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!!

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

This Sleepy Woman Hasn't Had Too Many Adventures Lately!

Hola everyone reading!

I haven't written in awhile, and I am sorry for that, if anyone was wanting to read here. My dog died Aug 10th, and it has been a little harder than I thought it would be. He was 14 years old, but very young acting! In the last year he got Diabetes and it was really hard on him. He also went blind (overnight) this year, but adapted so well, and did a great job finding his own way anywhere.

I loved him like family, and after having him for 14yrs, he was my little brother. He died in his sleep at the vet. They initially had to give him lots of phenobarbatal because he was having seisures that wouldn't stop. By the next day, he still was having them in his sleep and died.

I want to write here again, I have been reading a lot, but it was just hard to write anything without losing it. As many of you already know, stress really messes with your Narcolepsy too! I am hanging in there, and I hope that all of you are too. For any of you that pray, please pray for my family and the grief process. We are doing ok, but without God, I dont even want to think about where I would be!

Thanks Mucho!!

This is my dog Leo. :)

Alternative Treatments for Narcolepsy? Be Careful! Part B

Hola all.

My last post was about these websites that seem to be popping up all over the place and tout alternative therapies for treating, healing and yes even "eradicating" Narcolepsy altogether.

I started talking about one of these treatments called "Corsatax". Their website claims,

"Unlike other Narcolepsy products which are slow or ineffective, Corsatax has the unique ability to provide long term support in a relatively short time through an easy one-a-day pill regimen. In recent years there has been an increasing interest by medical researchers, practitioners and also the general public in natural plants and herbs as sources of medicine. All pharmaceutical companies are now finally admitting the fact that plants and herbs are by nature endowed with substances that have incredibly powerful healing powers."

I found their statement very general and not really informative about this one-a-day pill regimen. They list absolutely no links to studies performed on their product. In the ingredients section, they do list the "properties" of each herb used, but site no authority or mention where the heck they got the info.

As mentioned i my last post, I wrote them via web form at their site to request more info on and studies that may have been perform, and expressed my interest in trying the product. I have not at this point received any reply to my request. Surprise!

And here is where it becomes a real hot mess;

By doing a simple (ok, a little more than simple) search on some phrases they use on their website, this "company" seems to have more than 100 other websites almost completely identical to the "Corsatax" site. yep, there's:

Ongrotax: A unique Gonorrhea product
Sintatex: A unique Tinnitus product.
Lipratax: A unique Oral Leukoplakia product.
Meslarax: A unique Inclusion BodyMyositis product.
Glocatax: A unique Glaucoma product.
Dermatax: A unique Dermatomyositis product.
Gemlarax: A unique Polymyalgia Rheumatica product.
Nebralex: A unique Boils product.
Vomorax: A unique Cyclic Vomiting Syndrome product.
Kidnatrex: A unique Renal Failure product.
Myorex: A unique Cluster Headache product.
Cervorax: A unique Cervical Spine product.
Gravitax: A unique Myasthenia Gravis product.
Vegarax: A unique Graves' Disease product.

And about a kagillion more...(do these people have any conscience?) Do they just sit around making up names....?!?!?

Each website is almost complete identical other than the name of the product, and some of the ingredients. It's is a damn shame.

The "company", Botanical Sources, is supposedly in Italy, and I imagine it has a front yard full of unicorns, and rainbows with pots of gold at the ends. It may as well, because that address is nonexistent, or perhaps and PO box of some sort.

I am sorry to make this post so long, but there is more...Here is the HOT HOT mess section.

At the website "Rip-off Report", a site where consumers can publish complaints about purchases or fraudulent activity, There are a few interesting complaints about the lovely "Botanical Sources" co. Click here to read from the website, or here is a snippet of the complaints below;

From the site, a customer writes:
"I ordered an herbal product called Voltarax from this company not knowing they were located in Italy.My order took almost a month to reach me. When it did arrive I noticed it was mailed from Pakistan. The packaging does indicate that it was made in Pakistan. Had I known upfront that I was ordering a supplement that was made in and mailed from Pakistan I would not have ordred.
Botanical Sources is using a company CCnow as a 'retailer' in the US to process payment information. Buyer beware."

And...
"This web site preys on people looking for natural cataract relieve. It almost seems like a legitimate site until you look for a telephone number to ask questions and there is none. Their address in Italy does not exist. The web page does have a false area to submit your name, e-mail address and phone number stating that they will get back to you immediately. Of course they never will. It claims of natural herbs from India known to heal cataracts. The frauds call their product Secarx."

Well, I guess I am the bearer of bad news. I wish that they were legit. I knew they weren't, as most of you did too. We have to be careful! Always check with other before wasting your hard earned bucks on crap like this. I just wish I could figure out how to take them down!!!!!

What do you all think about this crappalicious crap!!!????? Let me know, maybe we can get the word out, or form a coalition to get these meanies together and .....and pinch them really hard ...or something....maybe make them take one of our natural remedies...called Crappheadtax. Kinda catchy, huh...

:)