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Message board for narcoleptics, friends and family. Ask/answer questions...or just get it off your chest.

spin off

by phil (no login)

http://www.reuters.com/article/healthNews/idUSTRE5246GM20090305

By Michael Kahn

LONDON (Reuters) - Two studies published on Thursday provide evidence that common viruses may cause childhood diabetes, paving the way for potential vaccines against the life-threatening condition, researchers said.

One team showed that enteroviruses -- which normally cause colds, vomiting or diarrhea -- were found frequently in the pancreases of young people who had recently died from type 1 diabetes, sometimes called juvenile diabetes, but not in healthy samples.

This suggests a virus could trigger the disease in children genetically predisposed to the condition, which affects an estimated 440,000 people worldwide, said Alan Foulis of the Royal Infirmary in Glasgow, who worked on one of the studies.

"The story that is emerging is there is a virus infection that precedes the onset of autoimmunity," he told a news conference. "There is a thought that we are looking at the culprit."

Type 1 diabetes is caused by the destruction of beta cells of the pancreas that produce the insulin necessary to regulate blood sugar levels. The autoimmune disease is different from the far more common type 2 diabetes, which is strongly associated with obesity.

Genetics play a role in diabetes but researchers know other factors such as diet are also important, with viruses long suspected as a possible trigger, researchers said.

Foulis and colleagues examined 73 pancreas samples of young people who had died from diabetes and found that 60 percent of the donated organs contained evidence of enteroviral infection of beta cells.

By contrast, the researchers hardly ever saw infected beta cells in tissue samples taken from 50 children without diabetes, they reported in the journal Diabetologia.

They also found a large proportion of these infected cells in adults with the more common type 2 diabetes, suggesting that viruses may also trigger this form of the disease in some people.

A second study from Cambridge University researchers found that rare genetic mutations in a gene involved with the body's response to viruses reduce the risk of juvenile diabetes.

They looked at 480 young people with type 1 diabetes and another 480 healthy people to identify the gene and the variants involved.

"We have pinpointed a specific gene, which acts as a warning report for virus infection," John Todd, a Cambridge University researcher, who worked on a study published in the journal Science. "Not only have we found a specific gene but this gene also has an intriguing function in dealing with virus infection."

While Todd cautioned that many environmental factors besides viruses could contribute to type 1 diabetes, Foulis and his team said they wanted to whittle down the some 100 enteroviruses to find which ones played the main roles.

Doing this, and better understanding of how cells respond to viral infection, are steps toward a vaccine that could one day protect children against diabetes, Foulis said.

"The aim would be for a vaccine that would prevent many cases of type 1 diabetes," he added.



Posted on Mar 21, 2009, 12:46 AM

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also

by phil (no login)

if the following is also true of the virus that may cause diabetes then it would explain the 45th parallel thing


http://www.webmd.com/cold-and-flu/news/20080303/why-flu-virus-thrives-in-winter

Cold Temperatures Pave the Way for Influenza Virus to Spread
By Miranda Hitti
WebMD Health NewsReviewed by Louise Chang, MDMarch 3, 2008 -- Scientists may have found a chink in the armor of the flu virus. Their discovery may lead to new flu treatments.

Researchers today reported that in winter, even the flu virus wears a coat, and it's a coat that helps the virus spread through the air. Tinkering with that coat might disarm the flu virus.

"Now that we understand how the flu virus protects itself so that it can spread form person to person, we can work on ways to interfere with that protective mechanism," Duane Alexander, MD, director of the National Institute on Child Health and Human Development, says in a news release.

Here's a quick look at the new findings on the influenza virus.

Scientists found that in cold temperatures, the flu virus forms a hard coating that acts like an envelope, helping the virus spread through cold air and then melting inside people to do its dirty work.

"Like an M&M in your mouth, the protective covering melts when it enters the respiratory tract," Joshua Zimmerberg, PhD, chief of the cellular and molecular biophysics lab at the National Institute of Child Health and Human Development (NICHD) says in a news release. "It's only in this liquid phase that the virus is capable of entering a cell to infect it."

In warmer temperatures, that coating doesn't form. So it's harder for the influenza virus to spread through warm air.

Zimmerberg and colleagues report their findings in today's advance online edition of Nature Chemical Biology.


Posted on Mar 21, 2009, 1:07 AM

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Re: also

by (Login patlittlejohn)
Moderators

i believe they will connect some virus to other autoimmune diseases and some of what we thought was understood.

tricky to control, medicine has been using and researching antibiotics for half a century, knowing that was not going to approach cancers, diabetes or AIDS.

Posted on Mar 21, 2009, 9:21 AM

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Attitudes

by (no login)

Our loved ones deserve special consideration. How many of us would pick a lifetime partner that have the symptoms and problems that come with Narcolepsy? with beforehand knowledge? And they still cant understand it. They may backslide, but they are there for us, as often as possible.

As far as other critics. What they may say is hurtful, only if you let it. My position is to smile and let the comments slide down my back. We should only except criticism from the experts. The only experts are those who have experienced N. If you think I am wrong, then please tell me.

Posted on Mar 19, 2009, 7:45 AM

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Re: Attitudes

by (no login)

I definitely agree. My husband and I got together around the time that my symptoms really started showing up (17-18) and he still stuck around after dealing with all those years of it! 6 years now :) He's awesome. haha

As for other people, I can really imagine it must suck to get negative attitudes. The only people I have ever really gotten anything from post-diagnosis is my mother and brothers. My dad and everyone else don't really say anything if it's not supportive and helpful. I count myself truly lucky. I could have it much worse off, especially being that I am very sensitive. My brothers backed off, especially when the youngest caused a C attack by flicking me in the forehead lol he was so freaked out if I could have laughed I would have. My mom still has her moments but sometimes she seems like she gets it, but then the next day she's back to square one. Oh well. Like I said, it definitely could be worse.

Posted on Mar 19, 2009, 9:41 AM

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you're dead right, GEM

by (Login patlittlejohn)
Moderators

It starts that whole "for better or for worse" tap dance in my head, but

I have to give Jim credit, he knew ahead of time.

Bless his sweet heart, he said "Cling to me".

Posted on Mar 19, 2009, 1:58 PM

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Re: Attitudes

by (no login)

My husband and I did not know. I was a stay at home mom so I handled everything like wonderwoman. I guess because I was home my schedule was exetremely flexible. I was always a rather tired person.It wasn't until I starting working 5 years ago that the sleepiness became prevelant. As far as the cataplexy went I always thought it was normal to feel extremely weak with laughter. I would often fall chasing my children when mad or happy sometimes.

I work in a Nursing Office and unfortunately my supervisors do not understand why I am not 100% because after all I am on stimulants. They think if I didn't nap I would sleep at night.No matter how much I have explained it - it falls on deaf ears!

My husband gets it sometimes and other times he is totally frustrated with it. since my trips in and out of the ER last month and the 2 eeg's I've had this month he is much more understanding. If he could take time off of work he would love to come to the neuro's office but sadly with the neuro office being so far away from his job site it's not possible right now.

Doctors who don't understand N are the worst. The last endocrinologist I went to told me none of my issues were thyroid they were either depression,anxiety or mental illness! My neuro was as offended as I was!

So for the folks who don't get it PLHHHHHHH~~~~ on you - the old philosophy what comes around goes around comes to my mind!

Posted on Mar 20, 2009, 6:10 AM

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sleepy picnic reunion

by (no login)

Five days and counting. Pat, I'm so looking forward to our reunion Tuesday. Just think a whole week! Not only do I finally have that Mayo Clinic appointment, which I'm totally looking forward too and praying I have some viable options to get rid of this mid back pain, but a possibility of seeing a sleep doctor there, maybe the one Amy sees. The back side to all this is that Mayo is NOT a Medicare Provider, they charge 15% over what is allowable by Medicare and you are responsible for that. I have pretty good supplemental insurance and I hope they will pick up a good portion of it, otherwise they may boot me out the door, which is our life story when on SSDI. I also find many doctors seem to sweep you under the rug when you get to that magic golden age. JUST LIVE WITH IT! Right now I'm feeling pretty lucky, before Obama really screws up our health care system.

Posted on Mar 19, 2009, 5:03 AM

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yay

by (Login patlittlejohn)
Moderators

you just KNOW i am getting ready, and tamping down my excitement as much as i can.

hoping this is your window of opportunity for both your back and N/C, and as for being swept under the rug,

"now that we are really too OLD to consider quality of life for our future!!!"

i hope when they meet you and see how fine a lady you are, they wont think like that.

Besides healthcare in AZ is so often for people over 50, and it is all about having another GOOD 50 years.



Posted on Mar 19, 2009, 6:48 AM

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For your kind consideration:

by (Login patlittlejohn)
Moderators

Hi Sleepy Gang,

I have a committed interest in what Amy is doing, making a documentary as you know. it seemed it would be easy to "introduce" Amy to some of us here on the forum, who have been my closest narcolepsy contacts for more than 5 years.

it occurs to me that remembering us and what we deal with in this matter... is like being a paraplegic and "just" wanting to get to the post office; I would have to crawl there! my muddled mind and patchy memory are just not doing the job.

anyone who thinks this is way too much info to just post out in the open, not a problem. Amy said from the beginning she would not compromise anyone's privacy, and the purposes of this board are still the same: safe, supportive, informative and a place to just get stuff off our chest.

If you are interested, post here:

1. How old are you?

2. what age were you first really troubled by symptoms of n and c?

3. what are your top 10 symptoms (go down from the most disabling) as you live with them day to day?

4. what work do you do? or did you do?

5. city/state?

6. family situation?

7. family history? (not just history of n)

8. milestones and events, good and bad?

9. if there was one thing you wanted to be known about your life as a person with narcolepsy, what fact is that?

10. is there another thing you want known? let 'er rip.



thank you! you're the best














Posted on Mar 20, 2009, 7:54 AM

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re: For your kind consideration

by (no login)

You definately can count me in, no matter what. I would shout it from the roof tops about N if it would educate just one person. I'm just so tired of the stigma associated with N, I just want everyone to understand what it is that we go through on a daily basis. I know there are much worse things in life and we are not going to die tomorrow because of our disorder (unless we fall asleep at the wheel, or fall and hit our head during a cataplexy attack) but none the less it is a chronic disorder that seriously changes our lives, our spouses, our parents and our childrens lives.

I am 59 until Apr 7 that is.

I was about 17 when I look back now. Falling asleep in class, unable to concentrate, AB, memory loss, motivation decreased, dropping classes because of always being tired, unable to stay on task at hand. I've been told of some falling down during laughing episodes that I really don't remember myself at that age. I always thought my cataplexy came on much later. For so many years I thought it was all normal behavior, other people fell asleep in class as well, took naps after a meal or a day that included alot of physical activity. This is where I think our inate human behavior kicks in, because as we slowly change so does our behavior. It is so gradual sometimes that its like having a mild cataplexy attack in front of people, who would never notice something is going on, but ofcourse you do, your head bobs, your eyes open and shut, your knees give way only for a second. Our superior human brain in this animal kingdom lets us adapt to circumstances without really thinking about it. Caffeine makes me tired, I don't drink coffee or caffenated drinks, foods high in carbs makes me sleepy, so I eat foods higher in protein. We adapt like a lab rat, simply by trial and error. It's really hard for me to pin point an age that the symptoms really became a problem, because going undiagnosed for 35 years and thinking things were normal for me I had nothing to compare to. I think at that time and family began to really notice my behavior and when watching my grandchildren and falling asleep as they have the run of the house unsupervised, it became a safety issue with some family members and forced me to accept that my behavior was not normal. As I age and my symptoms have worsened in the last 10 years, it becomes a hazzard for me, when falling to the ground during a cataplexy attack.

Top ten symptoms: All are troublesome, but cataplexy and the social aspects of N are the worst. Social aspects take on a wide range of other problems, self esteem, being a productive person, exercise, socializing with people at social gatherings, just plain participating in every day life. Automatic behavior, memory loss, lack of concentration, cognative thinking, staying on task, fatigue, fragmented sleep, HH and sleep paralysis. I've gotten so used to HH and sleep paralysis that it doesn't bother me as much any more. My brain has gotten used to using coping mechanizms like floating or more of an out of body experience that they're not so scary any more.

I am retired on SSDI. Like most narcoleptics I had some frequent job changes thinking the next job would be more suited for me. When people begin to look at you like some lazy, non productive person and begin to make comments about your sleep behavior, like you aren't able to hold up your end of the job, then when things get really bad, you simpley quit the job and get another. When all along you are probably working harder to prove yourself to your employer. I've worked as a loan officer at a bank and credit union, a merchandising manager for a nation retail chain, a CNA then LPN for a hospital in ER and minor care. I had big dreams like most of us, I wanted to be a research physician in the field of genetics, maybe if I had worked harder, had more determination, wasn't a women in the sixties, maybe I could have overcome some of the self esteem problems I had, but didn't know I had. Hind sight is always 20/20.

I was born in Kansas, grew up and lived in Portland, Oregon 35 years, moved to Lewiston, Idaho and now winter in SW Arizona.

It is just my husband and I and our home on wheels. Our children are grown, married and have children of their own.

As far as I know, talking with my mother and other older family members, no one else had a sleep problem, unless it was something they just didn't want to talk about. My mother is a insomniac has some problems occasionally with sleep paralysis. Pretty healthy for an 83 year old. Has arthritis pretty bad. My father is deceased from melanoma and connective tissue sarcoma. Allergies run in about every member of my family for generations as well as asthma. I have a daughter with MS, one with narcolepsy w/o cataplexy and a daughter that also has some episodes from time to time with sleep paralysis. Most of our problems seem to be all autoimmune no other chronic diseases, like diabetes, well some mild heart problems and high blood pressure seem to persist.

I think that God has blessed me in so many ways throughout my life. I guess I have probably handled the hand I've been dealt, pretty well most of my life. I have managed to work 35 years w/o meds. I think God looks out for those of us that are ignorant but no due to stupidity. I've always had to work harder than many of my associates and have risen to some pretty well paying positions. I've raised my children to be kind and understanding, caring people and to help those with disabilities and treat them with equal respect. Sometimes I think I am too hard on myself, when I can't measure up to what is expected, but I do try to do my best at whatever I do. I hate going down to defeat.

The one thing to be known for as a person with narcolepsy. mmmmmmmmmmmmmmm..................... this is a tough question. Never giving up on anything, don't sell yourself short, dispite your disability. Keep getting up by your boot straps and do the best you can. Take what God has given to all of us and use it to help others. We need to educated people about our disorder, reach out to our schools, public health departments, so children can get dx before they are 50 years old and before their life has passed them by. It may be to late for my dreams to come true, but those much younger could have a very different out come as far as their education and service to their communities are concerned. I am thankful that I have had a successful marriage and three beautiful girls, now women and mothers and successful in their careers. My daughter 40, is a 1st grade teacher, deals with ms has four girls, one adopted with alchol syndrome for the past 13 years, she is going to Mexico with her husband and other church members for the sixth year to build a couple of houses in southern Mexico. I ask your prayers, because Mexico right now is a very dangerous place. I do believe we all have purpose in our life and we have to follow what our hearts and God tell us to do.

Posted on Mar 20, 2009, 2:23 PM

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Re: For your kind consideration:

by (no login)

1. How old are you?
I will be 24 this summer.
2. what age were you first really troubled by symptoms of n and c?
I think it was around 17 that I really started noticing, but I had trouble with my sleep/wake cycle as long as I can remember. My mom knew this and just thought I was lazy or something-- never sought help for me. It was my last year of high school when the trouble staying awake in class happened, I remember I fell asleep for the first time in a history class, I startled myself when I realized I had done it, never had before!

3. what are your top 10 symptoms (go down from the most disabling) as you live with them day to day?
The weakness I get from being tired or having anxiety is a problem, I pretty much look like I'm drunk-- I slur, I can't walk, I really just have to sleep it off. The cataplexy is what has made it hard to work and maintain school. I used to manage the sleepiness with sugar and caffeine, but now I have ritalin to help :) It really does. It still makes maintaining everything I want nearly impossible though... one step at a time though, right? The inability to concentrate makes me frustrated and takes its toll on my studies especially. Losing time, having sat at my computer for hours when I thought it was only moments can be bothersome... and managing to get from point A to point B especially in a car without realizing I have gone anywhere is kinda scary. I can't really think of more stuff right now except for the general mental fog I'm usually in- hard time to remember, etc.
4. what work do you do? or did you do? I used to cashier all through high school and then a bit in college. I did workstudy too. I do workstudy now, again, for about ten hours a week. I'm so glad I have such a supportive and understanding boss.

5. city/state? Bangor Maine :D

6. family situation? I am married and share an apartment with my husband's best friend (for now). We're looking to move close to campus soon. We have three cats (my babies), two ferrets and a very old gerbil (about 6 years old haha)

7. family history? (not just history of n) I am adopted and recently met my birthparents. I guess my birthfather was diagnosed with N about five years ago (according to his sister, who raises my brother) and my brother on that side is beginning to show some symptoms at 16... we don't know for sure, but they're gonna get that checked out. My two sisters are nine and five, and nothing has been mentioned about that, luckily. My birthmother lives nearby but isn't ready for a relationship either so I don't see her or my two brothers on that side. My parents raised me in Millinocket, one hour north of here and I had a very happy childhood there. I have two (adoptive) brothers who are younger than me, we grew up very close. The youngest was one of my best friends for a long time. They both get bad migraines, the youngest is being sent home from the Navy right now because he apparently wasn't completely cleared. My mom and dad are wonderful people, both school teachers... I had my dad for three years actually for technology and CAD.

8. milestones and events, good and bad? Milestone would be getting on Dean's List last Spring and getting an academic achievement award this spring. Going from having to drop out a few semesters from the N to getting straight As makes me happy. Milestone two would be my medicine working so well and reaching the month mark of not having to miss work this week :D

9. if there was one thing you wanted to be known about your life as a person with narcolepsy, what fact is that? Perseverance. Keep going even when it feels like there's no hope, because eventually things can turn around. There's always more to look forward to.

10. is there another thing you want known? let 'er rip. Stay positive... it's so hard to do, but positive thinking is my number one medicine. That, and be as active as possible. Exercise naturally energizes you. Even for only a few moments a day, just get moving. Go out when the sun is shining. Find something every day that makes you happy and do it... my number one is a nice bubble bath :D

Posted on Mar 20, 2009, 3:54 PM

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The PRICE of the Xyrem medication is criminal!

by KingOfSleep (no login)

Xyrem is Life changing! I have been taking a free sample of Xyrem for 4 weeks and now for the 1st time I wake up feeling refreshed and awake. I no longer feel like a narcoleptic.

Before Xyrem, I did not sleep in over 30 years. Each day I crawled out of bed with an indescribable level of exhaustion and I reached for the Dexedrine pills just to drag through another day.

But, the PRICE of the Xyrem medication is criminal! At $1,600 per month I can't afford it. I heard the story about the politician's daughter, but the government's idea of allowing only one company to make Xyrem insures that they won't lower the price and allow people like me to have a normal life. We Must Unite & Complain about this policy! Does anybody else agree?

Posted on Mar 17, 2009, 7:31 PM

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i agree

by (Login patlittlejohn)
Moderators

we all deserve at least a SHOT at living like human beings. it is all about the cost and the extra 45 million dollar home in the Hamptons.


what they let us have, even dogs have it better.


been thinking about this pharmaceutical money game:

two uniquely effective drugs, still under very tight patent protection

(enter the political action committees and washington reps, who are prepared to pay incredible amounts of money illegally/unethically to protect the money tree) and patent extensions, exclusivity protections, official stamps of complicity every step of the way.

then xyrem and provigil (unique, effective and monopolized) are promoted off label for other things, in fact many many more uses than just a sprinkling of narcoleptics.

they dont have to compete with anyone, can get whatever sum they want for it, and hang the little sleepy guys.


as usual "policy" may describe basic human rights, such as our right to treatment that is effective and safe, and obtainable;

but policy starts to unravel when the insurers and medicaid and medicare get started paying the pharm corps for mega profits.


idealists facing the expense, say "hang the sleepy guy" with everyone else.



    
This message has been edited by patlittlejohn on Mar 18, 2009 9:27 AM

Posted on Mar 17, 2009, 8:22 PM

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Re: i agree

by Nikki (no login)

I can't afford 1000 for my Provigil or 1500 for the Xyrem, my insurance ran out 8 months ago and I have been living on ritalin. It stinks.

Posted on Mar 26, 2009, 9:07 AM

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Sodium Oxybate

by (Login patlittlejohn)
Moderators



Phil, I believe I glimpse the connection between brain deformity "drop attacks" having similar triggers and definition of N and C sudden falls...

But does this mean that sodium oxybate ("complete resolution of the drop attacks") is used during sleep? Or is this ever used in some way while awake?

Are we to infer that the benefit is from better sleep?

Maybe I misjudged the anti cataplectic use, is there a lasting serum level from taking it every night, that works all the time?



Coffin-Lowry syndrome
by phil (no login)
Treatment of drop attacks in Coffin-Lowry syndrome with the use of sodium oxybate.

Havaligi N, Matadeen-Ali C, Khurana DS, Marks H, Kothare SV.

Division of Neurology, Department of Pediatrics, St. Christopher's Hospital for Children, Drexel University College of Medicine, Philadelphia, Pennsylvania 19134, USA.

Coffin-Lowry syndrome is a well-defined clinical entity classically associated with moderate to severe mental retardation, characteristic facial features, skeletal deformities, and tapering fingers. A characteristic paroxysmal disorder was described in up to 10% patients with Coffin-Lowry syndrome, characterized by sudden loss of muscle tone induced by unexpected tactile or auditory stimuli. These events were given several names, including cataplexy, nonepileptic collapses with atonia, exaggerated startle responses, hyperekplexia, and stimulus-induced drop episodes. Various therapies were undertaken for these drop attacks, including clonazepam, tiagabine, felbamate, selective serotonin reuptake inhibitors, and tricyclics, with variable improvement. We report on a 22-year-old man with Coffin-Lowry syndrome with stimulus-induced drop episodes, who failed therapy with clonazepam, several antiepileptic drugs, and escitalopram, and who was given a trial of sodium oxybate with complete resolution of the drop attacks.

Publication Types:
Case Reports

PMID: 17950427



Posted on Dec 13, 2007, 9:51 AM


Posted on Mar 17, 2009, 3:34 PM

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Narco Tom and Dread

by (Login patlittlejohn)
Moderators

Where are you at??



    
This message has been edited by patlittlejohn on Mar 17, 2009 3:43 PM

Posted on Mar 17, 2009, 11:37 AM

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Amy and the Gang

by (Login patlittlejohn)
Moderators

In preparation for grant writing and other big jobs, Amy has taken on a heroic task. i am trying to help with some living breathing case studies.

First, we have to find that post from november or december, where i listed some of the ways our lives are different, not making up one word of it.

when i get this list of "case" symptoms and life-effects filled out, if i have one of you in mind, i will email it to you and ask if you want Amy to know your nicname or real name.


The purpose of outlining real lives and not just a broad spectrum of "life with N and C" is to authenticate the study that Amy is proposing.


she can tell you more about that, but (i just remember the person who LOST their pulitzer prize when it was discovered they wrote a composite story using "fictional" composite identities. it is a no-no.) it will all be completely above board, and only people who are interested in contributing to public awareness, etc, will be involved.

this is still the first stage and we knew that not all examples in my post would want to be involved.



since this is film, i presume any case study that makes it into production will involve interviews.


Amy, any more info?


anyone email me if you have concerns or ideas not postable here?

pat



    
This message has been edited by patlittlejohn on Mar 17, 2009 10:56 AM

Posted on Mar 17, 2009, 10:55 AM

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More info

by (no login)


Hello, pat, Hello all

Thank you pat for your help i appreciate it so much. Pat is right, i am trying to convey us in a different light then we get viewed by non narcoleptics. It is not just being sleepy or loosing your muscle tone. I must accurately the express the on going agony that we experience in our daily lives. Situations that others would not even think about as a "struggle". A good example i like that i have found on here is in the stories section. He had to be in a wheel chair because of cataplexy. Every time one of his children would say his name it would send him into a attack. Just that little of emotion triggard by the voice of his children saying his name. That is something others do not have to worry about. So i guess i need people who have had there lives stolen from them by this disorder. Either directly stolen(car crash from falling asleep) or slowly stolen each day(guy in wheel chair).
I have to convince these people that Narcolepsy awareness is just as important to fund as epilepsy or diabetes eccc.

anyone can email if you have questions

Amy Tompkins



Posted on Mar 19, 2009, 8:32 AM

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Re: More info

by (no login)

Do we have a color for awareness pins and bracelets? We should start a trend like Livestrong... maybe Narcolepsy Awareness helmets :)

Posted on Mar 19, 2009, 9:43 AM

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Awareness Ribbon

by GEM (no login)

Camouflage

Posted on Mar 20, 2009, 2:23 AM

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im trying to do the same in UK

by (Login linzi-j)

hi amy im trying to do the same thing as what your talkin about over in the UK,thats me presuming ur from the US?wud b nice to have a chat about this subject
lindsey jones xx

Posted on Mar 19, 2009, 2:22 PM

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Re: im trying to do the same in UK

by (no login)

did you get my email lindsey? i would love to chat. do you have any type of instant messaging account. That might be nice to chat on instead of just emails? Let me know

Posted on Mar 20, 2009, 10:15 AM

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problem as i see it

by (Login patlittlejohn)
Moderators

well, maybe a problem, maybe a challenge:


although my thinking has been shaped by personal histories of other people,

you have to have information on people we currently contact. does anyone remember reading quite a long thread and several weeks of sharing,

about a woman whose N was a result of a car accident, and then who happened to be driving when another catastrophic wreck happened?

i remember there was the loss or injury of a child, it was just an earth shattering series of events.


please, if you remember, refresh my memory, there was an adult sister or friend, other children, and the effects on her life were inconceivable.




i did NOT mention this to catechize about driving, because i remember neither wreck had to do with loss of control. It just sent me into a tailspin (come to think of it, probably close around 2004 when i was flaky as heck)

i had a c attack over that every time i checked the thread.

Posted on Mar 20, 2009, 8:06 AM

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cataplexy

by (no login)

Today Bob and I were sitting outside in our Arizona room playing cards. We only play Skip Bo, juvenile as it is, is the only card game I can half way play even falling asleep. I was up by two games and he was trying to convince me that his win made us tied. This maybe graphic for some, but I was holding up two fingers on one hand and one on the other, putting the one finger down then one of the two fingers on the other hand. I told him it still leaves me up by one. He is cracking up because, well it was my middle finger left standing. (oh well, you had to be here) Anyway it brought on a C attack and my head hit the card table, I couldn't move. Bob was lightly hitting my head to wake me up, I couldn't tell him I wasn't asleep, just a C attack. (He should know this by now!) He kept it up and I just couldn't get myself upright. I just kept going in and out. This was really bizarr for me. I've gone to the ground many times, but this was like, going in and out of paralysis in very rapid sequence, never really regaining normalcy. After all that, I couldn't resume the game, my brain just wouldn't function. Then he blamed the C attack on me.

Posted on Mar 16, 2009, 8:47 PM

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do dont

by phil (no login)

I brought up the idea of us comming up with a do and dont list but it turned into a big argurment because of one person


that person is gone and I think a do and dont list is a good idea


Posted on Mar 16, 2009, 11:06 PM

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Re: do dont

by (no login)

I think this is a good idea, although it should be noted that some ideas may apply to some and not others. I think that could avoid any argument that people may have, right?

Do not laugh, or physically express any emotion. This may cause cataplexy.
Do not have any emotion. This may cause cataplexy.

Just kidding. Kinda. lol

Posted on Mar 17, 2009, 5:25 AM

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laughing

by (no login)

I have always kept every emotion very close to my chest. I try and think of something else when someone says something funny, or amongst good friends, I just say "don't make me laugh" or at the least sit down so I won't fall down. It's so unfortunate, because laughter is a very good emotion, just not for us.
I remember those days of cutting up all the time, especially practical jokes, I miss that. My daughters have that same sense of humor, they are very funny. My daughter with narcolepsy, is especially witty. She only has EDS and I told her she will definately know when or if she developes cataplexy.
It's a good idea to start a do's and don't's list. My favorite saying, "I may not agree with what you say, but I will defend to death, your right to say it".

Posted on Mar 17, 2009, 7:15 AM

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Re: do dont

by (Login patlittlejohn)
Moderators

i agree, grateful i dont remember the argument.


i love to laugh, even as a kid i thought EVERYONE got that funny rush when the laugh was great

Do pick the safest place to stand or sit, round corners, soft surfaces.




Pam, that episode at cards with your husband has been on my mind all night. You must have been so happy with your new Arizona room, or screen porch some call them; having your guard down and sharing that close understanding and then the joke must have sneaked under your defenses.

He probably (want to say "lashed out", you know what i mean) "blamed you" because he has to feel like he knows the parameters after so many years, what to expect, how to keep it under control and protect you. and he probably got scared.

you too.






    
This message has been edited by patlittlejohn on Mar 17, 2009 7:45 AM

Posted on Mar 17, 2009, 7:29 AM

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Re: do dont

by (no login)

I have to pass this along as well. It's been a very long time since I have had a full fledged attack without making it to a chair or someone catching me.. but the other day.. whew. I have a 'weakness' for pea and bacon salad.. the kind you buy at the grocery store delis. I haven't had it since I left my sisters (she always bought it for me.. lol) and hadn't mentioned it to my ex here that I liked it. The other day he came home with chicken.. and pea and bacon salad. I got all excited and walked over to look at it to make sure it was the one I liked..it was. I started losing it and was trying to hand him back the salad before I dropped it but he didn't realize what was going on (yes, Pam..I understand you.. Lee has known me for 20 yrs and didn't know what was happening.. ahem).. next thing I know.. salad is on the floor and so am I. Luckily.. the lid didn't come off the salad.. lol. Me.. I was sore for a couple days but I had a great dinner :). Was forced to realize.. you know, at 51, it's just not as easy as it used to be to get up off the floor.



    
This message has been edited by cataplexic on Mar 17, 2009 11:57 AM

Posted on Mar 17, 2009, 11:55 AM

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Re: do dont

by (Login patlittlejohn)
Moderators

oh Melody!

I dont know what is up, (I am certainly not getting older; I do all my growing older in June) but lately i do a vaudeville swoon.

The floor is pretty far down there, alright. getting up just takes the last of my dignity, i have to get on my hands and knees first.



yes yes, i truly believe it happens with people we are really close to, and our guard is down.



    
This message has been edited by patlittlejohn on Mar 17, 2009 1:17 PM

Posted on Mar 17, 2009, 1:16 PM

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A good Pea

by Bulldawg (no login)

I understand Melody, it's been a while since I had a good pea also.

Posted on Mar 19, 2009, 10:15 AM

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Re: A good Pea

by (no login)

Hahahaha.. I think they have meds for that too.. lmao.

Posted on Mar 19, 2009, 11:58 AM

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do dont

by (no login)

Narcoleptics DO make good deer hunters, they DONT make good deer slayers!

Posted on Mar 19, 2009, 12:59 AM

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Portland - N. confrence?

by (no login)

Was anyone able to attend the meeting yesterday in Portland,Oregon? I would have liked to go, but
that stomach flu hit with a vengeance and I was still feeling its reluctance to let me be. I am going to check the cost of AM Track. Since I will not drive over 50 miles, it may be a good alternate to staying home all the time.
Perk up people - it will soon be Spring!
Life is good - in the great North West!

Posted on Mar 16, 2009, 7:32 AM

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Let Me Chew My Coca Leaves

by Anonymous (no login)

Let Me Chew My Coca Leaves By EVO MORALES AYMA

THIS week in Vienna, a meeting of the United Nations

Commission on Narcotic Drugs took place that will help shape

international antidrug efforts for the next 10 years. I attended

the meeting to reaffirm Bolivia’s commitment to this struggle

but also to call for the reversal of a mistake made 48 years ago.

In 1961, the United Nations Single Convention on Narcotic Drugs

placed the coca leaf in the same category with cocaine — thus

promoting the false notion that the coca leaf is a narcotic — and

ordered that “coca leaf chewing must be abolished within 25

years from the coming into force of this convention.” Bolivia

signed the convention in 1976, during the brutal dictatorship of

Col. Hugo Banzer, and the 25-year deadline expired in 2001.

So for the past eight years, the millions of us who maintain the

traditional practice of chewing coca have been, according to the

convention, criminals who violate international law. This is an

unacceptable and absurd state of affairs for Bolivians and other

Andean peoples.

Many plants have small quantities of various chemical

compounds called alkaloids. One common alkaloid is caffeine,

which is found in more than 50 varieties of plants, from coffee

to cacao, and even in the flowers of orange and lemon trees.

Excessive use of caffeine can cause nervousness, elevated pulse,

insomnia and other unwanted effects.

Another common alkaloid is nicotine, found in the tobacco plant.

Its consumption can lead to addiction, high blood pressure and

cancer; smoking causes one in five deaths in the United States.

Some alkaloids have important medicinal qualities. Quinine, for

example, the first known treatment for malaria, was discovered

by the Quechua Indians of Peru in the bark of the cinchona

tree.

The coca leaf also has alkaloids; the one that concerns antidrug

officials is the cocaine alkaloid, which amounts to less than

one-tenth of a percent of the leaf. But as the above examples

show, that a plant, leaf or flower contains a minimal amount of

alkaloids does not make it a narcotic. To be made into a

narcotic, alkaloids must typically be extracted, concentrated and

in many cases processed chemically. What is absurd about the

1961 convention is that it considers the coca leaf in its natural,

unaltered state to be a narcotic. The paste or the concentrate

that is extracted from the coca leaf, commonly known as

cocaine, is indeed a narcotic, but the plant itself is not.

Why is Bolivia so concerned with the coca leaf? Because it is an

important symbol of the history and identity of the indigenous

cultures of the Andes.

The custom of chewing coca leaves has existed in the Andean

region of South America since at least 3000 B.C. It helps

mitigate the sensation of hunger, offers energy during long days

of labor and helps counter altitude sickness. Unlike nicotine or

caffeine, it causes no harm to human health nor addiction or

altered state, and it is effective in the struggle against obesity, a

major problem in many modern societies.

Today, millions of people chew coca in Bolivia, Colombia, Peru

and northern Argentina and Chile. The coca leaf continues to

have ritual, religious and cultural significance that transcends

indigenous cultures and encompasses the mestizo population.

Mistakes are an unavoidable part of human history, but

sometimes we have the opportunity to correct them. It is time

for the international community to reverse its misguided policy

toward the coca leaf.

Evo Morales Ayma is the president of Bolivia.


Posted on Mar 14, 2009, 3:33 PM

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Funny

by (no login)

So I just finished my work week, 54 hours in 4 days. Im so tired and my N is kicked in and having a hard time standing up without falling over. Anyways enough of that. I heard the funniest thing the other day I figured yall would appreciate. I was watching Bill Maher and he made the comment about insurance (Teressa you made me think this one saying you worked for Blue Cross/Blue Shield and getting screwed over). He said "Insurance companies are a lot like hospital gowns. Chances are......... your A$$ isn't covered" lol.

Funny stuff.

Posted on Mar 13, 2009, 4:10 PM

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re

by phil (no login)

I have Bill Maher's movie Religulous on order at netflix, smart guy and funny also.

Posted on Mar 13, 2009, 8:53 PM

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lol

by (no login)

That he is. I dont agree with everything he says lol. But he is still a really really funny guy. I like the way he percieves things the way he does and then comes off with some hilarious stuff out of it and itsnt afraid to say anything. Just funny stuff.

Posted on Mar 14, 2009, 12:05 PM

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Re: lol

by (Login patlittlejohn)
Moderators

outspoken. i like him.

Posted on Mar 14, 2009, 8:21 PM

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Social Security

by (Login patlittlejohn)
Moderators

Disability secrets

http://www.disabilitysecrets.com/


alot of good advice, i am reading through their pages, and i cant say i disagree with any of it.

"What role does your past work play when you are filing for social security disability or ssi in north carolina (including charlotte and other areas)? Well, your past work and the skills that were used in your past work happens to be a fairly large component of the social security disability evaluation system.

The skills that your past work may have conferred on you may help determine whether or not there are any other types of jobs which you may be capable of doing.

Also, the exertional requirements of your past work will be taken into consideration in this manner: if your physical and/or mental condition prohibits you from performing the exertional or mental requirements of your past work, you will not be expected to return to such work.

i am adding this site to a page about seeking disability, to post with our Definitions Page.

please advise me here, your experience, what you have found to be true, what you find on this site that is positive and negative.

Posted on Mar 13, 2009, 3:29 PM

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more research discoveries

by (Login patlittlejohn)
Moderators

Narcolepsy Genetic


http://www.neurotransmitter.net/narcolepsygenetic.html

by N standards this is current:
(Updated 7/01/06)[Research published prior to 1990 has been excluded.]

linked to that site, Some FDA guidelines for general anaesthesia drugs, in this case with concern to migraine , not yet cross referenced with N drugs

http://www.neurotransmitter.net/migraine_drug_reference.html


Talk about sleep message board for "under 30" in case you never saw it

http://www.talkaboutsleep.com/message-boards/viewforum.php?f=14

recent post from mar 9 2009 has 11 replies, so it is current and alive

Posted on Mar 13, 2009, 3:55 PM

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Updates, please

by (Login patlittlejohn)
Moderators

The threads are running off the bottom of this page, and i would really like to have updates about how you are,

Vickie,
Phil,
John,
Linzi,
Kerrie,


Pam is emailing me and calling, thank God

and ANYONE ELSE who is going through s**t storms right now.



as for the Pastor Albee household, our little runchkin started eating again this morning. he was feeling puny for almost 2 solid weeks and i was really preparing myself to lose him.

fed him and kept him hydrated with a dropper around the clock, and the C was just kicking my bu... b**tt!


by chance i found out that generic dayquil helps with C and clarity, if that is useful to anyone.

God bless,

you make me proud.


pat

Posted on Mar 13, 2009, 12:16 PM

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The Chronicles continue

by (no login)

I brought my wife home from the hospital on Tues. after 5 days more battle with her Lung problem.
It seems all the time I spent in the hospital, visiting, I brought home a hitch-hiker. Tues Night I came down with Stomach flu. It hit with a vengeance, Wed. was a blur, and yesterday was not good, but I am up and running today. My stepson was hit with it last night, so he is down today. My wife did not feel very good this morning, so she has stayed in bed all day. I hope with all the antibiotics she is on for her lung, will hold some of the effects of the flu.
But hey - we just have to keep slugging along, so that it does not drown us. There is a rainbow some where, and I can almost see it.

Just another episode in the daily chronicles that we all face

Posted on Mar 13, 2009, 3:25 PM

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Re: The Chronicles continue

by (Login patlittlejohn)
Moderators

oh GEM, that really challenges your strength and optimism, after all you both went through during this hospital time!

God bless, Dear,

we are praying for you.


pat

Posted on Mar 13, 2009, 3:31 PM

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Chronicles

by Bulldawg (no login)

Time marches on in my situation. IN my "storm" weather has improved some but storm clouds still on the horizon. The wet season is far from over.

Posted on Mar 16, 2009, 4:04 AM

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Re: Chronicles

by (Login patlittlejohn)
Moderators

catch your breath, but dont let your guard down.

God bless, Dawg.

Posted on Mar 16, 2009, 10:02 AM

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Finally Diagnosis Confirmed

by Theresa (no login)

Ok finally had my diagnosis confirmed. I have upper airway breathing disorder so my Dr put me on CPAP and I really don't see where that is helping. She also put me on Provigil and that is not helping me. Finally after 3 sleep studies, MSLT and blood test got the diagnosis of Narcolepsy. The provigil has too many side effects for me so we are going to try a generic drug on Monday when I go in because I have lost my job due to all of this and my husband was laid off so we have no health insurance. Wonder company that I worked for, Blue Cross Blue Shield would not grant my leave of absence while we got to the bottom of things even though my doctor requested it and I would have at least qualified for a personal leave. Anyway, a few things...what is a good generic? I get Migraines anyways and the Provigil and 200 and 400 mg cause terrible headaches, confusion, agitation, anxiety and I still feel terribly tired just that I can physically feel my body going throught he struggle to stay awake.

Second, is anyone else freezing with this? If may just be a coincidence and we have had a bad winter here in IL but I have been freezing this whole winter?

Third, we are moving to NC in June and around Canton NC and does anyone know of a good doctor that would be knowledgable about Nacrolepsy. The doctor mentioned that the medication she will put me on will likely be a controlled substance and I hope I don't have any problems with that going to a new doctor.

Last and sorry this is so long, does anyone else feel like this is making them crazy? I have OCD and this just does not mix well. This does not allow me to keep my routines. These routines in my mind at least essentially make up who I am and no I am no longer capable of keeping up with them-not even close. This in turn is causing great depression. Which by the way was NOT the first problem which I have to remember to make sure is a major distinction when talking to primary physician. This all gets so complicated.

Oh sorry I lied, I guess there is one more thing...how do you deal with people. Oh all the "Are you rested yet?" Well you better dring some more coffee. Some days I want to scream. I know they don't understand but honestly I don't think I have the energy to deal with it all anymore.

Any advice would be appreciated. ...VERY TIRED at least I know you all understand that!

Posted on Mar 12, 2009, 10:15 PM

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Re: Finally Diagnosis Confirmed

by (Login patlittlejohn)
Moderators

Dear Teresa,

oh wow, this is a lot for you to deal with, dear heavens i am so sorry. you know there was not one word you posted that we misunderstand.

First get that Diagnosis in hand, copy it, keep the original safe, and put the most compelling tests and decrees with it. i have a set of dx papers that i carry with me.

Second, you need to march right down and get an application at the social security office. if they try to confuse you about which type you are eligible for, insist on ALL the applications. your eligibility is your business, you will find out and get it documented, not some pencil pusher in there.

EVERYONE,
now when you try to apply for any benefit (like temporary assistance from county and state agencies, like food stamps from federal Dept of Agriculture, like federal funds for financial support or fed money that is administered by each state for medicAID or fed money for medicARE)

the demand and need are so overwhelming because of the economic meltdown, and funding has not been set up yet for the changes,
AND the agencies are actually laying off workers while seeing a 150% or more increase in case load,

So there are official and self-appointed obstructors in place at every level of the process!

1. keep a notebook, write down who you spoke to and what they said, date, time. Phone calls, walk-ins, inquiries, appointments (with everyone like docs and bureaucrats.)
sometimes i write quickly "so-and-so, date, time, told me this was not available" or "application delivered to -Agency- at -address-, date, time," and then i demand that someone there SIGN it. They usually pass it up the line to a supervisor who will grudgingly put themeselves on record.
keep that in your notebook, not on loose paper. if they need to keep a copy, they can xerox your page.

2. as soon as there is an obstruction in your process, and you seem stuck, email me or post here, or even call me on the phone.

3. get physical help with this, your husband or sibling, even your teenager, a friend or a willing neighbor. the waiting is horrendous, even to pick up paperwork. waiting in lines and huge waiting rooms is impossible for us, but with a physical companion we can comply; (more about this kind of support, in case in your area there are ADA requirements to make appointments over the phone for social services intake, or in case you can have a legal representative jump through these hoops in your place, i will find out more and post later.)

4. get started with the full disability classification in social security system. we can expect them to be swamped too, and the worse things get the harder and slower it will be and the more you may need it.
use the oldest starting date on your case/application that you can; they prioritize by starting date at social security, and there is (max 2 year) back benefits due you when you succeed.

you can pick a type of application (SSDI or SSI) even if you are not indigent yet, or your work history still seems like you do not qualify, but you need to get the official status of disabled started now.

the paperwork you submit to social security will be there forever, and you can always add to it. as you get more testimonials or test data, take it in to your case worker, have it added to the file, besure someone signs your notebook,

then in future reference to your case, hopefully the same case worker (but that might be impossible because of layoffs) your status "disabled" will be a fact that they cannot reverse.

for the purposes of either kind of coverage (supplemental security income is what i have, based on my indigent situation, no property, unable to work... social security disability insurance which some of us have, based on inability to work and a past work history, and payments into the ss system, which qualify you for their insurance; the first SSI gets me on medicAID which is the same health insurance that the very poor get, the second SSDI gets you on medicARE, like retirees gets.)
for either purpose, you need to be UNABLE TO WORK by their decision, and they do try to insist that we can "take tickets at a theater", or "sort plastic forks coming off the assembly line". They go through the motions, but the facts are:
we cannot do standing, or sitting, or repetitious, or "eventful", or unskilled tasks around machinery, or essential services ... we are unable, and
we WOULD do those jobs if we could, we do not want or deserve to lose everything, we are not "on the mend" or expecting improvement, but would dearly love to be.

you cant put this in your paperwork openly as "NOT FAKING", so you will have to get absolutely fantastic documentation and testimonials to show it.

5. I have never posted this before, but desperate times demand that I do:

I NEVER GO TO ANY OF THESE MEETINGS/APPTS WITHOUT SAYING A FERVENT PRAYER. if you only do it to humor me, start doing it!



6. Get as much documentation as you have right now absolutely correct and in hard copy. when you have all you can to get started with, put a complete copy of everything in a manila envelope to carry with you, in case. SHOW your originals, let them see them, and NEVER PART WITH THEM.

(note in your notebook who-where-when received copies of your documents)

7. While you are waiting on other things, begin to get written statements from doctors, neighbors, relatives, co workers and friends. (hard copies of your medical records, even if you have to add the cost to your bill) (copies of any specialists' records and test data, printouts, their personal notes to your primary physician should all be in your possession)

I have said this before, Social Security, and in some cases county/state/federal assistance agencies, rely very heavily on the described changes in your ability to work, drive, care for yourself, travel alone, run errands, cook, clean, everything. the say so of people around you, particularly when it all jibes and they agree, is VERY SUBSTANTIAL. set aside your pride, even if the grim reality is (in my case, i am simply helpless to get anywhere on foot, by car, by taxi, by bus, by plane... alone. this is considered extremely disabling, and dependent on help.), and it IS embarrassing.

Get those written statements as added description to the SS application forms, or as questionnaires you print out yourself, or as short written descriptions in the people's own handwriting,
or if they will not do it, write it as they tell you and have them sign it,
or whatever they will do.
Dont settle for promises or maybes or sometimes. Get every bit of documentation if you have to wheedle, beg, and guilt them into it.

Get many more than the application requires.

You will especially need the formal findings and (licensed and empowered) opinions of your docs. If you just know a doc personally who knows of your symptoms in real life experience, that is great! use that. Doctor's opinions will weigh in directly AGAINST the bozo doc social security sends you to.

posting this, while i edit and add to it.







For now, the provigil sounds too volatile for you, thats for sure. the agitation that some of us get from provigil must be making the OCD and normal anxiety and stress just unbearable.

Let me try an area search on your move, that seems to turn up better leads than the phone book.

you can get treatment for migraine as a basic health area, and be sure they have your N and OCD in mind. or treatment with a Psychiatrist that treats people with sleep disorders, with the rest in mind. You should probably decide which condition is most acute and target that as number 1.

you may have to rethink that after the move out of state, providers in different specialties just may not be the best available there. In any case, remember YOU are your own primary care decision maker. This comes up for us with multiple acute concerns, more than other people.
Before you are seen or get an appt, ask on the phone: Does the doctor treat sleep disorders patients NOW, already? or migraine patients. if they cannot tell you that, keep dialing. You dont have time to waste.



About the apnea and the CPAP, some questions you should consider:

what was the testing like? did you FEEL that it was under control, did you have confidence in the test technicians and staff? did you have any conference with a doctor there, and discussion of their findings?

have you seen what they submitted to your doctor?

(get copies of as much of that process and data as you can).

the CPAP treatment should have improved something immediately. in my experience, treatment was begun with the WRONG machine, wrong pressure settings, the wrong mask, even some wrong data from very questionable tests. for more than 18 months CPap was totally ineffective (everything else continued to crash for me while the sleep deprivation intensified) and i was continually labelled "non compliant with treatment".
the very day that i was started with my machine and mask, at a setting that i insisted was tolerable (lower than prescribed), i had a full night of heavenly sleep.
it happened to be a bipap, which a new doc prescribed in a new state, very expensive and cycling an exhale every couple of seconds. it could be that i am habituated to that comfortable exhale, and that is why i no longer need the bipap to keep sleeping well. my bipap broke and i got an old cpap from my brother in law.
it is likely that what i really need is the kind of mask i use, which has exhale holes (i do not understand why the pressure is maintained until i need to breathe out) but it is also just right for me because i dont feel it on my face: Breeze mask with nasal pillows. i have lots more info on that if you like.

if you are not getting better rest, dont believe what people tell you, that the technology has not been improved (it has! and i was told by one lab tech my machine was obsolete, then by the doc that i was just noncompliant)
dont give it a chance for longer than 3 weeks, it should be able to work and you should be enjoying the benefit long before 3 weeks.
dont believe that you adjust to the treatment, because the treatment must be adjusted to you.



About trying meds: does your doctor (ask and then take notes in your notebook) consider the actions of different kinds of meds, like some people benefit from antidepressants (more than one kind) or even central nervous system stimulants AND depressants, all differently in narcolepsy.

I dont believe "generic provigil" is available, please nail down the doc on that subject and take notes.

ask about trying different meds, or combining them in different amounts. make sure there is NOT a 3 or 4 week trial plan for them, you should be able to work this out at your own pace and be able to see or speak to the doc when you need to. you will be the best judge of when something helps (a little, a lot), if it exacerbates one of your other problems, and how long it takes to get out of your system to prudently try or add something else.

no trial of a med should put you through migraines more than once or twice.

some people with n are actually made more alert with some serious pain medication, so if that is workable with the anxiety and migraine (benefitting them) and keeping you alert and clear headed, your doc should not be mind-set against it. this will be a challenge with controlled substance concerns, but some of us deal with that in order to have the improvement.

the physical pain we feel from the struggle to stay awake may be one of the less-well-known physiological aspects of N and C, or it may be undiagnosed fibromyalgia or something like that. i would not bother getting that diagnosis yet, unless it becomes necessary to bolster your application for "disability" status with any social security or social services concerns. or if treatment with a broader range of meds is dependent on it.
just keep it in mind.

the colder weather everywhere this winter has thrown some of us into a tailspin, even for people like me who run hot most of the time. increased C for me means i am getting that deep nauseating chill more often, and then a journey into fuzzy space on top of the rest. hopefully that will be resolved with spring and summer, and you will not be so burdened with it.

the personal aspects of OCD are impossible for most of us to understand. some with bipolar concerns, too, are controlling the chaos with meds that also "distance" them from feeling like their real self. I cannot state strongly enough that we have a right to be treated to the best of the available knowledge and tools, until we are closest to living normally.

the accumulation of discouragement, and coping with very diminished future prospects, accepting poverty and injustice, and personal hostility from family/society, all put us at the highest risk for deep depressive and social suffering. when you are getting treatment, keep in mind that what you seek is considered ABSOLUTE MINIMUM expectation of quality of life.

God bless you and bless your husband and family for loyally going through this with you.

i am going to search your new home-area now, if you have any questions, ask away: someone here may know the answer.





    
This message has been edited by patlittlejohn on Mar 13, 2009 11:53 AM
This message has been edited by patlittlejohn on Mar 13, 2009 10:57 AM
This message has been edited by patlittlejohn on Mar 13, 2009 10:56 AM
This message has been edited by patlittlejohn on Mar 13, 2009 10:10 AM

Posted on Mar 13, 2009, 9:24 AM

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search for Canton NC

by (Login patlittlejohn)
Moderators

Let me try an area search on your move, that seems to turn up better leads than the phone book.


Also, it would be wise to find out driving requirements in NC, that may change your status, ability to drive, and may require the doctors to report you.


this site sells herbal alternatives, but a post here that mentions the University of North Carolina, which specializes in testing for dyslexia and another related sleep disorder, Narcolepsy.
http://www.cellhealthmakeover.com/narcolepsy.html


North Carolina (NC) Sleep Medicine Doctors and Physicians
Find comprehensive reports and ratings on a local sleep medicine doctor, physician, or surgeon, by city

http://www.healthgrades.com/local-doctors-directory/by-specialty/sleep-medicine/north-carolina-nc

The Johnson Neurological Clinic of High Point, North Carolina
http://www.johnsonneurological.com/referral.html

they list these, i believe they are national information sites, under
Narcolepsy
American Academy of Sleep Medicine
http://www.aasmnet.org
National Sleep Foundation
http://www.sleepfoundation.org

Winston Salem Baptist Hospital
http://www1.wfubmc.edu/

Narcolepsy...Sleep Apnea Wake Forest Baptist ApproachThe Wake Forest University Baptist Medical... Center’s Sleep clinic is a diagnostic...
http://www1.wfubmc.edu/Pulmonary/DiseasesConditions/Sleep+Apnea.htm

Pulmonary & Critical Care :: Wake Forest University Baptist Medical Center
, restless leg syndrome, insomnia and narcolepsy...John Conforti, DO John Conforti, DO I... was born and raised...
http://www1.wfubmc.edu/Pulmonary/Faculty/John+Conforti+DO.htm
Pulmonary & Critical Care :: Wake Forest University Baptist Medical Center
Restless leg syndrome Narcolepsy...Sleep Disorders Center Sleep Disorders Center Specialists within the Section of Pulmonary..., work closely with a multi-disciplinary...
http://www1.wfubmc.edu/Pulmonary/patientInformation/Sleep+Disorders+Center....
Sleep Disorder Center
Index
index Narcolepsy The Sleeping Illness Narcolepsy... sleepiness. Narcolepsy... for this disease confirming that narcolepsy...
http://www1.wfubmc.edu/sleep/Narcolepsy/index.htm

Index
such as insomnia, narcolepsy...index The Sleep Disorders Center at Wake Forest University Baptist Medical... Center specializes in the evaluation...
http://www1.wfubmc.edu/sleep/index.htm



Narcolepsy; Greenville North Carolina NC
Narcolepsy - University Health Systems of Greenville North Carolina, list of hospitals
www.uhseast.com/132783.cfm
Pitt County is part of the University Health Systems of Greenville
PCMH Sleep Center to offer free sleep screenings
Pitt County Memorial Hospital
http://www.uhseast.com/132783.cfm


Cape Fear Valley Health System
http://www.capefearvalley.com/home/home_page.html

There is a description of Narcolepsy and treatment on this site, but it is not their specialty, and i find no sleep medicine department. They may do referrals.
Cape Fear Valley Health System. 1638 Owen Drive. Fayetteville, NC 28304-3431 (910) 609-4000

I found a reference to "...distinguished leaders in the field of sleep medicine and chaired by Dr. Richard K. Bogan of Columbia, SC",
searching for his organization or website.
CHEST 2008 listed him "Richard K. Bogan, MD, Columbia, SC"

Clinical Investigator Inspection List For Investigational New Drug Studies
http://www.accessdata.fda.gov/scripts/cder/CLIIL/index.cfm?fuseaction=Browse.Browse&NameFirstLetter=B&StartRow=161&SortField=PostalCode&SortRequest=0
Bogan, Richard K, MD
Baptist Med Ctr. Taylor & Marion St
Columbia SC

He was associated with Sleepmedmd, which lists in a search for NC:
(*Keep in mind these are probably privately owned sleep labs that rent or do business in hospitals, and are not necessarily as good as the reputation of the hospital.
A lab can be set up with minimal facilities, not a real clinic, and may have no actual MDs on site during testing.*)
Alamance Regional Medical Center
1240 Huffman Mill Road
Burlington, NC 27216
Map It Sleep Studies
Sleep Therapy Burlington
Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504

SleepMed
601 Keisler Drive
Suite 100
Cary, NC 27511
Map It Sleep Studies
Sleep Therapy Cary

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


WakeMed Cary Hospital
200 Asheville Avenue
Suite 30
Cary, NC 27511
Map It Sleep Studies
Sleep Therapy Cary

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


SleepMed Therapy Services
5550 77 Center Drive
Suite 240
Charlotte, NC 28217
Map It Sleep Therapy Charlotte

Scheduling Information:
Phone: (704) 523-3489
Fax: (704) 523-3490


SleepMed
5322 Highway 55
Suite 102
Durham, NC 27713
Map It Sleep Studies
Sleep Therapy Durham

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504



SleepMed Therapy Services
7325 West Friendly Avenue
Suite S-F
Greensboro, NC 27410
Map It Sleep Therapy Greensboro

Scheduling Information:
Phone: (336) 837-0770
Fax: (336) 837-0773


Sandhills Regional Medical Center
108 Endo Lane
Suite 3
Hamlet, NC 28345
Map It Sleep Studies
Sleep Therapy Hamlet

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504



Scotland Memorial Hospital
500 Lauchwood Drive
Laurinburg, NC 28353-8000
Map It Sleep Studies
Sleep Therapy Laurinburg

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


Wilkes Regional Hospital
1370 West D Street
North Wilkesboro, NC 28659-0500
Map It Sleep Studies North Wilkesboro

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


Pinehurst Surgical Clinic, PA
5 First Village Drive
Pinehurst, NC 28374
Map It Sleep Studies
Sleep Therapy Pinehurst

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


SleepMed
123 Sunnybrook Road
Suite 130
Raleigh, NC 27610
Map It Sleep Studies
Sleep Therapy Raleigh

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


SleepMed
3921 Sunset Ridge Road
Suite 103
Raleigh, NC 27607
Map It Sleep Studies
Sleep Therapy Raleigh

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


SleepMed
119 Kandemor Lane
Rocky Mount, NC 27804
Map It Sleep Studies
Sleep Therapy Rocky Mount

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


Johnston Memorial Hospital
509 N. Bright Leaf Boulevard
Smithfield, NC 27577
Map It Sleep Studies
Sleep Therapy Smithfield

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


SleepMed
123 Capcom Avenue
Suite 10
Wake Forest, NC 27587
Map It Sleep Studies
Sleep Therapy Wake Forest

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


SleepMed
1602 Physicians Drive
Suite 102
Wilmington, NC 28401
Map It Sleep Studies
Sleep Therapy Wilmington

Scheduling Information:
Toll-Free Phone: (866) 937-6692
Phone: (919) 570-9715
Fax: (919) 570-9483
Toll-Free Fax: (866) 427-8504


SleepMed Therapy Services
200 Charlois Boulevard
Suite 450
Winston Salem, NC 27103
Map It Sleep Therapy Winston Salem

Scheduling Information:
Phone: (336) 837-0770
Fax: (336) 837-0773

Posted on Mar 13, 2009, 4:11 PM

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Thank you

by Theresa (no login)

Thank you very much for all of the useful information. It is all very overwhelming at the moment and you had some wonderful advice.



Posted on Mar 13, 2009, 7:44 PM

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Re Thank You

by (no login)

We mostly ALL agree with you, and we have voted her as our next "Super Hero" We just have not made up our minds about her
super name or Super Image! Wonder Woman has been taken, and Captain Little John isn't quite right.
I thought Narco Queen was good, but most people would not take it right. Any suggestions?

Posted on Mar 13, 2009, 10:37 PM

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guardian angel

by (no login)



Posted on Mar 14, 2009, 4:34 AM

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I like Super Snooze

by (Login patlittlejohn)
Moderators

But the initials are kind of eerie.



Posted on Mar 14, 2009, 7:52 AM

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Re: Finally Diagnosis Confirmed

by Scarlet (no login)

Hi Theresa I'm Teresa as well!

I was diagnosed with N in Feb of 2008 and just recently diagnosed with Upper Airway Resistance too. I am hopeful with cpap in addition to my current med regime for N I'll return to more than just a shadow of my former self.

My current neuro has a few other N patients who also have a breathing disorder too.

I also did not have good luck with provigil. I had all the symptoms you mentioned and also a severe rash with joint swelling. My next stimulant was ritalin. I started on 5mg 3x day then upped to 10 mg 3 x a day and we eventually added ritalin LA 30mg too.I did very well until the lack of sleep caught up with my increase in energy. My neuro then added Xyrem at night which was a blessing in disguise.

Unfortunately my endocrinologist wasn't up to date on N and left me under medicated for thyroid and I landed in the ER 3 times only to learn I was having seizures due to lack of thyroid hormone! That was 4 weeks ago.

I happily restarted a small dose of xyrem last night have have not needed a nap today while at work!!!

Anyway I just wanted to say " HI" . The most important thing I've learned along this journey is to always pace myself and to learn it is ok to say no!





Posted on Mar 13, 2009, 12:43 PM

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Apnea

by (Login patlittlejohn)
Moderators

They will tell you that apnea has this cause and that cause, in the normal population often because of overweight, age, airway deformity, sometimes with cardiopulmonary trouble,

and yes, i am glad they check for all that.


but the cutting edge of research in N and C is not very well known yet, and i have read that there is an autonomic process at fault in N and brain disorders, too.


if they first want you to lose weight and "get to bed at the same time" etc, that may mean months more experimentation.

from my experience, although my machine works for me now, i did not improve during the 18 months that i lost more than 100 pounds and my whole life spiralled into the toilet.

Posted on Mar 13, 2009, 1:22 PM

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Hello

by Theresa (no login)

Hi Teresa,

I am glad you found something that seems to be working. My regular Dr. had tried Ritalin 10 mg while I was waiting to get in to the sleep dr and it didn't do a lot but maybe it wasn't enough.

I don't know what the Sleep Dr is going to change me to on Monday. I know it won't be the Xyrem becasue I don't have insurance but it will be something generic. I am hoping something will work.

I am glad you figured out that you needed more Thyroid medication because that can be very dangerous to be so low.

Thanks for the welcome.

Theresa

Posted on Mar 13, 2009, 7:48 PM

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re: Finally Diagnosis Confirmed

by (no login)

It's always nice to have that dx, at least it says it's not in our head, but in our brain.

I too, have apnea, both obstructive and central. I've been on cpap for one year next month. It's been trial and error. I go through Lincare for my supplies and have a great physical therapist. I also have a bipap machine that automatically adjusts the pressure, it has a heated humidifier and c-flex so I adjust my exhale. I have gone through many masks to find just the right one. My problem is I have a nasal mask, which is a Fisher and it works great as long as my allergies are not bad. When my nasal passages are plugged up and can't breath, I wake up abruptly, ripping off my mask because I can't breath. I've tried several full face masks and haven't found one yet that I'm comfortable with. It is a constant hassel. My sleep did improve somewhat since I've been on the cpap, but it really doesn't have a thing to do with N and the fragmented sleep that we have. The past two nights I haven't been able to sleep hooked up to the machine due to allergies so I do have a bit more EDS.

You all know by now that I'm retired and not on meds. I would love to be able to take something to stay awake and feel focused. I have trouble with provigil also, it gives me a chronic headache and anxiety. I've tried to stick it out for a couple of weeks, same with ritalin, but I still seem to be able to fall asleep if I sit in a passive position or lay down. I am just one of those people that are extra sensitive to medication and it doesn't matter what meds or for what problem.

I'm a bit of an OCD person too and this drives me crazy. I get so tired because I'm always busy doing something because if I stop and sit, then I'm asleep. This drives Bob nuts, as he is a sitter and I'm always up finding something to do. I think it really adds to our fatigue. I used to look forward to going to bed at night, but I almost exhaust myself sometimes because my sleep is so crappy I hate to think of waking up in the morning. It takes three hours usually for me to get my s#$* together.

Good luck Theresa, I hope all goes well and good luck finding a new doctor. That's going to be a real trial and error. Hopefully, Pat can give you some good leads.



Posted on Mar 13, 2009, 7:55 PM

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allergies and congestion

by Scarlet (no login)

Pam-
I always had trouble with my sinuses too. I was averaging an infection every 8-10 weeks. What I found to really work was 1/2 a drop of oil of oregano in a sinus rinse. It burnt like heck the first time but I haven't had to go back to the ENT since early January and no antibiotics since december. I only use the oil when I feel something coming on. I also carry a saline nasal spray for when the air is dry and the first sign of stuffiness.



Posted on Mar 14, 2009, 5:14 AM

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ouch

by (Login patlittlejohn)
Moderators

Scarlett,

you are a brave one!

Pam and I just cannot sleep (words to strike fear into the heart) if we cant use our masks.

so if the oil of oregano works, and Scarlett can do it, i am completely encouraged to try it.








Posted on Mar 14, 2009, 8:19 AM

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Re: ouch

by Anonymous (no login)

Make sure to mix it with water!!!!!!

Posted on Mar 14, 2009, 12:19 PM

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lol

by (Login patlittlejohn)
Moderators

uh yeah. straight oil of anything will give you a moment of total clarity.

Posted on Mar 14, 2009, 8:22 PM

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irrigation

by (no login)

Scarlet,

I used to irrigate everyday with just saline and sea salt. Since I had my sinus surgery about five years ago, I don't suffer from sinus infections anymore (knock on wood) my sinuses drain fairly well, but I found that I can no longer irrigate my sinuses, it hurts just like after my surgery (I thought they set my face on fire). It is important to irrigate with sterile saline or purified distilled water, no tap. I use "ocean" saline spray and occasionally use Rhinocort, steroid spray. Ofcourse I take Allegra 2x a day, most days, but I'm just allergic to everything growing outside, dust, molds, mildews, you name it. The best thing for me is the old boiling water on the stove, a towel over you head and breath the steam to unplug everything.

Posted on Mar 15, 2009, 8:00 AM

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Re: Finally Diagnosis Confirmed

by (Login mikenotar46)

I'm in the same boat right now with people understanding. I have times when I sleep almost 24 hrs a day. My son in law just told me that if I can get up to the bathroom I can just walk out the door and go around the block and that will wake me up. He's my best friend but I could knock him out. He also tells me not to take naps. He feels that will make me sleep better at night and I won't feel so tired the next day.I refuse to talk to him about it any more. I think the best thing to do is keep it to yourself unless it is absolutely nessasary. Sorry you have to go through it.

mike

Posted on Mar 16, 2009, 9:29 AM

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ARRRRGHHHHH

by (Login patlittlejohn)
Moderators

wtf??? after the last 4 years!!????


and we get this from our very closest friends!!!

this morning SomeoneWhoShallRemainNameless was describing this flu/fever "I'm afraid I will nod off right here, alone up and down all night, and hit my head on the corner of the table... I cant fight it, I'm in a fog...."""""


well YEAH, whaddaya think i have been telling you all this time???


WELCOME TO OUR WORLD!


sorry, venting

Mike, no no no dont deprive yourself of sleep when you are probably going to switch off sitting at the table anyway and really freak them out...

dont put yourself through the physical pain of fighting it off, this is your life, God bless your heart, and no one deserves unceasing pain and struggle.

and DONT walk out the door in a sleep state! (i am terribly grateful i can keep getting to the bathroom in deep sleep, some people just dont know when we are doing great.)


im sorry about your near-24-hour struggle and absence from your life. How long before you can get meds/attention?

call me if you can, Honey.


pat

Posted on Mar 16, 2009, 10:12 AM

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Re: ARRRRGHHHHH

by (Login mikenotar46)

Pat, this is with 30 mgs of adderall and 400 of provigil plus xyrem. Desoxyn would put an end to it but they still won't give it to me.
mike

Posted on Mar 17, 2009, 9:28 AM

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jumping cats!

by (Login patlittlejohn)
Moderators

Mike,

i thought by your experience lately, that you were still not able to get any meds!


desoxyn or SOMETHING is needed, we just cannot give up on living after coming this far.

take that soninlaw by the shoulders and say, "help me find a clinic or doctor who FREAKING CARES enough, I tell you I have a shadow of my life here!!!"


I tried to describe it to Jim as my LIFE clicking on and off without warning. never mind that it looks voluntary or restful, its not. i only get to LIVE part of the time that other people do.


God bless you always, Mike, you are so much in my prayers.


pat

Posted on Mar 17, 2009, 11:02 AM

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Getting Desoxyn

by (Login patlittlejohn)
Moderators

Mike,

i looked at your conversation from 1 year and 2 months ago, you were struggling to get your proper treatment, and i know you have been from doc to doc.

by mike n (Login mikenotar46)

Hi, The reasons I mentioned desoxsyn is that it worked well for me in the past and it was an answer to his "I don't know what to do with you".

I think my med problem is familiar to alot of people with n. They just don't work well on me. Don't try this at home but I can take 3 30 mg of Adderall XR at once and take a nap. Docs seem to think I should be flying off the walls with heart palpitations and all. I sleep.

On normal doses if I stay active I can stay awake but I have to struggle. I call my situation,Trapped in my adderall body.

I'm Awake enough most of the time to avoid crashing my head into my keyboard but all I can do is think about all the things I should be doing. No get up and go. Desoxyn kept me awake and let me (not forced me) to move which was a better quality of life. Hey, thats what we're all after in the end, Quality of life.


Posted on Jan 29, 2008, 12:01 AM



I could not agree with you more,

let me see what comes up on a search. forgive me, i have to search first for the state you moved to, is it Illinois?



I know they mean well, but getting your daughter and soninlaw on board would be so much help.



pat


Posted on Mar 17, 2009, 1:30 PM

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Oh see now this is what is so frustrating

by Theresa (no login)

I know I am new to all of this but this is what is so frustrating! No I am not rested yet! No I am not better yet! No I haven't been able to go back to work yet! Yes, the Dr does know what is wrong! Well can't the Dr just fix it? Well it isn't just that simple... Well aren't you taking your medicine? Didn't you get that machine? Aren't you using it? Yes yes yes!!!!! AAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHH Well I know someone else that has that and they work 8 hours every day--meaning of course that I am just lazy or faking or whatever. Oh my gosh no wonder I am depressed now!

Or like you said, they tell you to exercise or drink coffee or do this or do that. Oh gee if it is all that simple why didn't we all think of that. Surely it is that simple.

I am sorry but I am so tired I am getting really grouchy and I don't even want to be around anyone except my husband anymore. And there are days even he will say you just got up don't tell me you are tired already and I will just give him the LOOK and he will back down. He is mostly supportive and I sure that it gets old. I do not know how everyone copes with all of the comments and just the feeling of disapproval that you get.

Posted on Mar 17, 2009, 9:18 PM

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Re: Oh see now this is what is so frustrating

by (Login patlittlejohn)
Moderators


Teresa,

yep, you hit on it exactly, "COPE", and not with the symptoms and the agonizing struggle,

with the comments! what the merry freaking experts call "much improved by a supportive social structure." loved ones and strangers all hand off a comment so lightly, which no normal sane person would be offended by: "didnt you just take a nap??"

and because it is someone we trust, or someone at work who holds the power to mess with us, we just go wiggy.


ok, for the record: we would do ANYTHING to save our bacon, we have everything at stake, and yes "getting to bed ontime" occurred to us. we TRIED that, about 3000 bright ideas ago.

if they knew all the half-a$$ed voodoo ideas we have TRIED, secretly hoping they would work! i tell you i am slurping dayquil right now like he11 wouldnt have it, because i had the slightest improvement in clarity the other day.

take a deep breath, and softly say to your husband some of this: "i appreciate you. i depend on you, you are so enduring through this."

(all true, btw, we would be so scr3wed without them)

then "i realize that family and dear ones can only take this so long, but Honey, i am counting on you. what can i do (something i really CAN do) that will make it better? i will do what i can, and try what i am afraid of. i can never make this up to you,"

and sometimes i just grin big and say "i am SOOO worth it!"

This interpersonal stuff is a hump to get over with N, i tried isolating and being alone with it, hoping to spare anyone else, and it sucked.



Posted on Mar 18, 2009, 9:06 AM

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I smiled!

by Theresa (no login)

Let me just say Pat--you are such a blessing! I swear I am such a grouch lately so when I titled this "I smiled!" you honestly should not take that lightly!

As you all know this is all so stressful and so overwhelming especiall in the beginning. Add to that husband being laid off so no insurance, meds not working and my OCD and I am being mighty cranky lately.

So yes I smiled at your comment Pat and I thank you so much for that because I haven't been doing much smiling lately. I want you to know that I really do appreciate you!

Posted on Mar 18, 2009, 11:46 PM

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off topic

by phil (no login)



MIT engineers have created a kind of beltway that allows for the rapid transit of electrical energy through a well-known battery material, an advance that could usher in smaller, lighter batteries -- for cell phones and other devices -- that could recharge in seconds rather than hours.

The work could also allow for the quick recharging of batteries in electric cars,

Ceder believes the work could make it into the marketplace within two to three years.


Posted on Mar 12, 2009, 2:21 AM

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Re: off topic

by (Login patlittlejohn)
Moderators

I sure wish more visionaries could see future applications of such a discovery. ok, i wish it was me.

I once met the man that invented the process to make scotch tape. this was before the end of WWII, i think, and then while the rest of the world was busy mending books, visionaries were applying it to magnetic tape for recording, and ultimately data storage.

He changed the world, more than ultra tech inventions like microwaves (in my opinion), and believe me he is wealthy. collects and messes around with diamonds for a hobby.


btw, there was a consensus of the top ten inventions of the post industrial age. i agreed with everything but leaving out water heaters and including microwaves.

it was dumbed-down for the generic reader, but i agreed with it because it chose leaps in technology that changed the course of future innovation.

Posted on Mar 12, 2009, 9:01 AM

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Viosionary

by Bulldawg (no login)

Cell phone was invented over 60 years ago. Wonder what else is out there we don't know about do to big bussiness?

Posted on Mar 12, 2009, 1:22 PM

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Re: Viosionary

by (no login)

Lots of great visionaries are shut up though because some really great inventions turn around and hurt some other big buisness. Guy where Im from is a literal genius and found a way to run his whole house on solar and batteries and was paid off to shut up and free electricity for life and this was years ago. We put people on the moon, can launch nuclear weapons with pinpoint accuracy from space stations in space. Hell you can Google anywhere on Earth and see it online in minutes. Stuff is out there, problem is its expensive and people wont pay for it when what we got already works. Look at hybrid cars. By the time you save enough money to pay off the ten thousand extra you pay for the car the car is going to have 300,000 miles on it and thats based on $5 dollars a gallon. Oh and every 150,000 miles you have to replace the batteries and that is another $10,000 per replacement. So Ill stick to my SUV and motorcycle lol. My Atlanta Thrashers are now playing gotta watch guys. Later.

Posted on Mar 12, 2009, 6:46 PM

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Re Visionary

by (no login)

Oh Heck, They need to come up with another great sport, like football, or Nascar.

Posted on Mar 13, 2009, 12:05 AM

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Shuffle board or lawn bowling...

by (Login patlittlejohn)
Moderators

are probably the least exciting sports in the world...

Ya think that unisom would sponsor it and pay the big bucks?

i was such a huge fan of the red sox, and during playoffs i nodded off. arghh! my friends scolded me and made fun of me, but there you have it.


the Unisom Lawn Bowling World Finals, all proceeds going to narcolepsy research!

Posted on Mar 13, 2009, 1:27 PM

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Re: Shuffle board or lawn bowling...

by (no login)

LOL.. am sorry, Pat.. but just had to laugh at that one.. I can just see us now.. we do good and they have to drag us off the lawn.. lol. And the winner is.... asleep :p. Oh boy... LOL.. I can't stop laughing.. lol. Thank you for that.

Posted on Mar 13, 2009, 1:44 PM

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Re Shuffle board or lawn bowling...

by (no login)

Instead of the above how about (curling?) Its similar to both, but on Ice.
We may be able to stay awake longer. We might get hazard pay for frozen toosh

Posted on Mar 13, 2009, 3:33 PM

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Re: Re Shuffle board or lawn bowling...

by (no login)

Thats what hockey is for. Its fast, furious and has brutal hits. I love it lol. Driving 5 hours April 11 to see the Atlanta Thrashers play their season closer. Oh I cant wait lol.

Posted on Mar 13, 2009, 4:03 PM

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the few, the proud, the unconscious

by (Login patlittlejohn)
Moderators

serious set backs, i see

"Yawn Bowling" will have no fights with long sticks,
no frozen tooshies,

no possibility of Nike sponsorship ( still hoping for "nightie" sponsor)

and absolutely no one will drive 5 hours to see it.



    
This message has been edited by patlittlejohn on Mar 14, 2009 8:26 AM

Posted on Mar 14, 2009, 8:26 AM

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lol, tv, Under Armor

by (no login)

at least we have tv for those bad days huh lol. Hey cataplexic bowling. Set up foam pins and try to fall on them to get strikes. That might draw in Nike. Maybe Under Armor for added protection huh lol.

Posted on Mar 14, 2009, 12:07 PM

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