Hey everybody! Holla if you hear me!
Time for a revival up in here!
Time for a revival up in here!
May 31, 2019
March 4, 2015
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.
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.
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...
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.
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:
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?
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.
------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...
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.
April 7, 2010
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
October 28, 2009
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. :)
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. :)
July 29, 2009
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...
:)
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...
:)
July 19, 2009
Alternative Treatments for Narcolepsy? Be Careful! Part Uno
(This is kind of a long post, but I hope it may be of great use to some of you out there! I certainly am interested in knowing all I can:)
I don't know anyone that wouldn't be ecstatic to find a natural way to make Narcolepsy go away or even something that would help reduce Narcolepsy's symptoms. I know I am one of those willing to try any safe natural treatment. Hey, If it doesn't work for me, no real loss, right? At least it would be a learning experience. And, as the saying goes, what works for some, may not work for others. (I think that is a saying...but oops, if it is not)
Those who know me know I am a researcher. I look for news everyday, regarding new information about Narcolepsy, and read way to much, most of which is written in a language that I understand, at best, only a bit, due to the medical terminology. (Why didn't I become a doctor or geneticist...:)
So with that being, I have always noticed some "natural cures" that pop up on the web from time to time claiming that Narcolepsy is over, done been cured, that is, with the help of their well studied, miraculous mixture of herbs, that completely kick Narcolepsy in the butt! Yeah, right...
I have tried to find information about the companies that have these websites that are strangely similar in many ways. I have tried to find out if anyone has tried any of them....can't find a soul, except for the testimonials of those on the products website. So, as much as I had ever wanted to just try them, my conscience just cannot allow me to. Below I gathered some info from each of these sites for your viewing. I also have written to two of them, which I have below as well.
My personal comments are in RED so it doesn't get confusing. Here it tis...oh ps. I didn't list the website addresses. A quick Google, and you'll find them fast if needed.
Treatment name: Corsatax
Claim from their website: "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."...uh....this statement actually has nothing to do with their unique product! duh.
Cost: 60 tabs=65.00 90 tabs=95.00
Guarantee: "After placing your order, if you believe for any reason that Corsatax is not suitable for you or you do not find it meeting your health expectations, you have nothing to worry about. All you have to do is to send us back the unused portion (or the empty bottles if you have used the whole product) and all amount that you have paid us would be refunded immediately without any delay. It is completely up to you if you want to give a reason as you will not be asked for any. This guarantee is valid for 60 days from the date of purchase, thus allowing enough time for delivery to your door and to experience results."
Company: Botanical Sources Via Canova 24, Suite # NR 320 Roma 00186 Italy Ok, they have a guarantee, sound to good to be true? Me thinks so... They provide NO studies done on the product, but they do provide links to studies about natural plants being useful in medicine, as if they think the average person doesn't know that that has already been known since the beginning of time. errrrr... Since they provide no evidence or real info about their product, I used their contact form to write them this letter:
I don't know anyone that wouldn't be ecstatic to find a natural way to make Narcolepsy go away or even something that would help reduce Narcolepsy's symptoms. I know I am one of those willing to try any safe natural treatment. Hey, If it doesn't work for me, no real loss, right? At least it would be a learning experience. And, as the saying goes, what works for some, may not work for others. (I think that is a saying...but oops, if it is not)
Those who know me know I am a researcher. I look for news everyday, regarding new information about Narcolepsy, and read way to much, most of which is written in a language that I understand, at best, only a bit, due to the medical terminology. (Why didn't I become a doctor or geneticist...:)
So with that being, I have always noticed some "natural cures" that pop up on the web from time to time claiming that Narcolepsy is over, done been cured, that is, with the help of their well studied, miraculous mixture of herbs, that completely kick Narcolepsy in the butt! Yeah, right...
I have tried to find information about the companies that have these websites that are strangely similar in many ways. I have tried to find out if anyone has tried any of them....can't find a soul, except for the testimonials of those on the products website. So, as much as I had ever wanted to just try them, my conscience just cannot allow me to. Below I gathered some info from each of these sites for your viewing. I also have written to two of them, which I have below as well.
My personal comments are in RED so it doesn't get confusing. Here it tis...oh ps. I didn't list the website addresses. A quick Google, and you'll find them fast if needed.
Treatment name: Corsatax
Claim from their website: "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."...uh....this statement actually has nothing to do with their unique product! duh.
Cost: 60 tabs=65.00 90 tabs=95.00
Guarantee: "After placing your order, if you believe for any reason that Corsatax is not suitable for you or you do not find it meeting your health expectations, you have nothing to worry about. All you have to do is to send us back the unused portion (or the empty bottles if you have used the whole product) and all amount that you have paid us would be refunded immediately without any delay. It is completely up to you if you want to give a reason as you will not be asked for any. This guarantee is valid for 60 days from the date of purchase, thus allowing enough time for delivery to your door and to experience results."
Company: Botanical Sources Via Canova 24, Suite # NR 320 Roma 00186 Italy Ok, they have a guarantee, sound to good to be true? Me thinks so... They provide NO studies done on the product, but they do provide links to studies about natural plants being useful in medicine, as if they think the average person doesn't know that that has already been known since the beginning of time. errrrr... Since they provide no evidence or real info about their product, I used their contact form to write them this letter:
I wrote:
"Hello, I am interested in learning more about your treatment. Are there any specific studies that have been done using Corsatax? I am eager to read these type of studies, published or private. I look forward to hearing from you. Thank You."
I will update with any additional info I receive. I hope they get back with me with great proof, I really do. But my realistic mind tells me they won't. I hope I am wrong. Until then, I would advise anyone not to jump into this one. You may never get your money back and they list no proof of their product working, with the exception of their overly generic testimonials. Darn!
UPDATE: As of April 15, 2010, I have not heard anything from this company...Surprise!
If anyone out there has tried this product, I would love love love, did I mention, Love to hear from you. I have always wanted just to try it and see what happens, but I just don't have the money to take that chance.
Oh, I have broken this post down, so my next post will be about another company similiar to this one, with another product aimed toward knocking Narcolepsy on it's proverbial butt. :) Thanks everyone for reading my posts. I love ya all!
June 26, 2009
Genetics Traits, and the Most Genetically Annotated Human on Earth!
Click here for one of the most interesting articles on how genetic traits can be analyzed. This author of the article has had 5094 traits analyzed! A world record, and an amazing story.
May 26, 2009
Narcolepsy - poetry
I woke up this morning
"2:43" said the blazing red lights
About four hours before my alarm
Usually goes off and slaps me awake...
I woke up this morning
Sat straight up in my bed
All bright-eyed and bushy-tailed like they say,
Rubbed my crunchy eyes and stared out my window
And into the slow blackness of night...
Still and cold and deathly quiet
Nothing moved, not even the trees,
Not even the clouds,
It was as if time had stopped, and I
Was the only one left behind, and it felt like
"The ship leaves in five minutes"
And I had slept through it all-- the megaphones, the shouts,
Even the sirens in the distance,
I missed the exodus, the passage
Again...
But when I woke up this morning
I put on my suede slippers,
You know them, the fuzzy ones that makes me shoot sparks
And I shuffled off into the dark kitchen
Wondering if I had lost something there
Like cold pizza from the night before...
Casting shadows from the refrigerator
I was hungry but did not eat
I was thirsty but did not drink
I was tired but did not sleep
Because somewhere I swore I heard you laugh...
At least I thought I heard you laugh,
Like fat stormy raindrops on my window pane,
Like blue-white snowflakes pushing February away,
Like a bamboo windchime with its wires tangled...
I woke up this morning
Wishing I could fall back to sleep,
Because my dream made no sense
And there was no one there I could tell it to...
©2006-2009 @rapidograph
"2:43" said the blazing red lights
About four hours before my alarm
Usually goes off and slaps me awake...
I woke up this morning
Sat straight up in my bed
All bright-eyed and bushy-tailed like they say,
Rubbed my crunchy eyes and stared out my window
And into the slow blackness of night...
Still and cold and deathly quiet
Nothing moved, not even the trees,
Not even the clouds,
It was as if time had stopped, and I
Was the only one left behind, and it felt like
"The ship leaves in five minutes"
And I had slept through it all-- the megaphones, the shouts,
Even the sirens in the distance,
I missed the exodus, the passage
Again...
But when I woke up this morning
I put on my suede slippers,
You know them, the fuzzy ones that makes me shoot sparks
And I shuffled off into the dark kitchen
Wondering if I had lost something there
Like cold pizza from the night before...
Casting shadows from the refrigerator
I was hungry but did not eat
I was thirsty but did not drink
I was tired but did not sleep
Because somewhere I swore I heard you laugh...
At least I thought I heard you laugh,
Like fat stormy raindrops on my window pane,
Like blue-white snowflakes pushing February away,
Like a bamboo windchime with its wires tangled...
I woke up this morning
Wishing I could fall back to sleep,
Because my dream made no sense
And there was no one there I could tell it to...
©2006-2009 @rapidograph
May 24, 2009
Wakey Wakey! People with Narcolepsy
Hey peeps.
I just got a email from a friend, Chris"Toph4er" reminding me about one of the greatest forums ever. He does a hella job over there at "People with Narcolepsy" so I wanted to mention it here. It may be a forum that you have never checked out yet. The people over there are friendly and love new folks stopping by.
If you like to do the forum thing, this is a great forum to check out. Click here to go check it!
I hope everyone is doing well. And how about that proof about Narcolepsy being an autoimmune disorder! I was really excited to read that, but now I am just crazy to know what that really means for us. Anyone havve any ideas?
I just got a email from a friend, Chris"Toph4er" reminding me about one of the greatest forums ever. He does a hella job over there at "People with Narcolepsy" so I wanted to mention it here. It may be a forum that you have never checked out yet. The people over there are friendly and love new folks stopping by.
If you like to do the forum thing, this is a great forum to check out. Click here to go check it!
I hope everyone is doing well. And how about that proof about Narcolepsy being an autoimmune disorder! I was really excited to read that, but now I am just crazy to know what that really means for us. Anyone havve any ideas?
April 10, 2009
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!!
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!!
February 15, 2009
Helloooo! Check Out This Great Narcolepsy Blog Site!
Good day everyone! I remember a couple of months ago looking at a site that different people had posted some things in a blog type format, about having Narcolepsy. I just checked It out again, and it has a lot more entries from many different perspectives! On the site it states;
"If you've got something to say about sleep disorders
you can say it here. Prose, poetry, photography;
whatever form of expression suits you
best (within reason). Please email your contribution
to (email is listed at the actual site) with the
subject line "We are not lazy". Please include
best (within reason). Please email your contribution
to (email is listed at the actual site) with the
subject line "We are not lazy". Please include
your name (or a pseudonym), age and location."
Even If you don't want to add to this really cool blog, make sure you at least go check them out!! It is really nice to be able to read about how other people feel, and what they think about Narcolepsy. Just CLICK HERE or up at the title of this entry to check out the blog called "We are not lazy".
Hope you all had a great weekend!
December 17, 2008
Going Gray Early? Is There a Link to Narcolepsy?
Narcolepsy is such a mystery. Some people think that it is an autoimmune disease. Check out this article about the connection between autoimmune diseases and having gray hair before the age of 30. Did any of you peeps with Narcolepsy go gray early? Here's the link, let me know what you think, ok?
Gray Hair Before Age 30 May Mean Health Risks...
Have a great day!:)
Gray Hair Before Age 30 May Mean Health Risks...
Have a great day!:)
October 16, 2008
Long Term Effects of Narcolepsy - What Do You Think?
I have seen many articles lately about Narcolepsy, and it's symptoms and general information regarding this illness. One of the interesting things, to me anyway, are the differences in opinions about Narcolepsy and how it effects it's target. I have collected some opinions from various websites, and posted them below, with links, to see what you think.
Do any of these explanations seem accurate in your life? How does Narcolepsy effect you? I am so interested in the opinions of others on how Narcolepsy has changed your life. What is different since you have been effected by Narcolepsy?
Here are some snippets from various sites on the subject. The link to the actual website is included. Let me know what you think, OK?
Long Term Effects of Narcolepsy
From the website of Narcolepsy Network - Click here to go to site.
...The consequences of narcolepsy may be many and far reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and efforts to avoid emotions may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed...
----------
The following text excerpts taken from SleepFoundation.org - Click here for the exact page
...The symptoms of (and some of the drugs taken for) narcolepsy may affect your sex life. Sexual problems, such as low sex drive and impotency, may result from severe sleepiness, depression, medications or cataplectic attacks. These problems, especially any resulting from a new medication or changed dosage, should be discussed with your doctor....
...Narcolepsy symptoms can also result in a change or loss of employment, physical restrictions and social withdrawal. Loss of self-esteem, learning difficulties and depression can result...
----------
Below are a few words from the Aurora Health Care site, from an article intitled "In his own words: living with narcolepsy". The whole article is good. You can check it out, click here.
...I've had to make many lifestyle changes. I had to give up my military career and change jobs. I only swim in shallow water. I'm still a heavy coffee drinker, just not three pots a day. I take regular naps, generally after lunch, around 4, and after supper. I can regulate when I need a nap. And by taking naps, I don't have to take as much medication. Since emotions can trigger cataplexy, I have to walk away from confrontational situations or I may fall over...
----------
At the website of Health Central, here is what they have to say about the emotional and social effects of Narcolepsy. Click here to go to the website.
...The patient suffers emotional and social difficulties from the uncontrollable sleep episodes and cataplexy. Studies have reported rates of depression in people with narcolepsy ranging from 30 - 57%. (In the general population, prevalence of depression is 8%.) Studies have shown severe emotional and social dysfunction in all areas, including work, relationships, and leisure activities. One study reported that 25% of men with narcolepsy suffered sexual problems. Some experts believe that the psychological and social effects are more serious than those caused by epilepsy (which narcolepsy can be mistaken for)....
There are many opinions about the effects of Narcolepsy on one's life. We all have our own unique experiences and opinions. How does it effect your life? What area in your life that is effected by Narcolepsy do you find the most difficult to deal with?
I am really interested in hearing different experiences, and I would like to post some of them here, with your permission.
Well, everyone, have a great rest of the week, and oh yeah, have any of you seen the film "90 Naps a Day" yet? I got some interesting opinions from some of you who have seen it, and I hope to write a little about it soon. I haven't seen it yet, I am in the U.S, and I haven't found a way to see it, I have only been able to see some clips.
Do any of these explanations seem accurate in your life? How does Narcolepsy effect you? I am so interested in the opinions of others on how Narcolepsy has changed your life. What is different since you have been effected by Narcolepsy?
Here are some snippets from various sites on the subject. The link to the actual website is included. Let me know what you think, OK?
Long Term Effects of Narcolepsy
From the website of Narcolepsy Network - Click here to go to site.
...The consequences of narcolepsy may be many and far reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and efforts to avoid emotions may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed...
----------
The following text excerpts taken from SleepFoundation.org - Click here for the exact page
...The symptoms of (and some of the drugs taken for) narcolepsy may affect your sex life. Sexual problems, such as low sex drive and impotency, may result from severe sleepiness, depression, medications or cataplectic attacks. These problems, especially any resulting from a new medication or changed dosage, should be discussed with your doctor....
...Narcolepsy symptoms can also result in a change or loss of employment, physical restrictions and social withdrawal. Loss of self-esteem, learning difficulties and depression can result...
----------
Below are a few words from the Aurora Health Care site, from an article intitled "In his own words: living with narcolepsy". The whole article is good. You can check it out, click here.
...I've had to make many lifestyle changes. I had to give up my military career and change jobs. I only swim in shallow water. I'm still a heavy coffee drinker, just not three pots a day. I take regular naps, generally after lunch, around 4, and after supper. I can regulate when I need a nap. And by taking naps, I don't have to take as much medication. Since emotions can trigger cataplexy, I have to walk away from confrontational situations or I may fall over...
----------
At the website of Health Central, here is what they have to say about the emotional and social effects of Narcolepsy. Click here to go to the website.
...The patient suffers emotional and social difficulties from the uncontrollable sleep episodes and cataplexy. Studies have reported rates of depression in people with narcolepsy ranging from 30 - 57%. (In the general population, prevalence of depression is 8%.) Studies have shown severe emotional and social dysfunction in all areas, including work, relationships, and leisure activities. One study reported that 25% of men with narcolepsy suffered sexual problems. Some experts believe that the psychological and social effects are more serious than those caused by epilepsy (which narcolepsy can be mistaken for)....
There are many opinions about the effects of Narcolepsy on one's life. We all have our own unique experiences and opinions. How does it effect your life? What area in your life that is effected by Narcolepsy do you find the most difficult to deal with?
I am really interested in hearing different experiences, and I would like to post some of them here, with your permission.
Well, everyone, have a great rest of the week, and oh yeah, have any of you seen the film "90 Naps a Day" yet? I got some interesting opinions from some of you who have seen it, and I hope to write a little about it soon. I haven't seen it yet, I am in the U.S, and I haven't found a way to see it, I have only been able to see some clips.
October 2, 2008
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!!!
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!!!September 19, 2008
Upside Down Rainbows, in the midst of mayhem...
WOW...
These past few weeks have been filled with mayhem, craziness, and odd happenings. So many things that have happened in the world lately have been devastating. From natural disaster to tainted products in China, hurting so many people. Please, don't forget, if you are a prayer-er (highly recommended here:)) to keep all of these people in your prayers, thoughts, and actions.
While reading the news today, I came upon, yet, another strange incident, but this time, it was beautiful, and a winner!
In the UK, Cambridge to be exact, a upside down rainbow was spotted, and captured by photo. Take a peek at the story here. Click here for the story and picture.
Wow. One commenter on the story mentioned "It looks like God's smile!". It is a beautiful thing.
Thanks God! I am sure that it really helped some people today. When I take the time to look at the beauty of nature, it seems to always put things back into perspective. I am so blessed. I thank God today for his mercy, and kindness he has given me. Again, I am so blessed.
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