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Narcolepsy Message Board and Help Forum

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

I love your website

by (no login)

I just found your website this week. I love it!! It is so unreal for me to read see that so many people understand because they have been through it also. It seems like know matter how hard I try people just don't understand how I can be happy and full of energy when I leave work but fall asleep driving within minutes. I just wanted you to know that I appreciate everything you have available on your site.Thank You!!

Posted on Aug 11, 2010, 6:10 PM

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re: I love your website

by (no login)

Victoria

Welcome to our family. This is the best site for those of us with narcolepsy/cataplexy. Most of us have been here for years, there is a wealth of information and sharing of personal stories. You will be able to count on anyone of us for support, even if you are having a really bad day and just want to vent. We totally understand.

Welcome!!!!

Posted on Aug 11, 2010, 10:19 PM

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Welcome

by (Login patlittlejohn)
Moderators

And everything Pam said!

I remembered suddenly how it feels to devour posts, from people who understand!

Please feel free to ask questions, and anything you want to say. Long discussions have been SO fruitful for me, with a really impressive "panel of experts" and very dear friends.

For anyone who didnt know (or who forgets like I do!) our forum admin and guardian angel is Melody and she keeps us in contact, pays the light bill, runs off anyone who wants to take advantage of us.

I had no idea years ago that it would help so much, just finding the forum here day or night, who would understand, help all they possibly can, and even cheer each other along.


email me any time (clicking my name works) or littlejohnquilt at msn dot com.

pat

Posted on Aug 12, 2010, 7:01 AM

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Re: I love your website

by Melody (no login)

Thank you very much, Victoria, and welcome. I apologize for the slow response. I had traveled to see my sisters twin grandboys turn 3. By the way, when I say traveled.. I mean my wonderful sister and brother in law drive 3 hours to pick me up and when it's time for me to come home.. drive all the way again. I'm very blessed to have them.

Thanks again, Victoria. I hope you find the support you need here.

Posted on Aug 18, 2010, 3:37 PM

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Re: I love your website

by (Login patlittlejohn)
Moderators

Awesome happy occasion, Melody, and I am SO grateful that your sister includes you in her family occasions.

Posted on Aug 20, 2010, 8:39 AM

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cytokines

by (no login)

scientists are looking at new ways to treat rheumatoid arthritis. They are experimenting with new drugs, genetic therapies, and biologic agents that selectively block certain immune system activities associated with inflammation. In recent years, several biologic agents have been approved. These include etanercept (Enbrel) and infliximab (Remicade), which block a cytokine, or chemical messenger, called tumor necrosis factor (TNF); anakinra (Kineret), which blocks the cytokine interleukin-1 (IL-1); and abatacept (Orencia), which interferes with function of some cells such as T-lymphocytes. These cells are important in rheumatoid arthritis. Followup studies of biologics have shown that they not only relieve signs and symptoms of rheumatoid arthritis, but also block the joint destruction it causes. Studies for additional new drugs targeting other cytokines and inflammation pathways continue.
Cytokines are hormone like proteins that act as communicators to initiate disease fightig responses.

Posted on Aug 11, 2010, 5:23 AM

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Speaking of shows!

by cassk (no login)

I've heard that.. well I'll just copy and paste what I read hahah.>
"Thursday, August 19: Nightline co-anchor Cynthia McFadden explores the brain in love. She follows a remarkable story of love lost and found again after a traumatic brain injury. McFadden also talks to a man who is literally paralyzed by lovea peculiar brain condition that causes his body to shut down when he experiences feelings of love for his wife."
I guess ABC news is trying to do a new series thing on "The Brain and ..." and these two were put on "The Brain and Love" kinda deal. The woman who mentioned it is actually the wife mentioned above. They are skeptical on how the show sounds like they are trying to portray N, but they are hoping it goes well. To quote once again:
"I am bummed that they are referring to Narcolepsy as "a peculiar brain condition" (we tried to get them to understand that this affects 1 out of every 2-5000 individuals. And the way they advertise him as being "paralyzed by love" sounds kind of cheesey, but we are hoping that they get some accurate information out there."
Just though some of you guys might like to try to check it out! Hopefully its decent lol

Posted on Aug 10, 2010, 9:15 PM

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Re: Speaking of shows!

by (Login patlittlejohn)
Moderators

Oh my, I was kind of hoping the sensation-mongers would not "get ahold of" N: now it will be the talk of the town, how we "peculiar" narcoleptics are in the bedroom?

Gives new meaning to "fade to a passionate kiss; girl swoons."

Posted on Aug 11, 2010, 7:49 AM

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Possible help to school! (and work and life?)

by cassk (no login)

http://www.livescribe.com/en-us/
My disability's counsellor at school showed me one of these today, and I've been excited since. No more worrying about falling asleep during a lecture and missing a bunch of it! I can just record it, and listen to it later for parts that I wasn't as concious as I would've liked to have been. lol Bit pricey, but seems pretty cool.

Posted on Aug 10, 2010, 7:51 PM

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Re: Possible help to school! (and work and life?)

by Lynne (no login)

wow...it is very expensive...but you could also use an old fashioned tape recorder or one of those mini tape recorders that use answering machine tapes. not all the techno stuff, but still records your class. i used one in college.

Posted on Aug 10, 2010, 8:34 PM

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pricy

by cassk (no login)

It is a bit pricy, but as long as my specialist marks down that I am permanently disabled and not temporarily disabled, then I can apply for a grant that can get you like up to $8000 of equipment for your disability. So its a lot of hopefullys, but I have a bit of a chance of trying to get even just 200-300 for me to buy this pen. If not, my parents might try for it anyway, but it is a lot of money. I like how its also kinda discreet. You can play the recordings back through headphones, over the pen, or over your computer. Plus, not all professors like being recorded, so if no one else is allowed but they allow me through special conditions, I won't feel so out of place. Plus then I can just click that sign on the piece of paper for when I want to record and not, Plus, I can just click on the paper for whatever part of the lecture I need to go back to! happy.gifhappy.gif ... I'm still a little excited on this idea lol.

Posted on Aug 10, 2010, 8:51 PM

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:)

by cassk (no login)

http://gizmodo.com/386809/review-livescribe-pulse-digital-penrecorder-verdict-its-good-for-notetakers

Posted on Aug 10, 2010, 8:58 PM

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organic/vegan

by Lynne (no login)

i have been eating all organic for several months and vegan for about 7 weeks. i watched the movie 'the beautiful truth.' an organic/all vegan diet has been known to cure lots of diseases, including cancer. i can totally see how it can cure diabetes, high blood pressure, heart issues, but cancer...hopefully so.

...and IF SO, then it should be able to cure such a little thing as narcolepsy right? well i am going forward, and will let you all know when i am cured. LOL...but i do suggest that no one hold their breath-without consulting your doctor of course.

i am also picturing in my mind that i go to my next dr. appointment in Oct. stating that i am cured...and see his reaction LOL...should be fun, if not anything else!

Posted on Aug 10, 2010, 7:45 PM

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No Chocolate

by phil (no login)

Honey - AVOID - Increases production of cytokines TNF-a and IL-6. (Pubmed PMID12824009)

Chocolate - AVOID - Increases production of cytokines TNF-a and IL-6. (Pubmed PMID 12885154, PMID 10917928)

Micro Algae (Chlorella and Spirulina) - AVOID - Increases production of cytokine TNF-a. (Pubmed PMID 11731916)

Kimchi - AVOID - Increases production of cytokines TNF-a and IL-6. (Pubmed PMID15630182)

Echinacea - AVOID - Increases production of cytokines TNF-a and IL-6.

Elderberry juice (Sambucal) - AVOID - Increases production of cytokines TNF-a and IL-6.

Posted on Aug 10, 2010, 2:51 PM

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Re: No Chocolate

by Lynne (no login)

sorry, i don't understand...are these tnf's and il's something we don't want?

Posted on Aug 10, 2010, 3:14 PM

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start here

by phil (no login)

http://en.wikipedia.org/wiki/Sickness_behavior

tnf and IL-6 are elevated in narcolepsy
google narcolepsy tnf
google narcolepsy IL-6

it is hard for your system to have constant inflamation

there are foods that lower TNF andIL-6

***IL-6***REDUCED BY
celery green pepers
lose weight
Resveratrol
Magnolol
vit D
DHEA
ACE inhibitors attenuate IL-6 expression
estrogen
cortisone
St Johns Wort (Hypericum) - Very effective antiviral. Also decreases the production of the cytokine IL-6. Hypericum is an extract from St Johns Wort. There have been some very successful field trials in commercial flocks infected with H5N1 in Vietnam. (Pubmed PMID 7857513, 11518071, 11362353, 7857513, 11518071)



***TNFa***REDUCED BY
Vitamin E - Immune booster. Also decreases the production of the cytokine TNF-a. (Pubmed PMID 155882360, 10929076
lose weight
green tea,
curcumin(turmeric)When combined with Piperine found in black pepper the absorption is increased with no adverse effects.
quercetin(onions garlic)
resveratrol(some redwine,muscadine grapes,raisins peanuts etc)
N-acetylcysteine
Tea tree Steam Inhalation - Reduces the cytokine TNF-a. Add 2 drops of tea tree oil in a bowl of steaming water. Cover head with a towel and inhale for 5 to 10 minutes. Relieves congestion and fights infection
Cats Claw (Uncaria tomentosa) - Decreases the production of the cytokine TNF-a. Also boosts immune system. The number of white blood cells was significantly increased during treatment. No toxicity was noted




Posted on Aug 11, 2010, 11:56 AM

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Re: start here

by Melody (no login)

Have I told you lately, Phil, how much you are appreciated? If I haven't, shame on me.. you are wonderful. Thanks so much for all you do.



    
This message has been edited by cataplexic on Aug 18, 2010 3:40 PM

Posted on Aug 18, 2010, 3:39 PM

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Happy Birthday, Lynne..

by Melody (no login)

...have fun and be happy happy.gif

Posted on Aug 10, 2010, 12:06 AM

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Re: Happy Birthday, Lynne..

by (Login patlittlejohn)
Moderators

Happy birthday!

Posted on Aug 10, 2010, 9:59 AM

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Re: Happy Birthday, Lynne..

by Lynne (no login)

OMG thanks guys!

Posted on Aug 10, 2010, 3:12 PM

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this is interesting.....

by (no login)

one of the guys that works for the Corps of Engineers at the park we are hosting, has just been dx with narcolepsy, he is 55, and now on provigil. Bob and I have known him for about six years, he suffers from Hep C, has gone through all the interfuron treatments years ago. The treatments were ineffective. He is quite healthy otherwise and hopes to retire in a couple more years. A couple years ago he began to have EDS. Sleep study showed no apnea, daytime test narcolepsy. He said he previously suffered from insomnia. His internist says that the hep C has triggered the narcolepsy. He has other symptoms of N, but not cataplexy. Since hep C is a virus, I wonder if it could also be a possible trigger?

Posted on Aug 9, 2010, 12:27 PM

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Re: this is interesting.....

by (Login patlittlejohn)
Moderators

Seems very likely. When he says he previously had insomnia, could it have been INS and other symptoms, and they just dont go back and rewrite our mis-diagnoses from the past?

Posted on Aug 10, 2010, 9:58 AM

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granddaughters wedding picture

by (no login)

This is just a little brag session on my grand daughters wedding. She just recieved her wedding pictures on disk, so she emailed some to me, I just wanted to share with some of my best friends, all of you on this site. Check it out on our photo album. She is our oldest grand daughter, which really makes me feel old, just thinking that in a few years (hopefully) I could be a great grand mother!!!OMG!!!

Posted on Aug 8, 2010, 11:34 PM

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Re;wedding picture

by (no login)

One proud, beautiful young woman + one proud, wonderful grand mother!

A woman from China beat your age by a mile. A mother at age 8, a grandma at age 16, and a great grandma at 24. That was like 800 years ago.

Posted on Aug 9, 2010, 12:02 AM

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re;

by (no login)

Thank you, I am really proud of her. She is from Portland, a true Oregonian, but her new life with husband begins in Boise, Id. He has a teaching job there and she begins nursing school this fall. I love it, because we go through Boise going to and coming from Arizona.

Posted on Aug 9, 2010, 4:04 AM

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Re;

by (no login)

Pam, my Daughter is a nurse in the Oncology Dept. at Dornbeckers. She is on vacation for two more weeks. If your grand daughter has any interests along those lines, I am sure Rae would be happy to help. If you think it might help, send me an E-mail and I will send her contact information. We need every nurse we can get who is aware of N. Who knows it could be a good contact for her after she graduates.
GEM

Posted on Aug 9, 2010, 6:53 AM

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Mazel Tov!

by (Login patlittlejohn)
Moderators

You will be the most wonderful G-Grandmother, because they will all be able to look at you and say, "Thank you for gorgeous genes!"

Posted on Aug 9, 2010, 8:00 AM

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abtibiotic for hypersomnia ?

by phil (no login)

this is wierd, erythromyacin knock off antibiotic for hypersomnia (not narcolepsy)




http://www.clinicaltrials.gov/ct2/show/NCT01146600?term=narcolepsy&rank=16

Posted on Aug 8, 2010, 11:12 AM

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re: antibiotic for hypersomnia?

by (no login)

You're right this is wierd! I wonder how they even thought of using an anti-biotic?
I can't imagine, even if this worked, that a person would continually take an anti-biotic. You might as well be on chemo indefinately. Just think of the damage it would do to your immune system. I never take anti-biotics unless absolutely necessary. Do you know that when taking anti-biotics it takes your stomach 18 months to reproduce the good bacteria it needs to help in digestion? I would seriously reconsider this treatment if their little experiment pans out.

Posted on Aug 8, 2010, 11:25 PM

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Seems disastrous

by (Login patlittlejohn)
Moderators

People really dont understand anti-biotics. Of course the researchers do, and realize it would be like being on chemo constantly.

I know a drug-rep's daughter who took tetracycline THROUGHOUT highschool (for acne)... on her own because she figured out it worked. I does not take an expert to imagine what that did to her whole system.

Posted on Aug 9, 2010, 7:57 AM

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We want to help Aug. 4 (yeah sure)

by (no login)

This group is out to make money. They may be able to help with some people but to place this on a N. site is an insult.
To think that we can be helped by an intervention is as helpful as "if you would sleep at night, you would not sleep at work. "Don't be so lazy" etc.
If they profess to help, let them know what they are talking about.
If they want to help let them do a documentary from the view of a Narcoleptic.
Let the world see what we see, and the abuse we can get from those who "care"
A Narcoleptic can be funny, but Narcolepsy is no laughing matter!

I may be looking at this in the wrong way. What are your views?

This may actually get back to them. Let them see what we think!

Ted Minahen
Creswell, Oregon

Posted on Aug 8, 2010, 10:38 AM

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re: We want to help Aug. 4 (yeah sure)

by (no login)

I was surprised that post remained on our message board. If I thought that being hypnotized would cure my narcolepsy I'm sure we'd all be in that line years ago. It may help with smoking and other HABITS, but narcolepsy, not a chance. Sounds like some made for TV Hollywood scam. We may have narcolepsy, but we're not STUPID!!!!!! This qualifies under our heading of dumbasses!

Posted on Aug 8, 2010, 11:14 PM

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Re: re: We want to help Aug. 4 (yeah sure)

by Lynne (no login)

i didn't see anything about hypnotizing...but it does look like a scam. there is a real show on A&E called intervention. but it is mostly about addictions and no one is hypnotized. either way, that is not the point. we have had many scam artists come on the web site and we can all tell what they are LOL. they think we are idiots.

Posted on Aug 9, 2010, 6:48 AM

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Re; re

by GEM (no login)

What part of "world-renowned hypnotherapist" don't you get

Posted on Aug 9, 2010, 7:00 AM

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Re: We want to help Aug. 4 (yeah sure)

by ev (no login)

I read and felt the same about that post.
I thought i'd let someone else get at them about it before i do.
Bit insulted, YES!

Posted on Aug 9, 2010, 4:22 AM

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I knew I could count on the family

by (Login patlittlejohn)
Moderators

To rip into that. I also thought it was up to Melody to crack that whip first, but GEM is right: hypnoTHERAPY plus disgusting exploitation... Im sure we could be counted on for some juicy humiliating displays.

Thank you all for being the greatest.

Posted on Aug 9, 2010, 7:53 AM

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Who Knows.

by cassk (no login)

I'm not sure what I think about this, although I don't mind watching Intervention or Obsessed and shows like that. I think they are there to help the people on it, to encourage others to get help, or tell when someone needs to get help and such. And yes, its so they make money. What isn't these days? But they could also be making that money in another show that doesn't help anyone?
I don't think this show's point is to "cure" our Narcolepsy, or things like it. But even shows like Obsessed tend to make a point of saying that the problem, whether it is OCD or whatever, is Still There. They just help to try to minimize the symptoms and make it so they can continue life as normally and healthily as possible.
So while I don't know how exactly this show's stuff would help sleeping disorders, they might also be trying to help people to make the best of what they have. And maybe they're trying to just screw us over, who knows. But I guess we'll see.
There are people out there, though, that are not dealing with this well. You know how I lost my license? Because I put it off too long. Because I'm too scared to even try the highway. You know why I now get leftovers for my classes? Because I avoided even just signing up for registration for school as long as possible, because I don't need to be failing at anything else right now. It's been one year now since I found out that I might never get better and I don't know how to help myself. But I don't need a show to help me. I have a great support system and I'll keep trying until I figure it out. And clearly I realize what's wrong, I'm just having trouble getting my butt up to actually help myself.
But you all have said repeatedly how much we all go through many of the same type of things. So maybe this show could help someone else deal with their problems and deal with this stupid N better. And maybe the show will fail at portraying it right. But at least they are trying to show it, and if they show it wrong, well then I think its up to us to tell them. If you think the show should be done a bit different, they will only know if you tell them. If you don't think it will help, and it will only make us look dumb, tell them. Maybe they can do something, even if it's nothing to do with this particular show, that will get the word out more about Narcolepsy.
And we need that.

Posted on Aug 9, 2010, 1:38 PM

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Weblinks

by cassk (no login)

Info on Hypnotherapy
http://www.umm.edu/altmed/articles/hypnotherapy-000353.htm
Ryan Seacrest Productions Site
http://www.ryanseacrest.com/blog/news/now-casting-new-show-seeks-to-end-liferuining-compulsions--phobias/

Posted on Aug 9, 2010, 1:40 PM

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Re: Weblinks

by (Login patlittlejohn)
Moderators

Thanks for the extra information, Cass.

I did really wish it was a more personal, or more sincere invitation than "hello!"


For instance, if Stanford or any of the researchers like Mayo or Johns Hopkins were to invite one or all of us: they would send mail to us, the kind with a stamp. Just trying to keep real life perspective.

I thought this was just a cattle call.

God bless you with the classes and so many important things, deadlines, and your license. Sometimes I had short spells when I could not take control and move forward, then got back to (more) normal.

Posted on Aug 10, 2010, 9:56 AM

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Re: Weblinks

by cassk (no login)

Understandable, I'm still honestly not sure of what I feel on it. I was just frustrated plus I have a tendency to trying to name off as many pros and cons to things as possible, particularly whatever is opposite of what someone says lol:P Everyone seemed set right against it, so I did my usual ranting.. lol Idk.
I do admit though, that before these posts started, right after they put up their ad, I went to their site to check it out a bit more, and was quite disappointed that it didn't say much different than what they put on here. So I had sent them a message, saying stuff on how I liked their other shows, but I'm not sure how this one would help sleep disorders and so on. I was hoping that they could reply with whatever intentions they had with the show, or some sort of reason for why they would post it on here. I haven't heard anything so I guess they are either really busy or they don't konw either lol:P
I am curious to see the show though, so we'll see how it goes.

Posted on Aug 10, 2010, 9:11 PM

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driver's license

by cassk (no login)

I lost my license as of July 28th. I was one of the first of my main group of friends in high school to get it, and I hadn't even wanted it then, I just got it because I figured it would be convenient. It definetly did come in handy, and now I have no idea how I'm supposed to not drive, ever. I plan to go back for it once I can get my cataplexy in more control, but I'm not sure what the steps to do that is? I'll ask the driving place another day, but I was curious if anyone here knows if I'd have to go through all the written tests, driving tests, then special driving tests again? I didn't even take my special driving test, which is why my license is gone. I put it off, too scared to try the highway.. last thing I'd want would be to get tired, and have a cataplexy attack..sad.gif
Now off I go to find the cab number to have a way to work:(

Posted on Aug 6, 2010, 1:13 PM

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Re: driver's license

by Lynne (no login)

sorry...wow, i didn't know they could take it away just like that without even investigating your condition or getting paperwork from your doctor or speaking to your doctor. if they did, the doctor may have been able to say that you can drive short distances or to work/store/drug store only. like a restricted license. i never heard of them just taking it off of you for no reason.

Posted on Aug 6, 2010, 6:03 PM

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Re: driver's license

by (no login)

States differ on their procedures. I had to go through a medical review board and had to file an appeal in the court to have a judge rule. The judge dismissed the case but it was not done appropriately so my license was not clear. It was not suspended but it showed that it wasn't clear. Therefore, the 2nd time in my life I got stopped, I was ticketed for driving while license suspended. Luckily, I had the court order with me so they did not take me to jail. If it had happened 11 months before, the cop would have had no choice but to take me to jail. It took months to get it cleared up and now I have additional restrictions such as no driving emergency vehicles, cabs, etc. When it is time to renew my license, I will have to go back through medical review board. Go figure!

Posted on Aug 6, 2010, 6:55 PM

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license

by cassk (no login)

I filled out paperwork and such with my specialist but he had to put that my cataplexy wasn't stable yet and that I may be trying new meds for it soon. I got a letter a while back that I had a month and a half to book and do the test in, or my license was gone by that date. I still have the license, I'm just only using it as an id now..

Posted on Aug 6, 2010, 10:49 PM

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Re; driver's license

by (no login)

As I understand, each state has its own set of rules. In Oregon, if your cataplxy is not under control then the Dr. is required to report your condition. This results in loss of license.
With the number of accidents resulting in loss of life, due to (falling asleep at the wheel). You could be liable for Driving under the influence.
Every person with N. should quietly find out what the rules of their State are. Also any other state that they frequently drive in.
Some with N. consider this an outrage! But for some of us to drive, it is about the same as driving drunk. Sooner or later it may catch us.

Posted on Aug 7, 2010, 4:31 AM

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Re: Re; driver's license

by Lynne (no login)

well i just heard of someone in GA who had a rx drug, in the container, in her purse while driving. it was something for ADD/ADHD...the bottle says something like take precaution while driving. it does not say 'do not drive while taking this medication.' apparently according to the law here in GA, you are still under the influence and will get a DUI for a rx drug if it says ANYTHING about driving. i thought that was such BS because ADD/ADHD drugs are to stabalize those people, it does not even impair their driving, perhaps makes it better because they can concentrate better.

Posted on Aug 7, 2010, 7:50 AM

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each state

by cassk (no login)

I don't live in a state lol:) But I will definetly check out my province's rules. .. eventually. Either way my letter states that my license was gone as of July 28th:( I've avoided it this long, a little longer couldn't hurt me much at this point.

Posted on Aug 7, 2010, 11:19 AM

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re: driver's license

by (no login)

I haven't driven for several years now and believe me I know the frustration and loss of independence. It eventually comes when we get older, but having to depend on family, friends or public transportation can be a real pain, especially public transportation, because if you fall asleep on the bus or rail you miss your stop.

After going off the road several times I had to admit to myself that I couldn't keep myself wake and alert. If you are on stimulants to stay awake and your sleep doctor feels comfortable with that, he can write to the transportation department and state that you can drive. However the cataplexy is a whole other story. Like myself I had to give up riding my bike, because of my cataplexy attacks, because I had a rabbit dart out in front of me while riding a trail and startled me and down I went. My fear is that when driving and having a cataplexy attack you are conscious but paralysed, it could only last a second, but that's all it takes to have an accident. That feeling of knowing you have no control and your hands are at your side and your head on your chest and there is nothing you can do about it is terrifying to me.
My experience with anti-depressants for the cataplexy didn't make any difference, except make me sleepy. There isn't much to help with the cataplexy, especially if you are older, like myself, and your cataplexy is severe.

Posted on Aug 8, 2010, 8:33 AM

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new genes

by phil (no login)

An approach based on a genome-wide association study reveals candidate loci for narcolepsy.

Shimada M, Miyagawa T, Kawashima M, Tanaka S, Honda Y, Honda M, Tokunaga K.

Department of Human Genetics, Graduate School of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-0033, Japan.

Narcolepsy is a sleep disorder characterized by excessive daytime sleepiness, cataplexy, and a pathological manifestation of rapid eye movement during sleep. Narcoleptic pathogenesis is triggered by both genetic and environmental factors. Recently, development of genome-wide association studies (GWAS) has identified new genetic factors, with many more susceptibility genes yet to be elucidated. Using a new approach that consists of a combination of GWAS and an extensive database search for candidate genes, we picked up 202 candidate genes and performed a replication study in 222 narcoleptic patients and 380 controls. Statistical analysis indicated that six genes, NFATC2, SCP2, CACNA1C, TCRA, POLE, and FAM3D, were associated with narcolepsy (P
PMID: 20677014

Posted on Aug 4, 2010, 12:50 PM

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re: new genes

by (no login)

This is all great that they are finding these genes associated with narcolepsy.....but we all know we have the disorder....I just would like to here they are on a break through for a cure.

My cataplexy just seems to be getting worse and worse and lasting for more than just a few seconds. I was in our truck and Bob was talking to a guy about cars and I was so sleepy just couldn't stay awake. I had a series of cataplexy attacks, brief ones, then I had one that lasted a couple two or three minutes. My chin was on my chest, making it difficult to breath, my brain began to panic, as I sat there paralysed. That really freaked me out. I'm sure this stranger thought I was a freak or something.


Posted on Aug 4, 2010, 10:21 PM

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Re: Pam

by (no login)

As far as genes go I wear Lee's, Levies are not quite as comfortable. Neither help w/ narcolepsy since I am typing this at 4:31 AM, been up since 2:30, Just another sleepless night. I bought opaque "eye mask" and it helps as the sun comes up (along w/ a little help from Meds)....Charlie Z

Posted on Aug 6, 2010, 1:36 AM

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another question

by (no login)

i had another question: are headaches commonly associated with narcolepsy? i've had these headaches like 2 or 3 times a week for the past 3 or 4 years. they aren't migraines, they are just this dull throbbing at the front of my head. they usually come on in the later evenings and last until i go to bed. the strange thing about them is that it takes 4 ib-profin to even put a dent in them.

Posted on Aug 3, 2010, 12:47 PM

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Headaches, $%## yes I get headaches

by Bulldawg (no login)

Yes I get the same headaches just about on the same schedule. I don't take the ibuprofen because 4 ibuprofen is like a tranquilizer and I'm out for hours. If I can lay down soon enough with my cpap on I can "flip" the headache and make it go away. Do you have sleep apnea? Do you use a saline nose spray? I know this doesn't help any and sounds a little crazy but I'm excited that somebody else gets headaches so we can compare notes. Thank you for sharing.






Posted on Aug 3, 2010, 5:07 PM

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headaches/jaw pain

by (no login)

About 4 months ago when my Dr changed me from Provigil to Nuvigil I started getting headaches in the afternoon lasting late into the night. I then realized that I am also clinching my jaws so this could have some to do with it. The Dr and Pharmacist insist that it is not the medicine. At first, I did without the med a couple of days and did not get the same pains but now if I skip a dose, I still get the same pains so.....
I continue to pray for all those afflicted with what we deal with on a daily basis.

Posted on Aug 3, 2010, 7:16 PM

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re: headaches

by (no login)

I don't usually get headaches, but one of the side effects of narcolepsy, seems to be frequent headaches, according to research.

When I was taking ritalin, I had headaches and jaw pain from clinching my teeth, the same when I was on provigil. But now I take the nuvigil and don't have any other side effects.

I think the drugs maybe the biggest culprit. My sleep doc says they should go away after your body adjusts to the meds, but if not, take 400 mg of ibuprophen and 500 mg of tylenol with/or before you take the provigil or nuvigil, she says that should help.

Posted on Aug 4, 2010, 12:52 AM

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Headaches

by (no login)

Thank you for the information. I will talk to my Dr about that.

Posted on Aug 6, 2010, 6:47 PM

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Re: Headaches, $%## yes I get headaches

by (no login)

i don't have sleep apnea, but i'm pretty sure that i'm narcoleptic. right now i don't take any meds (besides ibuprofen) so i'm pretty sure it's not related to that, but there are other possibilities...my headaches could be related to the massive amounts of sugar and caffeine that i intake (that's how i stay awake during the day)or i could be dehydrated or it could be the insane amount of really hyper techno i listen to (it keeps me wide awake but sometimes it makes me feel like i'm on speed or something). i don't know.

Posted on Aug 4, 2010, 1:01 PM

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headaches

by cassk (no login)

I've always gotten headaches, but every once in a while they get weird and worse. It's like I have to focus away with it, because I can let myself just feel it, and then its like it starts to fade over my whole head and I start to panic that I won't be able to push it away. Sounds weird but.. I don't really even know how to explain it.. It's worse when I'm tired, and when I eat more sugar than usual. I've been on the same dosage of meds since.. last November? and the headaches are getting worse. Then again, so is the cataplexy, and my headaches are also usually worse when the cataplexy is worse.
The other evening was the worst. Usually the headaches fade after a little while, and I might take a tylenol if I feel I really need to (I can't take ibuprofen, hard on the stomach, causes painnn). Sometimes with these headaches I also feel like my heart is just pounding through my chest, to the point where I can hear it in my head sometimes. Well that night I felt like my head was racing, I was dizzy, and this headache was brutal. My chest was pounding, and my head felt every piece of it, like it was pulsing with it. My boyfriend checked my pulse and said it seemed fine, so I just layed on the couch hoping it would fade because it hurt just ridiculously. Finally I gave in and my boyfriend went to grab me a tylenol, and I just crawled in bed, hoping unconciousness would solve it a little.


Posted on Aug 6, 2010, 1:09 PM

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Why is it that those who should care the most hurt you most?

by (no login)

I had a narcolepsy/cataplexy attack last night as we were unloading from vacation.
My boyfriend of 4-1/2 year (friend for many more years than that) evidently picked me up and put me on the couch and went on with unloading my stuff so he could go on home. When I came to, I got up, against the demands of my 15yo to go and help finish bringing my stuff in. He commented "wow...that was a fast recovery" I took it as him insinuating that I was faking, we had words and I told him to get out of my house (he was leaving anyway to get home and unpack). Then my 15yo had disappeared. I called him to see if he knew where she was and he said he had gone outside. Called me back a few minutes later to tell me his little boy said she went to the back yard. I thought she was mad at me for refusing to stay laying down. So tonight she was showing me bruises on her knuckles. Turns out my boyfriend point blank told her that he thinks I am faking my illness so she was really mad and went to the cabin and punched the door.

How does one deal with something like this? I am completely lost and the hurt is unimaginable.

Posted on Aug 2, 2010, 12:39 AM

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re:

by (no login)

I relate to this, I have cataplexy really bad. My mom and brother have been here for the last four days visiting from Portland and Belgium and when I have company for any length of time I'm on the floor more than I am on my feet. You try to do 'to much', your regular 'nap' times go out the window, and your company is face to face with the everyday life of a narcoleptic and that brings the invisible disorder into reality for them. My mom who is 85, still doesn't comprehend what the disorder entails, she thinks aspirin and peroxide fix just about anything, so my husband Bob stays standing behind me with his arms wrapped around under my arm pits, so if I do have a C attack he at least i holding me up so I don't hurt myself. You and I both know that stress and being really sleepy from changes in our routine from the norm, like being on vacation, will bring on our attacks. Mine only last a few seconds, but I will have them one right after another when I'm really tired.
I'm so sorry that after all those years your boyfriend would say something like that to you and we know that faking is not in our vocabulary, if anything we try to hide it the best we can. Those kind of remarks go back to insinuating laziness, lack of drive and just trying to get out of doing something, which we all know are comments we've heard years before. Maybe your boyfriend needs a little more education about narcolepsy. Have you ever gone onto Youtube.com and watched some of the videos of cataplexy attacks. He should watch some of those, maybe he will be enlightened.
Just know that we all understand and support YOU. Get some much need rest, as I will be doing the next couple of days, my family left early this morning. Time to recoupe!


Posted on Aug 2, 2010, 7:01 AM

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Thank you

by (no login)

Thank you Pam for your words.
I am still just numb over his reaction.
I just cannot believe that the one's you love could actually be so hurtful.
They honestly do not have a real clue as to what we deal with because we force ourselves to be strong.
On a good day, we are still worse off then when they would be cowered in bed or a corner because they could not cope.
Of course the stress from it all is just making the symptoms that much worse.
It's funny how we can be so strong when we are in so much pain but yet cannot cope with heartbreak.
This too shall pass. I just have to decide if I can every feel the same way again because he definitely is not the man that I thought he was after all these years.

Again, Thank you for your words...as simple as it might seem, it helps tremendously.

Posted on Aug 3, 2010, 7:13 PM

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RE: Grumpy

by (no login)

I have run into this w/ new friends... Some people will never get it... There loss. I stopped explaining years ago... Are you really "Grumpy"?...Charlie Z

Posted on Aug 6, 2010, 1:27 AM

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Grumpy?

by (no login)

Well, I can be grumpy sometimes but Grumpy comes from my favorite Care Bear, Grumpy Bear, his rain cloud with hearts symbolized that behind the cloud their is a heart of gold. So.....
.
And now my BF of 4-1/2 years, best friend of more than 8 years, who used to talk about forever, has decided that he has to do some more thinking to decide if he wants to stay together. You can only imagine what the stress from that is doing to me. It is unimaginable. The pain in not knowing is worse than someone dying.

Posted on Aug 6, 2010, 6:45 PM

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