Dreams, Reality, and Knowing the Difference Between Them When You Have Narcolepsy

People with Narcolepsy...I have a question for you.

Are there memories that you have of events that seem crystal clear in your mind, but something either happened where you realized that that event didn't really occur, or others may tell you that they don't ever remember it occurring?

I remember coming home from work one night, and it was very late, probably around midnight. I remember looking out the window, and seeing a blue and orange spiral object moving across the sky. It almost looked like DNA strands, twirling through the pitch black sky.  It was beautiful!  Here's the thing...I only started to remember seeing it, years after it happened and it didn't seem like it shocked me.

I didn't remember it being a UFO. I remembered it being something that was supposed to occur, similar to how we see eclipses occurring infrequently in time. Like these events that are unusual, but we know when they are going to happen, and we know what they are when they do.

That's how I remember this DNA strandy-ish kind of thing. Every time I think of it, I try to find info about what it could have been, as if maybe I am just missing something. Then my rational mind speaks to me and says something like, "What in the heck are you thinking, you crazy Narcoleptic!".

And now for the point of the post...

I knew that Narcolepsy can effect my memory, I mean I can say something to someone and 5 minutes later (or less) repeat the exact same thing, with NO memory of previously saying it at all. If I had a dollar for every memory gap that I have in my life, I would have...uh...probably a lot of dollars, but I, of course, am not sure...

So here comes the interesting stuff.  I know I am not alone, but there are specific studies done regarding delusional confusion of dreaming and reality in Narcolepsy. Did I actually dream about that DNA in the sky?  I swear I saw it, and if I didn't know better, I wouldn't accept that it could have been a dream, but I do know better. Damn. It was so cool, and a little part of me still thinks that one day I will find some obscure info about it happening, and I will say HA HA! I win!

Until then, if you are interested you can check out the links below for some info about this phenomenon.

Delusional confusion of dreaming and reality in narcolepsy.

Dreams, reality and memory: confabulations in lucid dreamers implicate reality-monitoring dysfunction in dream consciousness

Story-like organization of REM-dreams in patients with narcolepsy-cataplexy.

P.S. This blog entry, is in no way trying to imply that Unicorns are just a delusion or a figment of imagination. Unicorns are indeed real, and I have seen them on my balcony many times, during both day and night.  Unicorns, however, cannot be photographed...so...

 

How Xyrem Probably Works-Good Info from a Smart Girl!

I took Xyrem for Narcolepsy about 5 yrs ago.  I took it for I think about 6 months, although I may be wrong because those months are quite cloudy.  Other than the face swelling, major anxiety, bloody hangnails, head thrashing, wanting to die and not being able to breathe through my nose, it was a pretty good experience...or not. 

Over at the Zombie Research Institute, one of my favorite websites, Heidi L. has some great information about millions of things having to do with Narcolepsy and so much more.  

You can read her section entitled "How Xyrem Probably Works" here  and it is most interesting.  She does some serious research, and all of her stuff over there is so worth taking the time to read.  So go read it.  Save your brain from Zombietude.  

In other very important news:

Patchy and Pudgy, the pigeons that 

live on my balcony had babies!  

They are so ugly that they are cute!! 

They are so tiny! Don't you want to just squeeze them!!

Depression in Narcolepsy: High Probability

Hola everyone!  I have been looking for more and more info regarding Narcolepsy and Depression.  It seems from what people are searching for, this is a popular search, and so I am trying to find more interesting resources to give.  Narcolepsy and Depression, to me go hand in hand, and I think that most people with Narcolepsy already know this, right?  But it is interesting to find studies that give us percentages and figures.  Well, at least it is kind of interesting to me:)

Here is a link to a study done at Lesley College way back in 1996.  I do, however, think that it is quite relevant today.   Please click here to read it, or you can read the abstract below.

Depression in narcolepsy: concomitant or constituent?
LINDSLEY G, CRAWFORD B Sleep Research 1996; 25: 279.   Lesley College and Quintiles/Benefit Research


Abstract:
According to recent studies, the comorbidity rate of narcolepsy and depression is estimated to be between 30-52%, as compared with a depression prevalence rate of 8.1% in the general population. Our current study provides further support of the significantly elevated comorbidity rate of narcolepsy and depression, and extends these findings. Subjects were 22 men and 44 women between the ages of 17 and 76 (mean=49ñ15.24) who completed a survey intended to assess the financial burden of narcolepsy. Estimated age of narcolepsy symptom onset was 20 yoñ10.64. The mean age of diagnosis was 34 yo ñ 11.49 years, with a mean lag of 14ñ11.53 years from estimated year of onset. According to the subjects' retrospective reports, 46% carried an accurate diagnosis of depression prior to their diagnosis of narcolepsy. Strikingly, 56% of the sample continued to carry this diagnosis during this past year. There was also a high comorbidity with diagnoses of anxiety. 32% carried this diagnosis prior to identification of narcolepsy, which increased to a rate of 35% within the past year. Overall rate of moderate to severe mood disturbance was 58% of the sample pre-narcolepsy diagnosis, which stayed essentially the same, 57%, during the past year.


Looked at separately, the five subjects in the sample < 25 yo had a lag of 0-5 years from onset to diagnosis. The data showed essentially the same trends with respect to associated diagnoses of depression and severity of mood disturbance, except that anxiety frequency increased rather then remained the same during the past year.


With respect to co-relationships among potentially relevant variables, severity of depression was independent of reported severity of EDS, cataplexy, disruption of school or work life, and medication. As graphed below for the current year data, however, there was a striking relationship between severity of depressed mood and presence/absence of anxiety diagnoses, with anxiety diagnoses increasing as depressed mood increased. Severity of depression also had a similar relationship with difficulty focusing and concentrating (cognitive disturbance).


In conclusion: (1) The probability of depression in association with narcolepsy is very high; (2) Formal diagnoses of depression are significantly related to diagnoses of anxiety; (3) Severity of depressed mood appears also to be related to degree of cognitive disturbance; (4) Depression increased rather than decreased across the life span in these subjects whereas anxiety increased in our small sample of young people but decreased moderately from prediagnosis to the current year in the total sample; and (5) that there was no obvious relationship between subjectively reported severity of depressed mood and severity of EDS or cataplexy, degree of disruption of school or work life, or type of medication. These data reinforce how critical it is to address affective disturbance as well as the primary symptoms of narcolepsy when treating narcoleptic patients. In addition, the high comorbidity rate of depression with narcolepsy, even when EDS and cataplexy are more or less under control, raise the question of whether depression is actually a constituent rather than merely a concomitant of narcolepsy.


Research supported in part by Cephalon, Inc.

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Interesting?  When research is supported by drug companies, I usually am a bit skeptical, but this study isn't surprising to me, nor does it seem unlikely.  What do you think about it?  Leave a comment if you like, I would love to hear your thoughts on this.


Until next time,
Via Con Dios,
Ja:)

Narcolepsy and History...Doctors Are Not Always the Smartest People...

I have recently had the opportunity to read some medical journals and reviews about Narcolepsy dating back to the late 1800's.  I realize that we know so much more in today's world, but damn!
There is absolutely no doubt that medicine in the 1800's and early 1900's was frequently scary as hell, just take a look here and the so scary, I could pee my pants selections here, at the "Dr. Bonkers Institute", to get the picture.But back to Narcolepsy...

I was perusing the 1897 book entitled, "Sleep: its physiology, pathology, hygiene, and psychology." by Maria Mikhailovna Manaseina and not only did I vomit a little while reading, but It so sadly reminded me of the attitudes of so many people during those times, and how scary it is to think that there are probably some people that actually have similar attitudes and beliefs today.  Below is a selection from this old piece of doo doo, "medical" book...

Oh no she didn't!  Ok... it's 1897...we didn't know much then...blah blah blah...HELL NO!  I don't care what year it was, she actually used the word "always".  Read it again please...She says people with Narcolepsy always come from lower and least developed classes or from families with "nervous or mental disease".  That is not a medical statement, that is a stereotypical, stupid statement of idiocy.  Man, all I can say is that I am so very thankful that she was not my doctor!  Thank you Jesus!  

You too, can also read this mind numbing "medical" book online for free by clicking here. There are so many statements in this book that are grossly racist and just plain nuts. But sadly, it is history.

I am a believer in knowing the truth about history and learning from it as well, but sometimes, well, actually, a lot of the time, it really is a hard pill to swallow.  So many throughout history suffered and fought for freedom, and were treated in ways that we could never imagine.  We've got to honor those who suffered and paid the price for our freedom today, and pray for those that still suffer unimaginable circumstances even today. 

Medical issues are just one piece of the pie.  All I can say is that I feel like one of the most blessed people in the world. 

From all I can find, Maria Mikhailovna Manaseina was a noted Russian physician and scientist that studied sleep.  If she were here today, I would have to tell her to kiss my Narcoleptic ass!!!  

History lesson concluded.

 

Narcolepsy as an Autoimmune Disease

Since the discovery that Narcolepsy is most likely an Autoimmune Disease, I know I have been combing the web for information on new developments and articles discussing this topic.

I found a link provided by Medical Planet, that offers a free download book (pdf) called "Narcolepsy and Hypersomnia (Lung Biology in Health and Disease)". One of the editors is Emmanuel Mignot, so I am thinking that it might be a good read. Here is the description of the book from the blog page at Medical Planet,

"This is the first and only guide to discuss narcolepsy as an autoimmune disease. Compiled by an international group of more than 40 authors, this reference book supplies an engaging and comprehensive review of the major topics and key issues associated with narcolepsy and hypersomnia. Spanning the latest advances in the field, this source covers current diagnostic procedures, genetic developments, explorations of animal models, new definitions and criteria, and improved epidemiological surveys to reflect the explosion of research in this evolving science."

The book appears to be published in December of 2006. I have downloaded the book but I have not yet had a chance to read it yet. It has 736 pages!! You can download it HERE.

With the download, there are some other files that come with it that appear to be links to other services and possibly material that the website might be trying to sell, but you don't have to open them unless you want to. My computer did not detect any virus or malware with this file download, but of course, make sure you check it on your computer, just to be safe!

I hope that this will be useful to some of you, and the website the book came from looks pretty interesting too, although this was my first visit.

If you get a chance to check it out, please leave a comment!

Go Easy!
Ja

Scientists pinpoint genetic driver of narcolepsy

Scientists pinpoint genetic driver of narcolepsy- click here for a link

I have been seeing quite a few news articles related to this genetic discovery in the past week.

Scientists in Japan have identified a genetic mutation linked to narcolepsy. I wonder what this means for the future of those with this disease, and finding a cure or alternative ways of treatment. Pretty interesting stuff!

On a side note, I have been sleeping approx. 15 hrs. a pop/day, for about a week. Today, I woke up, and felt like I had energy. I forgot what that felt like. I will NEVER take any energy or "good" days for granted! Oh what a great feeling it is to feel like moving, reading, working, shoot, doing anything!!

How are all of you doing?

This puppy was at the gas station, and I had to take a pic! What a cootie bug poo!!!

Obama is Really an Atheist!?

You know, If you have read any of this blog, it is apparent that I have Narcolepsy. So many people have said things to me like, "oh yeah, my cousin had that, and his doctor gave him a cure". Ok, no big deal. Sometimes, we, including myself, don't know what the heck we are talking about. When someone said the above to me, I said to them "no, there is no cure for Narcolepsy, maybe it was something else". I said this, trying to be nice, polite, whatever. They replied, "no, it was Narcolepsy, you should go get cured".

Stupid. People say things all of the time, without looking into what they are saying. Just like the deal with Barack Obama. I keep seeing people claiming that this man is a Muslim. I think to myself...So what if he is. But the fact is HE IS NOT...and no, the title of this entry is not true either. Barack Obama has said repeatedly that he is a Christian. All facts and historical information lead one to clearly see that he is telling the truth. But I wonder how many people just believe something, just because someone said that it was so.

This goes way beyond our news headlines or the presidential races. Think about your every day life. Do you believe something about someone, or anything just because someone says it is true? If you hear something that might make an impact on your life, or others' lives, do you check it out, or just go on spreading the information, not knowing if it is a fact, or not?

Read. Read more. If you are not sure, or it is a matter that is different depending on opinions, investigate, form your own opinion. Don't just rely on someone else's statement without being informed. Duh. And if you were wrong, just admit it. I don't know about you, but I think that a person that can admit that they are wrong without getting all bent out of shape about it, is a person of strong character. When I hear someone saying that "oops" they were wrong, sorry about that, etc. I trust them even more, and feel that that are a person that I can trust a little more.

So, here it goes...
Elvis does not currently work at a Burger King in Michigan.
Bill Gates will not send you money if you forward an email to ten people.
and no...that pill will not make you lose weight while you sleep...believe me, I've tried.

Please, hop on the clue bus...all are welcome.

Myths and Facts About Narcolepsy - With a Little Personal Experience Added For Good Measure!

It's time to get to the facts! There are facts about Narcolepsy, and there are Myths. Let's see if we can make some of the facts about Narcolepsy clearer.

No, I am not like one of the characters in the movies "Rat Race" or "Deuce Bigalow".

I have Narcolepsy.

You will not find me standing in the middle of somewhere asleep.

No, it is not contagious.

I know that I had practically no real knowledge of what Narcolepsy was until in the process of being diagnosed with "whatever it was" that I had. It took 14 years to come to a proper diagnosis.

Today, I would just like to give you all a few important facts about Narcolepsy, as well as clear up some of the myths. So, stick with me, don't fall asleep, and read on!

First let's start with the basics:

Narcolepsy is a chronic sleep disorder with no known cause. The main characteristic of Narcolepsy is excessive and overwhelming daytime sleepiness, even after an adequate night's sleep. A person with Narcolepsy is likely to become drowsy or to fall asleep, often at inappropriate times and places. Daytime sleep attacks may occur with or without warning and may be irresistible. These attacks can occur repeatedly in a single day. Drowsiness may persist for prolonged periods of time. In addition, nighttime sleep may be fragmented with frequent awakenings.

This is a very basic description of what Narcolepsy is. There are so many other "classic" symptoms that can occur with Narcolepsy, and I will discuss those further in other posts, but above is a very basic idea.

So now, on with the Myths!

Myth # 1 Narcolepsy effects each person in the same way.

This statement could not be any further from the truth! Each person is effected differently. Some will say that their worst symptom is daytime sleepiness. Others will say that Cataplexy, (which I will talk about more in the future) is the most debilitating symptom. Among all of the symptoms that can occur with Narcolepsy, some will have all of them, and others, maybe only a few. Some people's symptoms will be very severe, while other will only have mild symptoms. Each person is different.

Myth # 2 If people with Narcolepsy would just get more sleep, or go to bed earlier, they would be ok.

NOT! I know that sometimes, when a person has an illness that is not easily seen by simply looking at them or talking with them, it can be difficult for one to actually realize, or believe that they are really ill. With Narcolepsy, the amount of sleep is not the problem; it's all about the quality of sleep.

According to JEROME M. SIEGEL , professor of psychiatry and a member of the Brain Research Institute at the UCLA Medical Center. "People who are not narcoleptic begin their nighttime rest with non-REM sleep, with REM sleep following roughly 90 minutes later. But narcoleptics frequently go straight into REM sleep. Because of this trait--and because narcoleptics experience loss of muscle tone and dreamlike hallucinations that normally occur only during REM sleep--researchers have hypothesized that these symptoms of Narcolepsy result from the inappropriate triggering of some aspects of REM sleep."

So in layman's terms; People with Narcolepsy have sleep cycles that usually are quite screwed up. This being true, Narcolepsy can cause a person's sleep quality to be extremely poor and non-refreshing, regardless of the length of time they sleep. Let me just say, I could sleep 20 hours, and might wake up to feel like I never slept. Again, everyone is different, and each day is different too!

Lastly, for now, so I don't put anyone to sleep,

Myth # 3 There is an established cure for Narcolepsy.

Research being done today for Narcolepsy looks quite promising, but, currently, there is no cure for Narcolepsy that has been found....yet. There are many different medications used for treatment, and many people do well with these therapies. I have even heard of some turning to alternative medicines to treat Narcolepsy, with some positive results. Again, everyone is different.

I know some people with Narcolepsy that work full time jobs, with a family and even actually have extracurricular activities. Others that I know are in wheelchairs, or a full disability income, and cannot work at all. And then there are the many others in between.

Remembering that we are all different is a key element. If you know someone with Narcolepsy, or have it yourself, it is a waste of time to compare them (or you) with someone else who has this illness.

If you know someone who has Narcolepsy, and want to know more about how they feel or are effected by this illness, then why don't you just ask them? They are an expert. They know themselves and how they feel, better than you or anyone else, just like you know about you better than anyone else. If the person wants to share knowledge with you, you will most likely gain a wealth of information, and a better understanding of the person themselves.

I have Narcolepsy. People who ask me questions and don't just assume they know how I feel or how the illness effects me are a breath of fresh air! People like that make me feel accepted. It feels like they really do care.

Click Here to go to the first page of this blog - "The Adventures of a Sleepy Woman".