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...

 

New Journal Article - Narcolepsy Treatments...Very Interesting

Hola everyone!

While perusing the curehunter.com database, I found a new article to be published this July, written by Stanford's own Christian Guilleminault, Mia Zaharna, and Alex Dimitriu.

The reasons that I find it sooo interesting is that it describes Narcolepsy as a neurodegenerative disorder, instead of the usually described neurological disorder.  Also, there are some new treatment options that they mention that I had not heard of yet connected to Narcolepsy. The abstract states:

"For each of these treatments, we evaluate risks versus benefits of treatment, and proposed pharmacologic mechanisms of action. We conclude with a review of new treatment approaches, including thyrotropin-releasing hormone (TRH), histamine agonists, immunotherapy and hypocretin replacement therapies."

Have any of you heard of  thyrotropin-releasing hormone (TRH) therapy?

You can access the abstract by clicking here.  Please let me know if you have any insight into this abstract or any comments would be appreciated.  It seems to me that it is a pretty important step in introducing some optional treatments for Narcolepsy. 

And by the way, it is just me, or is it a new thing to describe Narcolepsy as a "neurodegenerative" disorder? 

Ok, the dogs have nothing really 

to do with Narcolepsy, but I love them!  

This is Jack and Kenny my sister's dogs.  :)

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.

------
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!!!

What do you do after you have tried everything?

What do you do after you have tried everything?

When your health is getting worse, and nothing that you try works?

Narcolepsy is so tricky, and I guess just like everything else, what works for one person, may not work for another. Anyone out there with Narcolepsy, have any advice? I have taken Dexedrine for about 5 years now, with no increase in dosage. I worked full time, up until approx. one and a half year ago. First I went down to part time, then I was let go. I got the award for employee of the year! How could they just let me go??? Even after all of this time, it is like it happened yesterday. I guess my job was my life. It was the only stable thing I had.

I am sorry if this a a depressing post. I just am letting it out...the cats out of the bag. I am not the "together" person that most think I am, and I am at a loss when it comes to what to do. I lost my job, my apartment, my car. I work part time now.

I know I am blessed. I just am getting to the point where I cannot imagine living like this for the rest of my life. I don't want to die, I just don't want to live like this. I have been independent for most of my adult life. I think when one loses this independence, it can truly wreak havoc on your self worth, or your perceptions of yourself. I want to be a active part, a useful positive part of this world again.

I know God knows what is going on, I just can't figure out what he wants me to do...

or not do.

Narcolepsy Makes Me Awake?

It is now 4:03am. I am so awake. I just worked my bootie off, well, nope, it is still there, but really, I worked super hard, and I am mentally more alert than a...hmmm...look, I am just reallly awake.

Narcolepsy is funny like that. I think a lot of people just think that Narcolepsy makes people sleepy all of the time, and they can never stay awake. But I am here to tell you, that ain't so. Can anybody relate?

Well, I hope you all, who are reading this will have a great weekend.

Go Easy, and may God bless,
Ja

Is it just me, or is this kinda not new info - "Narcolepsy May Be Caused By Environmental Exposures"

There is an article recently published by The American Academy of Sleep Medicine entitled "Narcolepsy May Be Caused By Environmental Exposures". It has been posted on many websites, and blogs lately.

While I find this article interesting, I just keep saying to myself "what is really new about this information"?

Maybe someone out there can tell me, but this article just seems like it is non-conclusive, and keeps the "environmental cause" of Narcolepsy, still as a possibility. Didn't we already know that?

I guess I was just hoping to read this article and be presented with some new discovery about Narcolepsy, instead of just "mights" or "maybes".

Anywho, I guess it is an interesting read regardless. Here's the link to the article, for those of you who would like to check it out. Also, if any of you have opinions regarding this article, please leave a comment. I would like to know you thoughts.

Here's the link.... Narcolepsy May Be Caused By Environmental Exposures

This is my cool dog. Just thought you might wanna know.

On a different note...
Do any of you out there take or have you even taken Ambien, to aid in sleeping? I am taking it, off and on, and while it does make me fall asleep fast, I seem to have so much tension in my neck and jaw. I already have these problems, but it seems like it has been worse when taking the Ambien. Anyone have opinions, or info/experience with this?

Thanks all for reading, and I hope everyone has a great rest of the week!

Go Easy,
Ja:)

Your Limitations Are Not Weaknesses!

With me having Narcolepsy, one of the biggest struggles is accepting my limitations. At first, it was knowing what my limitations were. Now it is accepting them. In a world where most people have no idea what is going on with you, by having Narcolepsy, it makes it more difficult; for me anyway.

When you can't wake up, and are late to work. When you fall asleep while talking to someone on the phone. Things like this I am sure make it really hard for people without Narcolepsy to understand why these things happen.

Now, to be honest, some of these things that happen, I just do not have control over them. But some of them...I do. If I am not doing everything that I can to take the best care of myself, then these things can become worse.

Knowing your limitations, and adhering to them are two very different things!

Sometimes I will stay up way too late, because I feel awake and can do things that I want to do, and then, the next day, I pay the price.

Your limitations are not weaknesses. Everyone has limitations. You and only you know what your limitations are.

On the other side of the coin, Never let other people decide your limitations or capabilities.
There will always be people who will say you're not good enough, smart enough, healthy enough, etc. to accomplish your goals. Don't listen. Remember, you can accomplish anything you set your heart and mind to accomplish! Just do it in a way that doesn't exhaust your resources.

Know and adhere to your own limitations!

The Effects of Sleep Deprivation

Hola all!

Any of you feeling sleepy? Even if you do not have a medical condition that may contribute to poor quality sleep, or lack of sleep, sleep deprivation is so common in our fast paced, get it all done now, society.

Do you know how sleep deprivation can effect you? So many people don't realize just how important sleep is to your well-being. Fact is; you gotta sleep. You cannot survive without it. Here are some of the effects that sleep deprivation may have on you!

Sleep deprivation can cause:

Depression: This is common sense, isn't it? When you don't get sleep, you feel like crap. If you consistently don't get your Z's, you feel like crap everyday. And then, the grand prize for your efforts...Depression!

Heart Disease: Yes, it is true. Regular sleep deprivation can cause heart disease. Don't believe me? Look it up for yourself.

Difficulty with social relationships: This is another one that just is easy to figure out. When you are sleepy, you don't really feel like being the life of the party, or even thinking about any kind of party. With continued sleep deprivation, social relationships can become severely damaged. Isolation is just natural when you feel so tired. It is also common with depression too.

I am not trying to depress anyone reading this, so I will tell you, there is something that you can do!!

Relaxation techniques, pain management, exercise, and avoiding caffiene and alcohol are just some things that you can do for starters on your own. Sometimes though, these things are just not enough.

If doing your best to create the best sleep that you possible can does not prove to be successful, you may have an underlying condition causing a problem with your sleep. If at all possible, this is the best time to see your doctor, and discuss your symptoms to see if you may have a sleep disorder, or another condition effecting your sleep.

OK, people I know this may sound like some public service announcement, but it is really serious! For more interesting effects of sleep loss, check out these following articles. Some of them are amazing, and some are just plain scary!

Sleep Deprivation: Causes and Consequences

Sleep deprivation as bad as alcohol impairment, study suggests

Brain Activity is Visibly Altered Following Sleep Deprivation

Scientists Finding Out What Losing Sleep Does to a Body - This one is scary!

Ok, why are you still here? Go get some sleep!

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".

The Adventures of a Sleepy Woman...Who Happens to Have Narcolepsy.

Welcome!

My name is Ja, and I have Narcolepsy. It is my intention to create a blogspace that will inform you, assist you, and yes, maybe even humor you about all things Narcolepsy! Also, I wish to assist those who would like to learn more about other sleep disorders, and the myths and facts about sleep, itself. Many people think that Narcolepsy is a very rare disorder. Narcolepsy is not that rare.

Narcolepsy is an often unrecognized and under-diagnosed condition. It took 14 years and countless diagnoses for me to find that I did in fact have Narcolepsy. 

Living with a chronic illness is not an easy road!  The ups and downs of Narcolepsy can effect every area of one's life. By sharing my experiences and opinions, it is my hope to help people understand more about Narcolepsy from my own adventures, and to remind those who also have Narcolepsy that they are not alone! Thanks so much for visit my little corner of these interwebs!💟💕