jenny

Narcolepsy Emotional Sleep Disorder- Mismanaged Emotions

53 posts in this topic

Hate you? Why? I think most of us would agree that there is some truth in everything. I just don't buy into the old soul gone awry end of it, that's all :P.

Chris"Toph4er"

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wow..really fascinating. I once saw a psychic on tv and without knowing this girl (18/19 yrs old) asked if she was a sleep walker w/ other sleep problems...and the girl said, yes. The psychic then told her it was caused by a past life experience and most people with sleep problems began having them in late teens early 20s because as our lives begin to change...graduation, leave home, college...we bring up previous/past life troubles. She was told if she wanted it to stop sleep walking and such to seek treatments in hypnosis to hash out her troubles. You can't believe every psychic but I do think some folks are definately tapped into something 'else' that the majority is not. But I saw that years ago and never did 'take action' w/ my N *LOL*. Truth is, every now and then I have amazing dreams...conversations with people...only ocassional not so nice ones that I'm not sure I would want 'cured'. Is there something more to the diagnosis of N?...I believe there might be...ONLY emotional 'bad' tendencies...NO. But there is spiritually more going on w/ this PWN.

...but I'll plead the Charles Shultz's Linus saying here...(paraphrased)

"There are three things I do not discuss at length with others...Religion, Politics and the Great Pumpkin!" :)

Sweet Dreams All....

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With an open mind, I have been "zenning" on the emotional aspect of it all and I must say, to some degree, a lot can be attributed to "emotional state" (past lives, pfft, hehe, but anywhoo).

I'm starting to realize that i'm "afraid" to fall asleep: Normally, the instant I close my eyes, the blue blobs start and morph into some subconsciously generated image (almost like I have no control over it and I'm just watching movies). I can then manipulate if I want to, but I find if I let it just "happen" then the next phase is "easy". Before realizing it, all is ultra-vivid and I am "inside" with the dream and then I am asleep -- sometimes I can remain lucid and "play along", sometimes I slip into the next "phase" of sleep (whatever that is for me, I don't know! LOL)

Now, there are rare times when my mind is clear and I close my eyes to pure black. After some time I have this absolutely terrifying sensation that I am falling into the abyss and startle myself awake. I suspect that this may be falling asleep "the normal way", but i just cannot deal with it! I have a paranoid sense that if I allow the sensation to progress, I will die -- horrible, but honest.

I can recall this same sensation when going under for surgery (I've had 15 to date for various things, multiple times in the first couple years of life for cleft palette/lip repair). Thinking out loud -- as I have been writing this -- it's dawned on me!!! Is the cause of my issues anesthesia???? Ponderous: it would be extremely freaky if EVERYONE with this condition has had some sort of major surgery in their lives (or have had been administered those types of chemicals to force sleep/coma - eg accidents and the like)????

That does it, look for a poll on surgery coming to a forum near you!!! LOL

HEY -- ANY DOCS READING THIS ?!? -- THOUGHTS? (is this quackery or a possibly valid theory?)

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Nope...I'll put a quick end to that theory! :) Sorry, no surgeries of any kind for this gal.

However, the fear of sleep thing instantly took me back to when I was little. I had some interesting dreams for a little kid. The one that sticks out was that the neighborhood was in a war and I could see a small mound of dirt the length of the yard with men there. So I slept with a lot of stuffed animals *LOL* they were my protectors from evil. Then, skipping ahead, in Jr High my routine Dr visit discovered I had a "heart murmur"....and that scared me awake alot but I would eventually just nod off. And then there is the fact I was very aware of world issues...i.e. the Chernobyl disaster kept my mind cruising for a good while at night. In my adult life, after my diagnosis, I've had fear of sleep (without going into detail) and I would listen to music to fall asleep. So...I can relate to that...but no surgeries. *knocking on wood*

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Yes, thanks to me, this thread is starting to fly way off on a tangent (thank you, thank you very much! LOL). Touching on fear of sleep - I was talking with my other half about this and I realized that for as long as I can remember, I'd have to have lights on or tv to go to sleep with. I also remember that I used to go off and "hide" in a black closet or even a locker (long story, but anywhoo) so I could watch some "movies" on my own terms (I think I was around 6 or 7).

Ahh, I just wanted to share :D

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No "fear of sleep" here...bring it on!

....I likes my sleep....

I don't see globs moving around...just a blam and it's there. Now, the dots I do see are more like this (Chuck, you've seen it): http://z15.invisionfree.com/Narcolepsy_Sup...p?showtopic=283 and just read through the thread so I don't have to re-explain it all here :P

On an interesting note (lol) I acctually posted a question about these dots on a forum that was dedicated to the supernatural or something like that which had a thread about dots that were eerily similar in description (it was a Google search :D).

Ah the connections!

Chris"Toph4er"

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On an interesting note (lol) I acctually posted a question about these dots on a forum that was dedicated to the supernatural or something like that which had a thread about dots that were eerily similar in description (it was a Google search :D ).

Oh my! What are you saying!?!

That we see dead people and we don't even know it!?!

(Chuck apologizes to the M. Night Shyamalan fans in the group for the poorly obscure reference!)

Here I go on a tangient again, but -- Chris, do you by chance have nystagmus? I do, and I also think that "the dots" are a contributing factor for my nystagmus....

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Hey Toph4er, the lama here and I wanted to chime in on your globs moving around. I looked at the photo you posted and the other details and it sounds a lot like Uevitis, which is an eye disease that causes inflammation in the eyes. It can be like looking through a rainy window, or lots of blurry dots all over, or blinding in some cases. It can also cause pheripheral vision damage. The challenge w/diagnosing and treating it is that if you are not having a flare up of it when seeing the eye doc, it is possible that it will not be caught for years, until the damage is permenant. Treatment is generally steroid eye drops and oral steroids for a bad flare up. If left untreated it has the real possibility of causing blindness. I know you had mentioned interest in my AS diagnosis in a different thread and said you have some symptoms and if you do have uevitis, it is a common diagnosis of people w/Auto Immune diseases. It was the first real diagnosis I received and my eye doc said he would bet his practice that I had a full auto-immune disease as yet to be discovered and encouraged me to keep pushing the docs to figure out what was wrong.

It might not be the same thing, but I wanted to get you this info just in case. Btw, the spots, globs, whatever can be seen w/the eyes open or closed. I used to wave my hand in front of my face as if I was swatting something my hubby would tell me it is just your vision, there isn't anything there.

I stay on top of the eye drops, but my peripheral vision is still going, however the drops really help w/the blurry spots, etc.

Take care!

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ditto and my perif (right eye esp) is deteriorating...thanks for the heads up! and chuck, I don't really have a clue what that is, but I'll ask about it :P. But yea, the dots are CONSTANT, never go away...always there, always all over...DAMNED AUTOIMMUNE DISEASES!!! :angry: :angry: :angry: :angry: :angry:

Chris"Toph4er"

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Before realizing it, all is ultra-vivid and I am "inside" with the dream and then I am asleep -- sometimes I can remain lucid and "play along", sometimes I slip into the next "phase" of sleep (whatever that is for me, I don't know! LOL)

I know what you mean! I love when I know I am dreaming. Once I realize I am, I start falling in blackness and then I have complete control.

The first time, during my second MSLT, I had this horrible nightmare, then I realized I was dreaming,and it was like I was in The Wizard of Oz scene with the twister when everything is kind of just floating around. Then it was great and I had a wonderful dream, which I played a conscious part in . It felt like hours. Then I woke up and the sleep study tech guy said "your naptime isn't over. You can go back to sleep." AT this point I was completely refreshed and just laid there in the dark planning my next dream. Little did I know I hadn't discoved a permanent way to control your dreams. But it was a lot of fun!

Sorry to go off topic here, but I had to say it.

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To follow up on the idea of a correlation of anesthesia and progression of narcoleptic symptoms. During my appointment with my neuro, we talked about this. I was a bit taken back (positively, of course) by how much his interest was piqued - to the point that he almost stopped listening to me and was browsing to study sites, LOL

As with other matters we discussed (eg Steroids), he referred me to the following sites.

http://www.iom.edu/

http://www.nationalacademies.org/

He considers these sites to be "gospel" because they are not swayed by special interests or funding from corporations.

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The article advises: "The only way to discover the causes of "narcoleptic episodes" is for the person having them to carefully monitor their thoughts and feelings just prior to an attack."

My thoughts and feelings prior to an attack - "Must go to sleep.....sooo, soooo...tired! I must go to slllllkjgjodogj,.c...... *zzzzzzzz*

:)

Honestly, that's all it is!

Sarahlue

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The article advises: "The only way to discover the causes of "narcoleptic episodes" is for the person having them to carefully monitor their thoughts and feelings just prior to an attack."

My thoughts and feelings prior to an attack - "Must go to sleep.....sooo, soooo...tired! I must go to slllllkjgjodogj,.c...... *zzzzzzzz*

:)

Honestly, that's all it is!

Sarahlue

Went to doctors cause feeling low had cat attack whilst trying to get my point across of how low my mood is at the moment, Flipping sent me straight to A&E to phsyciatric evaluation. What the f*** is that about. Just because I don't go away after getting my meds they trying to put me in mental ward for the second time, but cause I am not willing cause of past experience, To cut assesments etc down for you's, if I keep going in really low ,sometimes in tears due to everyday life and effects of meds,moods, dreams they don't know where to put me and cuase like I said I ain't willing to go in mental health unit, I could end up being put on a 28 day section. So this is how the people you are ment to go to WHEN THEY DON'T HAVE ANY ANSWERS FOR YOU THEY SHRUG YOU OF TO THE NEAREST PLACE WHERE YOU WILL BE FORGOT ABOUT, MAKING THERE LIFE EASIER NOT MINE.

Twats, Just cause they want to go and play golf and stuff.

Well at present I need my meds to keep me here, but all these so called doctors specialists, can all sit on my middle finger,mind you(they'll probably enjoy it).

people on this site and others show more support and advice that what I have ever had from them guys that think there better than us cause they have them white jackets, Well i'm gunna buy me own.

Anyway all those who have replied or giving me advice THANKS.

ESPECIALLY BAGPUSS FOREVER GRATEFUL

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I'm crap with words tonight but still wanted to answer - sorry if I've got things wrong.

I'm really sorry they did that Damian.

S/he's an utter *BEEP*wit!

I had that kind of stuff from G.P.s when talking about the - very reasonable and rational distress- considering the situation - and got cat from trying to talk about it, and from trying to handle their stupid *BEEP*wit responses, and so got threatened with section, again. But for me, so far, that was all pre diagnosis, and that's crap, but they had no training in N.

But post diagnosis, like what they done to you that's a whole different level of incompetence!

Their jobs to find something practical to help, and law is they can't section if psych treatment under section isn't going to help. Sorry youll know that.

Have you other practices nearby? Can someone come with you to talk/fight for you if you get cat in an appt? A local advocacy service could do it if you need privacy from family and friends. But they could need some education about N

really sorry they did this. and yeh, having our own white coats is about right.

be good to yourself.

Petra

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I'm crap with words tonight but still wanted to answer - sorry if I've got things wrong.

I'm really sorry they did that Damian.

S/he's an utter *BEEP*wit!

I had that kind of stuff from G.P.s when talking about the - very reasonable and rational distress- considering the situation - and got cat from trying to talk about it, and from trying to handle their stupid *BEEP*wit responses, and so got threatened with section, again. But for me, so far, that was all pre diagnosis, and that's crap, but they had no training in N.

But post diagnosis, like what they done to you that's a whole different level of incompetence!

Their jobs to find something practical to help, and law is they can't section if psych treatment under section isn't going to help. Sorry youll know that.

Have you other practices nearby? Can someone come with you to talk/fight for you if you get cat in an appt? A local advocacy service could do it if you need privacy from family and friends. But they could need some education about N

really sorry they did this. and yeh, having our own white coats is about right.

be good to yourself.

Petra

thanks for that petra

I think its crazy that you have a similar experience, we might as well chew a brick , get more satisfaction out of it and have an attack.

your right I do know that about physc. If they haven't got resonable prove/suspision that you could be harmful to yourself or others around you, inc general public.

or you have voices in your head that tell you what to do.

if you don't fit into these categorys then don't really have much authority then, sleep disorder is not a mental health issue its a neurologic sleep disorder.

As for someone representing me I would rather get my own views across about our problem. you never know might even get our own shelf oneday rather than being at the bac of draw/cupboard

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Well, this may or may not be the best thread to be my 2nd post on the forum, but hey, gotta start somewhere right?

I am a believer in Buddism, as well as other forms of Eastern Philosophy. In many years of personal study and instruction through college, I have never seen anything like what is written in the first post here portraying Buddhist philosophy or Karma in traditionally accepted writings. Teachings from the Dalai Lama himself are very different from what is listed here.

I only felt compelled to post here because we all understand the misconceptions of our illness with people who are unfamiliar; it seems we wouldn't want to continue ignorances or misconceptions of spiritual beliefs either and when I was reading that, even from a purely educational perspective, I thought it just didn't sound like traditional beliefs (some off-shoot or otherwise, maybe?).

PS--I grew up Southern Baptist, so it was my own journey to learn about other belief systems in a search to understand those who were not like me and my own ignorances. Little did I know, that would later include Narcolepsy and Ankylosing Spondylitis...I am no longer ignorant to disabilities as well. ;)

Now then. Exactly. Thank you for saving me alot of typing! ;)

Although I don't exactly buy into the original post, no one here can prove that this is not what is happening. Nor can we prove that it is. It is just one guy with a copyrights opinion. The point really for us to realize, that past lives aside, we are here right now. dealing with the here and now. we need to live in this world not in "the past".

I do find it interesting that so many people got upset about this though. lol. If I wanted to believe it, it would almost prove the guys point. :blink:

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Hey Toph4er, the lama here and I wanted to chime in on your globs moving around. I looked at the photo you posted and the other details and it sounds a lot like Uevitis, which is an eye disease that causes inflammation in the eyes. It can be like looking through a rainy window, or lots of blurry dots all over, or blinding in some cases. It can also cause pheripheral vision damage. The challenge w/diagnosing and treating it is that if you are not having a flare up of it when seeing the eye doc, it is possible that it will not be caught for years, until the damage is permenant. Treatment is generally steroid eye drops and oral steroids for a bad flare up. If left untreated it has the real possibility of causing blindness. I know you had mentioned interest in my AS diagnosis in a different thread and said you have some symptoms and if you do have uevitis, it is a common diagnosis of people w/Auto Immune diseases. It was the first real diagnosis I received and my eye doc said he would bet his practice that I had a full auto-immune disease as yet to be discovered and encouraged me to keep pushing the docs to figure out what was wrong.

It might not be the same thing, but I wanted to get you this info just in case. Btw, the spots, globs, whatever can be seen w/the eyes open or closed. I used to wave my hand in front of my face as if I was swatting something my hubby would tell me it is just your vision, there isn't anything there.

I stay on top of the eye drops, but my peripheral vision is still going, however the drops really help w/the blurry spots, etc.

Take care!

o Really? wow that kinda freaks me out a little! I have seen these things since I was in junior high. like all the time. I just assumed it was a normal thing.

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Went to doctors cause feeling low had cat attack whilst trying to get my point across of how low my mood is at the moment, Flipping sent me straight to A&E to phsyciatric evaluation. What the f*** is that about. Just because I don't go away after getting my meds they trying to put me in mental ward for the second time, but cause I am not willing cause of past experience, To cut assesments etc down for you's, if I keep going in really low ,sometimes in tears due to everyday life and effects of meds,moods, dreams they don't know where to put me and cuase like I said I ain't willing to go in mental health unit, I could end up being put on a 28 day section. So this is how the people you are ment to go to WHEN THEY DON'T HAVE ANY ANSWERS FOR YOU THEY SHRUG YOU OF TO THE NEAREST PLACE WHERE YOU WILL BE FORGOT ABOUT, MAKING THERE LIFE EASIER NOT MINE.

Twats, Just cause they want to go and play golf and stuff.

Well at present I need my meds to keep me here, but all these so called doctors specialists, can all sit on my middle finger,mind you(they'll probably enjoy it).

people on this site and others show more support and advice that what I have ever had from them guys that think there better than us cause they have them white jackets, Well i'm gunna buy me own.

Anyway all those who have replied or giving me advice THANKS.

ESPECIALLY BAGPUSS FOREVER GRATEFUL

lol. I sooo know what your going through! I am apparently BIPOLAR and they wanted to give me pills and pills and pills............ HELL NO.

the thing is those pills actually make you sleep more. When I first came here I was really angry and depressed because of my diagnosis's, but since I quit taking the meds, I am feeling so much better. I no longer feel like I am wasting my life tucked into bed. psych drugs are bad for you, good for the pharm companies and all their stock holders. Depression is a part of life. we all have ups and downs. some worse than others. drugs are not going to save you. you have to make a conscious effort to choose to be happy, and know that it will pass. lol... regardless of how you were in a past life! :P

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With an open mind, I have been "zenning" on the emotional aspect of it all and I must say, to some degree, a lot can be attributed to "emotional state" (past lives, pfft, hehe, but anywhoo).

I'm starting to realize that i'm "afraid" to fall asleep: Normally, the instant I close my eyes, the blue blobs start and morph into some subconsciously generated image (almost like I have no control over it and I'm just watching movies). I can then manipulate if I want to, but I find if I let it just "happen" then the next phase is "easy". Before realizing it, all is ultra-vivid and I am "inside" with the dream and then I am asleep -- sometimes I can remain lucid and "play along", sometimes I slip into the next "phase" of sleep (whatever that is for me, I don't know! LOL)

Now, there are rare times when my mind is clear and I close my eyes to pure black. After some time I have this absolutely terrifying sensation that I am falling into the abyss and startle myself awake. I suspect that this may be falling asleep "the normal way", but i just cannot deal with it! I have a paranoid sense that if I allow the sensation to progress, I will die -- horrible, but honest.

I can recall this same sensation when going under for surgery (I've had 15 to date for various things, multiple times in the first couple years of life for cleft palette/lip repair). Thinking out loud -- as I have been writing this -- it's dawned on me!!! Is the cause of my issues anesthesia???? Ponderous: it would be extremely freaky if EVERYONE with this condition has had some sort of major surgery in their lives (or have had been administered those types of chemicals to force sleep/coma - eg accidents and the like)????

That does it, look for a poll on surgery coming to a forum near you!!! LOL

HEY -- ANY DOCS READING THIS ?!? -- THOUGHTS? (is this quackery or a possibly valid theory?)

OOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:huh:

Where is this poll?

Has this topic been addressed somewhere else or should I just reply to this here?

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Hi Damian,

My GP laughed when I got C from him being verbally aggressive, so I moved practice. My new doctor is like a whole different species.

Yes, I want to be doing all of the speaking for myself too.

I'm looking for someone to come with me to sit there quiet, and not interfere, but who can stop all the stupid things Drs do when I get C. GP's fine, but some consultants I see aren't. Haven't found this wonderful patient person yet, maybe I'm talking about a guard dog.

Petra

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Hi Damian,

My GP laughed when I got C from him being verbally aggressive, so I moved practice. My new doctor is like a whole different species.

Yes, I want to be doing all of the speaking for myself too.

I'm looking for someone to come with me to sit there quiet, and not interfere, but who can stop all the stupid things Drs do when I get C. GP's fine, but some consultants I see aren't. Haven't found this wonderful patient person yet, maybe I'm talking about a guard dog.

Petra

hi petra

Glad you found another doctor that is discraceful.These are one of the people you look to when you are in need,what is going on with the medical profession.

Damian

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OMG!!! this is the kind of C--- I have heard over and over in different forms!! It makes me sick!!! Not only do people with Narcolepsy, or any other disease for that matter, have to live with their limitations but feel guilty about it too!!!

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This is a really old thread! But I when I googled 'past life narcolepsy' this is one that came up. Funny, right?! Anyway.

 

While I do not believe that this article holds true in all ways, I believe it brings up some valid points, but more so generalizations. For anyone who believes in reincarnation, they generally believe in karma and that we're here to learn lessons. These lessons change throughout our many lifetimes, etc. 

 

Personally, I think that Narcolepsy (and most everything else in our life) are here for a reason. Perhaps it is due to emotional patterns, like this article says. Or perhaps it is there so we might follow a certain path in life. Narcolepsy in general requires that we (PWNs) slow down. It's just not possible, even with medications, to go at full speed with the rest of the world. This really allows us to learn 'prioritization'. And I think all PWNs know this to be true. Since I can't do everything a normal person can in a day, I have to prioritize what needs to be done and what can be put on my 'to do tomorrow' list. It also allows us to really only include in our lives the things that truly matter. And this will be different for everyone. But again, it's about prioritizing things. So for some people, art may be really important and they have to make that fit in to their lives, and due to Narcolepsy, perhaps education isn't as important so it gets put aside. Others may find family and friends to be important and they include those but perhaps forgo a 9-5 job. 

 

I think in general, Narcolepsy is just something that allows us to be more in tune with ourselves, since we do have to slow down. It also gives us a gateway in to our dreams, and that brings out a lot of things - perhaps astral travel, or just creativity. These are more important for some souls than others, and thus may be more pronounced in some people. Cataplexy, too is something that affects our souls path. There are people with N and C and those with N but not C. How odd is that?! Well only odd enough to allow cataplexy to affect those who will receive some benefit (yeah I know cataplexy doesn't seem like a benefit but...) to their current incarnation. For one, it is just one more reason to slow down. Another, many people learn to control their emotional responses to hopefully avoid major C episodes and possible dangerous consequences. And on an even more obvious note, Cataplexy is something that doctors see and automatically associate with N. For some people it may be necessary for diagnosis earlier in life, and this factor can be a benefit when getting a diagnosis. Whereas others, perhaps diagnosis is more beneficial later in life and thus cataplexy may not be so necessary in this incarnation.

 

I just think it's very interesting stuff. I personally don't think of karma as good or bad. It's not that I do something bad and then must have something bad happen to me. It's more like, I need to learn this lesson and this person can help me learn it. And we play roles in the incarnations of others, so it may be necessary for me to 'help' someone by saying something mean or whatever, even though it doesn't seem beneficial, it may lead to something in their current soul progression. And perhaps I just need to learn how to stick with life and know that I'm a strong person and am capable, and thus I need a tragic life to show me that. Or if I'm learning about persona and ego, I may have a very materialistic and 'easy' life. It's not good or bad, they just have difference outcomes that teach us something we needed to learn. 

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My jaw dropped open that you can even associate N with what was written in the very first post of this thread. And, yes, I did read the whole thread.

Karma doesn't control N any more than it controls the common cold. If reincarnation really exists then there must be many multiples of each of us on the planet 'cuz the population is getting out of control.

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I read it so I could see what Ferret just read.

Some previous posters' words support the theory that they have lived other lives riddled with emotional problems. They may also have Narcolepsy. However, they have not provided any evidence that Narcolepsy is directly related to their lifetimes of emotional problems.

I dismiss the notions and equate them to Cargo Cults and self indulgence. If, however, the notion gives them comfort for their emotional problems, I would not think of denying them that comfort- they apparently have so little else.

I will move ahead with my world view of one God and one life and a medical explanation for my illness.

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