February 3, 2014

Narcolepy, Truth and Consequences with a Side of Depression.

Today I've been thinking about what to write about here, and I have a few things I'd like to share.  I used to try to read, and research everything possible regarding Narcolepsy.  New treatments, New discoveries and anything new about Narcolepsy was on mind more than anything.  

This blog started out as a way to share what I learned along the way.  So, today I would like to share some things that I didn't really understand before.  They didn't require research, they required time; time to grow, and learn more about this Narcolepsy, just by living with it.

First what I know is this; even though I have been diagnosed for about 11 years, I still sometimes get to a place where I feel like people that are close to me disregard my illness or act like it is not a big deal.  It seems as if they expect things from me that are things that I may not be able to do. 

 Instead of being straight forward and reminding them in a direct and honest way that I can't do whatever it is at that time that they ask of me, I take the selfish route and begin my passive aggressive routine.  I except the task and complain to myself about how mad I am that they would even ask me do whatever it is in the first place.  Then comes the pity "celebration" about how no one cares about me, they don't believe my illness is real, they don't appreciate anything I do...and so on.  They even will ask me to drive somewhere when I feel sleepy!!  They don't care!!  And then like magical clockwork depression show up to make it worse...Thanks depression!

Here's what know is true; I am the one in control of my actions.  If I  know that I am not able to do what is required at that time, it is my duty to tell them that.  Yes, they know I have Narcolepsy, but unless I let them know how I feel, they will never know.  If I just do what they ask of me, when I don't feel that I can, or if it is not safe for me to drive, I am the only one to blame if I do it anyway, without letting them know that I shouldn't do it.

So, in a nutshell...tell people how you feel.  Do the best that you can, and if you can't do something, let them know that you can't.  It is so very simple, yet sometimes we make everything so much more difficult! Truth is, that there may be people the really don't care about how you feel.  But in my situation, most of the time, those type of thoughts are created only by me, and my actions. 

 I do have a lot of people that care greatly about me.  There are some that don't and yes, it hurts me to the core at times.  I am still so grateful for those that do care.  I am blessed.  Sometimes we need to check ourselves!  We need to give people more information and more chances.  We really have absolutely nothing to lose.

July 5, 2010

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!!


June 24, 2010

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.  :)

May 26, 2010

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:)

April 10, 2010

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.