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.  :)

Does Narcolepsy Make You Post to Your Blog Less??

Hola!

I have really been trying to write in this blog on a regular basis. I am guessing that it is quite apparent that I have not been doing such a fantastic job at it :(

My little cutie dog got sick, and it has been tough to deal with, but I am sure It might be most difficult for him. He went completed blind literally overnight. When we got to the vet explained it could be a illness caused SARD where pet go blind rapidly, without know why. Then, that same week he was diagnosed with Diabetes. After that, all sign are pointing to another additional diagnosis of Cushings disease.

My poor little guys has really been through some difficult times lately. If anyone gets a moment, would you please say a prayer for him? Thank you in advance!!

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!!!

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:)

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".