

    Member

  • Members
  • 494 posts
  • Location:Portland, OR
  • Interests:Gaming, science, Halloween, music (am I being too generic??)

Posted 26 May 2009 - 10:12 AM

All this study says is that when normal people are sleep deprived, their bodies suppress the normal micro arousals they experience on an average night of sleep until they've recovered from the sleep deprivation. Scientists tend to make their studies sound as complicated as possible, don't they? lol

Your sleep fragmentation sounds like N to me, especially with the C. sorry your dr's are not listening.

#5 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 877 posts
  • Gender:Not Telling

Posted 26 May 2009 - 11:29 AM

my 1st sleep study - dr said IH or possible N
2nd, with diff dr - said N

I'm having hard time understanding something that you said, though. Did u say that the second test showed N, or that the 1st test showed IH and N? Because after that you say that the second test ruled out N.

Most meds don't work for me or they make me sick. I'm really sorry that you are having the same problem. And doctors. Ugh. Sheesh. Sometimes at least they try. Giving them some credit: Narcolepsy is so very difficult, and at this point in time, is so very hard to treat.

Here's a big hug for you: XXXHUGXXX



#6 hathor

hathor

    Member

  • Members
  • 103 posts
  • Gender:Female
  • Location:england
  • Interests:i have lots of interest. i love history, movies, books (stephen king,dean koontz and barbera erskine are my favs), my dogs, travel.

Posted 26 May 2009 - 01:07 PM

i have just had a look at the link. i didnt have a clue what any off it meant!!! i have helped a doctor here in england do a lecture on narcolepsy and totally understood everything he said, bt that link was over my head. what i did notice was tho it said healthy subjects. does that mean people that dont have anything wrong with their brain? and if so how can that help much with people with narcolepsy when the symptoms vary so much?

#7 Irishhh

Irishhh

    Member

  • Members
  • 178 posts
  • Location:Kentucky, Yes, we wear shoes!

Posted 26 May 2009 - 01:14 PM

QUOTE (hathor @ May 26 2009, 02:07 PM) <{POST_SNAPBACK}>
i have just had a look at the link. i didnt have a clue what any off it meant!!! i have helped a doctor here in england do a lecture on narcolepsy and totally understood everything he said, bt that link was over my head. what i did notice was tho it said healthy subjects. does that mean people that dont have anything wrong with their brain? and if so how can that help much with people with narcolepsy when the symptoms vary so much?


The only thing I could figure is that maybe comparing someone who is a normal sleeper to a non normal sleeper would give us information about the gap. Sleep latency in pwn's vs normal sleepers. and not that this was done in this particular study, but maybe it would be good to compare to see how much lack of sleep a non n would need to feel like a narcolepsy sufferer.

but you are right, it wouldn't do anything for us, but maybe it's all about comparison, and in that case, it might be helpful to us.

#8 hathor

hathor

    Member

  • Members
  • 103 posts
  • Gender:Female
  • Location:england
  • Interests:i have lots of interest. i love history, movies, books (stephen king,dean koontz and barbera erskine are my favs), my dogs, travel.

Posted 26 May 2009 - 01:29 PM

QUOTE (Irishhh @ May 26 2009, 06:14 PM) <{POST_SNAPBACK}>
The only thing I could figure is that maybe comparing someone who is a normal sleeper to a non normal sleeper would give us information about the gap. Sleep latency in pwn's vs normal sleepers. and not that this was done in this particular study, but maybe it would be good to compare to see how much lack of sleep a non n would need to feel like a narcolepsy sufferer.

but you are right, it wouldn't do anything for us, but maybe it's all about comparison, and in that case, it might be helpful to us.



i see the point about comparisons. i once saw a description about narcolepsy they said narcolepsy to a normal person is the feeling they would get if they worked a 48 hour shift and had no sleep the whole time, that is what it is like having narcolepsy. i thought this was a really good description.

#9 eightlegs

eightlegs

    Member

  • Members
  • 126 posts

Posted 26 May 2009 - 02:08 PM

lol.. sorry gang... I was pretty zoned out yesterday and apparently I was talking in circles. Basically both of my sleep studies were inconclusive. After the first study, my first dr diagnosed me with IH, but when I started to show signs of cataplexy, he changed his dx to Narcolepsy. I changed dr's because of the Xyrem incident, and the 2nd dr from interviewing me immediately thought I was N w/ cataplexy too.. but testing showed no rem on the mslt, so he "un" diagnosed me. The only peculiar thing about my studies, aside from being SLEEPY (duh) is the fragmented sleep.. lots of arousals. Doesn't explain the cataplexy, the IH's, the sleep paralysis.. all of which I've experienced since I was little, and didn't even know were weird until the dr's started to talk to me about N. go figure.

So seeing as how that spontaneous arousals are the only thing they can find unusual on paper, I was trying to find any info or studies about them I could... and see where it might lead me. I just found this one study and could make no sense of it what so ever.







#10 Irishhh

Irishhh

    Member

  • Members
  • 178 posts
  • Location:Kentucky, Yes, we wear shoes!

Posted 26 May 2009 - 02:24 PM

QUOTE (eightlegs @ May 26 2009, 03:08 PM) <{POST_SNAPBACK}>
So seeing as how that spontaneous arousals are the only thing they can find unusual on paper, I was trying to find any info or studies about them I could... and see where it might lead me. I just found this one study and could make no sense of it what so ever.


I will keep looking for info on this for you! and btw, I am terrified of spiders! That is one thing I hate having in my dreams, and I do it often! Your name makes me think only of that! lol

#11 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 877 posts
  • Gender:Not Telling

Posted 26 May 2009 - 02:41 PM

my god, i would love some spontaneous arousal

but when i wake up, the hunk in my dreams is ALWAYS gone

does narcolepsy cause feelings of inadequacy?

hell yes

#12 malachi777

malachi777

    Member

  • Members
  • 114 posts

Posted 26 May 2009 - 03:15 PM

QUOTE (eightlegs @ May 26 2009, 05:37 AM) <{POST_SNAPBACK}>
I'm getting frustrated again, and am poking around for more answers. Quick summary I've had two sleep studies (day and night) from two different dr's... first said IH, then narcolepsy, but then I switched dr's after having a bad reaction to Xyrem and getting no support. Second study came back ruling out narcolepsy, with an official diagnosis of "Upper Airway Resistance Syndrome" and "Repetitive Intrusions of Sleep". huh.gif I had 22.6 non-snore related spontaneous arousals an hour that no one can seem to explain... and funky fragmented sleep. I have cataplexy, (but I don't think the dr's believe me) and have tested positive for two of the 3 HLA types. That's what I know. Tried lots of meds... none of them really making much difference, or not for long.

I came across this study tonight.. and I just can't seem to make sense of what it's saying... can anyone translate?

http://cat.inist.fr/...cpsidt=16153023


I am so sorry you are having to deal with the unknowing. My questions are: 1 Did you take any meds prior to the study? 2. Did you take a nap the day of the night study? There are so many reasons we have night time intrusions, from apnea, hypopneas, periodic limb movement disorder, night mares and our internal clocks. It is obvious something is going on with you. I would ask for another daytime sleep study. It appears the night time study does not answer the question to your symptoms.

Upper airway Resistance Syndrome is not quite apnea, it is where an individual has to struggle with the breathing and they wake enough to start breathing properly again. Apnea is where breathing actually stops completely. I feel UARS leads to apnea because each causes similar symptoms other than the cessation of breath. I hope this makes sense to you.

One day, our sleep processes will finally be understood. Until then, we are stuck in this terrible bubble of uncertainty.

#13 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 877 posts
  • Gender:Not Telling

Posted 26 May 2009 - 03:20 PM

truth be told, there usually ar no hunks in my dreams. only family. NIGHTMARES.

8legs, we share so much with our N symptoms. I suppose that many of us do on here. A little of this from that person, and a little of that from this person... Just be careful how many of my symptoms that you share with me, ok? We don't want you to be like me. NONE of us do. wink.gif

I don't know what to tell you right now. Actually, there are a few things, but I'm having problems focusing and forming words for anything that requires true thought at the moment. That's the reason that I haven't commented on the title of this thread yet: I can't pay attention. I'm sorry, and i suppose that i shouldn't have jumped in on the thread, but the arousal comment was to hard to ignore, and also, I just want to participate.

#14 NeedLots0Advice

NeedLots0Advice

    Member

  • Members
  • 10 posts

Posted 26 May 2009 - 03:52 PM

i have a question about what some have said in this thread. i noticed some people said that medicines like xyriem and stuff some of you had bad reactions to. im wondering what kind of reactions? me myself i usaly have lots of problems with all sorts of meds i tend to be allergic to , they dont work, or they work oposite, or i have an extreamly bad reaction.

so just wondered if if aint to intrusive what bad reactions are you having with the meds. sounds like me sometimes cause i always react oposite of what it's spose to do.

#15 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 877 posts
  • Gender:Not Telling

Posted 26 May 2009 - 05:21 PM

like you, some meds are opposite: provigil.

some make me sick: xyrem - horrible, horrible, horrible worse than anything in life sick.

some don't work but have other side effects: concerta, ritalin (unless alot) with horrible shaking

otc: melanin - opposite
caffeine, nothing
there are others, but i have to think to much
that's not a cop out.
iz srs.
sry.

#16 NeedLots0Advice

NeedLots0Advice

    Member

  • Members
  • 10 posts

Posted 26 May 2009 - 06:01 PM

naw i don't see medicines having different effects on people a cop out?
provigil made me feel like i was in a quite room and everything was still and calm almost to the point i was sleeping.

1. what exactltly is provigil suppose to do? what is it for.

2. also on the side effects thought. thats what i was wondering was side effects. concerta also known as respiridol, it nearly killed me thankfully i was in a hospital when it was given to me, because it sent my heart rate up to 190 beats per minute (before they turned the monitor around so i could'nt see it). nearly died they had paddles rdy and gave me beta blockers and some other shots administered into my heart by the doctor himself.

so yea i know bout side effects. very leary of medication. smile.gif

#17 angellus

angellus

    Member

  • Members
  • 174 posts
  • Location:Atlanta, GA
  • Interests:Feeling well.

Posted 26 May 2009 - 07:04 PM

QUOTE (sleepless sleeper @ May 26 2009, 04:20 PM) <{POST_SNAPBACK}>
truth be told, there usually ar no hunks in my dreams. only family. NIGHTMARES.

8legs, we share so much with our N symptoms. I suppose that many of us do on here. A little of this from that person, and a little of that from this person... Just be careful how many of my symptoms that you share with me, ok? We don't want you to be like me. NONE of us do. wink.gif

I don't know what to tell you right now. Actually, there are a few things, but I'm having problems focusing and forming words for anything that requires true thought at the moment. That's the reason that I haven't commented on the title of this thread yet: I can't pay attention. I'm sorry, and i suppose that i shouldn't have jumped in on the thread, but the arousal comment was to hard to ignore, and also, I just want to participate.


did someone say arousal?

#18 eightlegs

eightlegs

    Member

  • Members
  • 126 posts

Posted 26 May 2009 - 08:07 PM

Oh the xyrem... um.. I had a whole thread about it somewhere here.. can't find it now.. but basically it worked great for a couple of weeks, while i was slowly working up to full dose, but 3 weeks in I spiraled into a crazy depression.. horrible, horrible... it was clearly the med because i was back to normal a day or two after stopping it.. but it was baaaaad. I thought I would crack. The xyrem reps said sometime that happens... but I wonder if I stayed at a lower dose, or went up slower.... if it might work..

#19 eightlegs

eightlegs

    Member

  • Members
  • 126 posts

Posted 26 May 2009 - 08:08 PM

QUOTE (angellus @ May 26 2009, 08:04 PM) <{POST_SNAPBACK}>
did someone say arousal?


yep.. wink.gif lots...

#20 eightlegs

eightlegs

    Member

  • Members
  • 126 posts

Posted 26 May 2009 - 08:08 PM

QUOTE (Irishhh @ May 26 2009, 03:24 PM) <{POST_SNAPBACK}>
I will keep looking for info on this for you! and btw, I am terrified of spiders! That is one thing I hate having in my dreams, and I do it often! Your name makes me think only of that! lol



Sorry.. no spiders here.. only octopi.. cool.gif