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#1 Asksuzan

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Posted 05 November 2013 - 01:57 AM

One of the signs I have noticed before I have a episode where I fall asleep or zone out (staring eyes open but not aware of surroundings) is a loss for words. Example I can look at a clock but can't say the word in a sentence. I know what it is just the name eludes me. I end up saying things like "what does the thing with hand and numbers".

A fork become pointy eat thingy

I get so frustrated!

#2 ironhands

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Posted 05 November 2013 - 09:07 AM

been happening to me constantly the past week or two, it's really annoying...  especially at work when all I want to do is go back to that... place.... where that thing I sleep on is.



#3 Gemma

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Posted 05 November 2013 - 02:16 PM

Gah! This happens to me constantly. It's really embarrassing when it happens at work. Sometimes it's whole sentences I can't formulate. I'll have the thought of what I want to express in my head, but I open my mouth and nothing comes out. If it's not in a work situation (where I'd hide that I couldn't remember how to say a simple thought by just not saying it or telling the coworker I'd get back to them in a few minutes), I just get frustrated and end up blurting, "you know, the thingy! The thingy's got to *sputter sputter* you know the thingy!!" And the person on the receiving ened will look baffled and slightly alarmed by this.

The other day, I was just walking along the sidewalk and realized that I couldn't remember what season it was. I was pretty sure it was either spring or fall, so by trying to remember what had taken place in the last few months, I eventually deduced that it was spring. I mean, fall! And then it took me a while to remember whether it was 2012, 2013, or 2014.

#4 Hank

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Posted 05 November 2013 - 11:12 PM

Well before my correct diagnosis, I had a 24 hr EEG. It showed fronto temporal slowing and bursts of bi-hempspheric slowing. I later found out that is Delta wave intrusion - basically sleep breaking into wake. This area of the brain is involved with speech and language, emotions and other cool stuff. At least I know why it is happening when it happens.



#5 Kimpossible

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Posted 07 November 2013 - 08:50 AM

I thought I was the only who did this!  Is this part of Narcolepsy or does this happen to everyone?  I complained to my GP a year ago about feeling liking I was losing my memory.  And it's only gotten worse since then.  It drives me crazy - especially when I'm taking a test and can't remember a word I've known for years/all my life.  I've known anatomy as a vet tech for 10 years and I am now taking anatomy for humans.  During our last test I couldn't think of the word transverse as in transverse process of the vertebra.  It's so frustrating!



#6 Psych13

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Posted 07 November 2013 - 04:01 PM

I have N and the same symptoms of word retrieval difficulties. I wonder if it might be comorbid dx of multiple sclerosis?

#7 rayraybaybay

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Posted 21 November 2013 - 11:46 AM

I thought I was alone! My family lovingly refers to me as "the Absent-minded Professor" because- despite the fact that I am very intelligent and educated- I can't think of words like "desk" when I need to (at times).

 

I've gotten into arguments with my husband over me fussing, "the THING! BY THE FRONT DOOR!... you KNOW what I mean!!!"

 

Very interesting about the Delta Wave intrusion Hank! It does seem to happen more in the mornings/evenings, and when I am most -tired.

 

I feel much better about myself! =) I think N might also account for my profound clumsiness and ability to lose ANYTHING 24/7!

 

The only thing I like about having a Dx of N is that now I know why I am the way that I am, and in some ways, I have much better self-esteem. Now I am not trying to change things about my personality, body, etc., that I cannot significantly change that can be directly attributed to N.



#8 ironhands

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Posted 21 November 2013 - 12:01 PM


I feel much better about myself! =) I think N might also account for my profound clumsiness and ability to lose ANYTHING 24/7!

 

The only thing I like about having a Dx of N is that now I know why I am the way that I am, and in some ways, I have much better self-esteem. Now I am not trying to change things about my personality, body, etc., that I cannot significantly change that can be directly attributed to N.

 

Bingo.  This, a million times



#9 Hank

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Posted 21 November 2013 - 06:19 PM

I thought I was alone! My family lovingly refers to me as "the Absent-minded Professor" because- despite the fact that I am very intelligent and educated- I can't think of words like "desk" when I need to (at times).

 

I've gotten into arguments with my husband over me fussing, "the THING! BY THE FRONT DOOR!... you KNOW what I mean!!!"

 

Very interesting about the Delta Wave intrusion Hank! It does seem to happen more in the mornings/evenings, and when I am most -tired.

 

I feel much better about myself! =) I think N might also account for my profound clumsiness and ability to lose ANYTHING 24/7!

 

The only thing I like about having a Dx of N is that now I know why I am the way that I am, and in some ways, I have much better self-esteem. Now I am not trying to change things about my personality, body, etc., that I cannot significantly change that can be directly attributed to N.

Here is my understanding of how this works:

- Delta waves are brain waves that occur normally during REM sleep

- Alpha waves are brain waves that occur normally during Stage 1/ transition from rest to light sleep

 

Orexin regulates sleep and we don't have any to get this job done, so:

- Alpha waves intrude into our sleep and fragment our sleep so that it is inefficient. This would be called "spontaneous arousals" on your PSG

- Because our sleep is so inefficient, we become sleep deprived even on a full 8 hrs of sleep or more

- Because we become sleep deprived, our brains try to catch up during the day and Delta waves intrude into our waking hours.

- Our brains also follow the natural circadian rhythm which dips about every 2 hours throughout the day. Just think of "coffee break" time and "siestas" in some countries. They are timed during these dips when everyone droops a bit. For PWN, these dips turn into crashes (aka sleep attacks). This is the same reason that the naps during the MSLT are scheduled every 2 hours after waking- they follow the circadian rhythm cycle.

- Orexin is produced in the brain and also in the gut. Gut Orexin is at its highest level when we are hungry and lowest after we eat. Just think of the lion who hunts when he is hungry and his Orexin levels are high- then- after he eats, he sleeps when his Orexin levels are low. So, we also get extra sleepy after a big meal because our gut Orexin is at its lowest.

 

If you google sleep deprivation, the symptoms are virtually identical to the symptoms of Narcolepsy. This is because the lack of Orexin destabilizes our sleep, makes it inefficient, then our brains try to catch up during the day- and voila- you have Narcolepsy.

 

Cataplexy is the muscle atonia aspect of REM sleep that intrudes into wakefulness which is triggered by emotions that are strongly felt. For unknown reasons, the brain does this- who knows- it is not well understood.

 

I hope this helps.



#10 lyssy813

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Posted 21 November 2013 - 06:28 PM

Bingo. This, a million times



#11 lyssy813

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Posted 21 November 2013 - 06:28 PM

I second that!!!

#12 CatLady

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Posted 21 November 2013 - 06:31 PM

I, too, have issues with forgetting simple words.  Being a teacher, this is not the best thing in the world to have.  Once I was trying to tell someone to open up the tailgate on my Jeep and couldn't remember the word tailgate.  I ended up calling it "the flappy thing". I'm glad it was one of my understanding friends I was speaking to.  There's a fairly strong incidence of Alzheimer's that runs in my family, and I was kind of worried that it was starting already.  Glad to know that N is to blame!



#13 ironhands

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Posted 21 November 2013 - 06:34 PM

 

Cataplexy is the muscle atonia aspect of REM sleep that intrudes into wakefulness which is triggered by emotions that are strongly felt. For unknown reasons, the brain does this- who knows- it is not well understood.

 

I've always felt that it occurs in sleep to keep us paralyzed, and not walking around or acting outwardly to what's going on in our dreams - it'd be counter evolutionary... As such the same mechanism gets confused during heightened emotion during the waking state, thinking we might be asleep and NOT walking around.  I haven't seen any studies on it, and I certainly know very little on C overall, seems to me to be a reasonable hypothesis.



#14 Hank

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Posted 21 November 2013 - 07:47 PM

I've always felt that it occurs in sleep to keep us paralyzed, and not walking around or acting outwardly to what's going on in our dreams - it'd be counter evolutionary... As such the same mechanism gets confused during heightened emotion during the waking state, thinking we might be asleep and NOT walking around.  I haven't seen any studies on it, and I certainly know very little on C overall, seems to me to be a reasonable hypothesis.

http://www.ncbi.nlm..../pubmed/8848973

 

Here is a good explanation of Cataplexy as dissociated atonia  from REM.

 

It has taken me a lot of homework to understand why I fall down. It is all so complicated but boils down to something so simple. Who would ever know the body paralyzes itself in dream sleep- we're supposed to sleep right through it and never give it a thought.



#15 rayraybaybay

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Posted 22 November 2013 - 12:03 PM

Here is my understanding of how this works:

- Delta waves are brain waves that occur normally during REM sleep

- Alpha waves are brain waves that occur normally during Stage 1/ transition from rest to light sleep

 

Orexin regulates sleep and we don't have any to get this job done, so:

- Alpha waves intrude into our sleep and fragment our sleep so that it is inefficient. This would be called "spontaneous arousals" on your PSG

- Because our sleep is so inefficient, we become sleep deprived even on a full 8 hrs of sleep or more

- Because we become sleep deprived, our brains try to catch up during the day and Delta waves intrude into our waking hours.

- Our brains also follow the natural circadian rhythm which dips about every 2 hours throughout the day. Just think of "coffee break" time and "siestas" in some countries. They are timed during these dips when everyone droops a bit. For PWN, these dips turn into crashes (aka sleep attacks). This is the same reason that the naps during the MSLT are scheduled every 2 hours after waking- they follow the circadian rhythm cycle.

- Orexin is produced in the brain and also in the gut. Gut Orexin is at its highest level when we are hungry and lowest after we eat. Just think of the lion who hunts when he is hungry and his Orexin levels are high- then- after he eats, he sleeps when his Orexin levels are low. So, we also get extra sleepy after a big meal because our gut Orexin is at its lowest.

 

If you google sleep deprivation, the symptoms are virtually identical to the symptoms of Narcolepsy. This is because the lack of Orexin destabilizes our sleep, makes it inefficient, then our brains try to catch up during the day- and voila- you have Narcolepsy.

 

Cataplexy is the muscle atonia aspect of REM sleep that intrudes into wakefulness which is triggered by emotions that are strongly felt. For unknown reasons, the brain does this- who knows- it is not well understood.

 

I hope this helps.

 

Fascinating! Thanks for the well-thought out, yet concise explanation- I never fully understood the real significance of the Alpha/Delta waves!

 

I had deduced before my data came back (and was told by my Dr. when Dx'd) that my sleep disorder had more sleep fragmentation features and all the fun, various sleep disturbances, as opposed to having as many severe daytime issues.

 

I do not have cataplexy, and though I had a positive MSLT, my N was Dx'd through the #2 set of minimum Dx criteria from the American Academy of Sleep Medicine which included the disrupted sleep on my PSG, a 4-minute sleep latency on the PSG, and a 4-minute mean latency on my MSLT (amongst a few other things).  

 

At first- not knowing much about narcolepsy, and only even getting the sleep study for horrible nightmares and EDS which I directly attributed to the nightmares- this made me question my Dx, because I didn't fully understand the full daytime+nighttime spectrum of symptoms. It is interesting to see that I may indeed have more symptoms related to the Delta-waves intruding during the day than I originally thought I did; though I guess it is an inevitable result of the Alpha-wave intrusion at night!

 

Your explanation solidifies what I only had a murky understanding of before, and it will truly be helpful when explaining to people that you don't have to "be like that dude in Rat Race", or even exhibit as many obvious daytime symptoms in order to have your life greatly impacted by narcolepsy.



#16 Hank

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Posted 22 November 2013 - 03:46 PM

Rayraybaybay- remember also that it can take a long time to build up a gigantic sleep debt when EDS symptoms can become extreme. Even a few late nights, a fun packed weekend or a rough week at work can push us into the extreme side.

 

"Lifestyle adjustments" like an adequate and predictable sleep schedule, stress reduction, diet and exercise- which are good things for everyone- are especially important for us.

 

If your symptoms have not reached the "extreme" level, you must have been managing your life well enough that sleep deprivation has not gotten too far ahead of you.

 

Don't ever think you have a "mild case" of Narcolepsy- it is, by its very nature, an extreme diagnosis. Its so much like being a Type 1 diabetic- lifestyle management can keep a diabetic well managed and avoid extreme swings.

 

I am glad to know that my explanation was useful for you- it has been very important to me that I have a concise and thorough understanding of this so that it takes so of the mystery out of it. We are all normal people, living with the normal process of sleep deprivation, which is caused by an abnormal immune reaction that destroyed our Orexin cells. It just makes me feel better to know that.



#17 Potato

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Posted 22 November 2013 - 10:39 PM

Just to introduce some terminology to this conversation, what everyone is describing relating to failed word selection is called anomic aphasia. The chronic form is almost always associated with brain damage, but people in this thread, including myself, suffer from transient bouts of it. I strongly suspect that even otherwise healthy people, when sufficiently sleep deprived, will exhibit the same deficit.

 

Also I don't want to come across as rude but there appears to be an error in some earlier information given that seems significant enough that it should be corrected: Delta waves occur in NREM (stages 3 and 4) sleep, not during REM sleep. A distinction can also be made between alpha waves that normally occur during waking, and alpha waves that normally occur during REM sleep. But in both cases, alpha waves may or may not be present. On an EEG, REM and the waking state are fairly similar and the majority of the EEG will be dominated by fast low-voltage random oscillations with occasional development of identifiable wave patterns or other EEG markers.

 

In PWN there is typically decreased SWS/delta waves and increased REM. PWN want to have more SWS/delta waves and less REM, so it's important that the sleep stage and associated wave pattern be crystal clear.



#18 Hank

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Posted 23 November 2013 - 10:35 AM

Just to introduce some terminology to this conversation, what everyone is describing relating to failed word selection is called anomic aphasia. The chronic form is almost always associated with brain damage, but people in this thread, including myself, suffer from transient bouts of it. I strongly suspect that even otherwise healthy people, when sufficiently sleep deprived, will exhibit the same deficit.

 

Also I don't want to come across as rude but there appears to be an error in some earlier information given that seems significant enough that it should be corrected: Delta waves occur in NREM (stages 3 and 4) sleep, not during REM sleep. A distinction can also be made between alpha waves that normally occur during waking, and alpha waves that normally occur during REM sleep. But in both cases, alpha waves may or may not be present. On an EEG, REM and the waking state are fairly similar and the majority of the EEG will be dominated by fast low-voltage random oscillations with occasional development of identifiable wave patterns or other EEG markers.

 

In PWN there is typically decreased SWS/delta waves and increased REM. PWN want to have more SWS/delta waves and less REM, so it's important that the sleep stage and associated wave pattern be crystal clear.

Thank you for correcting that. You helped me understand better and I appreciate that.

 

When I initially had a 24 hr EEG before diagnosis, it showed alpha intrusion at night and delta (maybe I am incorrect) intrusion during the day. During the day, it showed "frontotemporal slowing" and "bursts of bi-hemispheric slowing".

 

After I was diagnosed, I asked my doc about this. She said that is what Narcolepsy looks like when you don't know you are looking at Narcolepsy. Apparently, a narcoleptics brain waves are marked by the inappropriate intrusion of waves that belong elsewhere- both day and night. So, we have a lot of glitches.

 

I am trying to understand the reasons for those glitches. It helps me to know the glitches have a reason- and that helps me to manage my life better. It reminds me of my first car- lots of quirks and glitches- it was all I had and I loved it.



#19 Ferret

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Posted 23 November 2013 - 11:36 AM

Reminds me of an old camp song from when I was a kid...

"My old Flibber is a right good friend,
All ya gotta give 'er is a twist and a bend.
She's not worth a nickel but I'll bet my jeans,
She's gotta a million dollars worth of smiles from me.
She needs new tires, front and rear
The horn won't speak to the stearin' gear.
She's a little lopsided and her lamps don't light.
But, outside of that, my Flibber's all right.
Honk diddley 'onk, 'onk, beep, beep!"

#20 doinmdirndest

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Posted 26 November 2013 - 02:38 AM

once I could not remember the name of the actress that played agent clarice starling in 'the silence of the lambs'- and i'm a movie buff.  I should be able to recall who Jodie foster is.  just yesterday I could not recall the word 'caning' -means the weaved seat in some antique chairs in a discussion with my boss.  embarrassing!  happens pretty regular for me.  my better half gets the same malfunction now and then; had a name for it since before I met her.  'word search'

 

she remarked once. 'there is nothing worse than word search'  I said 'oh, yes there is; item search'.  item search is eventually inevitable here in the house of many things, where we live.  the many things are way, way cool old vintage things.  we both love them!  yet it's a test of patience/determination when things like wallets and car keys get swallowed up by it all.     

 

I can get it lined up and squared away and do from time to time.......but 'item search' will rear it's ugly head yet again, if we stay on this side of the grass for long.  so will word search.

 

life's good, though.  sirah sirah and all that s







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