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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.

Xyrem eating

by Masreck (no login)

Does anyone else have a problem of having to eat everything in the fridge while on Xyrem

Posted on Apr 8, 2009, 8:25 AM

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Re: Xyrem eating

by Nikki (no login)

I had the opposite problem. Now that I can't get Xyrem, I am eating so much more at night.

Try to keep in your mind that you aren't supposed to eat within two hours before your first dosage, in order for the Xyrem to work at its best. That is what got me to not eat at night when I was on it, because I wanted it to work so badly.

Then when you go to take the second dose in the middle of the night, have a drink already by your bed and if you have to get up, only go to the bathroom-not the kitchen.

Posted on Apr 8, 2009, 9:11 AM

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Re: Xyrem eating

by Scarlet (no login)

I get extreme morning hunger as a result of not eating after 7pm. If I don't eat by 9am my sugar levels drop too low.


Posted on Apr 8, 2009, 11:37 AM

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Re: Xyrem eating

by Nikki (no login)

You could leave a small glass of something sweet (Gatorade, juice, etc.) by your bedside to drink directly after you take your second dose of Xyrem. That is all you need to raise your blood sugar. My mother kept one of those little cans of orange juice in her purse all the time because she had the type of diabetes where your sugar goes too low.

Posted on Apr 8, 2009, 3:12 PM

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...also

by Nikki (no login)

Also, why are you going to bed so early (9 pm) and having trouble eating breakfast before 9 am? I just say because you said you weren't eating after 7 pm. We don't need MORE sleep, we just need 7-8 hrs. of the correct sleep.

Posted on Apr 8, 2009, 3:15 PM

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Re: ...also

by Scarlet (no login)

I don't eat after 7 because I have a sluggish digestive track so I wait three hours after eating to take xyrem. I take my first dose @ 10pm and my second dose @ 1:30am.
I have to be out of bed no later than 6:30 - so taking it @ 1:30 allows me some time to hit snooze on the alarm if I need to.

I cannot eat within 2 hours of taking thyroid meds( i have no thyroid) so breakfast is usually put off.

Posted on Apr 9, 2009, 6:41 AM

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Re: ...also

by Nikki (no login)

Oh I see. Well, definiately try the juice or gatorade/powerade in the morning or at your second dose.

Posted on Apr 10, 2009, 8:42 AM

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Xtreme eating

by Bulldawg (no login)

Who said you have to be on Xyrem to want to eat everything in the fridge. The shadow of my a$% already weighs 15 pounds. oh well, Hey I just got off the phone with my sister. I called to talk to her about being sent for another visit to the company Doctor. Visit number 4. My sister wanted to klnow if I had researched to see if there were any herbs out there to take that would cure my C. Had I thought about losing some weigh, that would probably cure my sleep apnea, narcolepsy, and my cataplexy!!

Got to go, I'm off to the bathroom with a whole bunch of laxetives to S^%$ myself to a better me!!!

Chow

Posted on Apr 8, 2009, 6:55 PM

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Re: Xtreme eating

by Nikki (no login)

I believe it. I gained a lot of weight right when all these symptoms started, I was a tiny kid and teen. I really don't think it has anything to do with what I eat because I don't eat a lot. I don't eat as much as my 7 yr old child does.

This is what I ate today for example:
egg beaters and coffee for breakfast
peanut butter sandwich on whole wheat and some cauliflower for lunch
can of chef boy are dee a little while ago

Thats it. Some days I eat less because I am not hungry during the day. I get more hungry at night, but I have been trying to not eat at night.

I drink water all day, and once in a while a diet Dr. Pepper. WHY am I not losing weight?? That is about 1000 calories up there for a whole day. Supposedly that is not even enough to support someone half my size.

Posted on Apr 8, 2009, 7:22 PM

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Re: Xtreme eating

by (Login paulqueen)

I think having the N and C going on, overtime, has totally deadened the metabolism. that is the only thing that seems to make sense as far as the weight loss.. at least through the thinking i've done on it. if anyone else has theories im sure we'd all love to hear em.

im going on a fast for 8 days (2 first days and 2 last days soup/protein drinks allowed to come on and off the fast easier) and doing the dr. natura colon cleanse thing starting in a week...assuming it shows up by the time im done with the fast.

the above drastic diet change was prompted from monday. i had a sleep test and ended up sticking around and playing a few songs for the nurses in exchange for some coffee. okay, i wouldve done it anyway since they were ladies, but anyhow, one of em was taking pictures and sent em to me on email.
i got em today and wow, i am like a bloated fat elvis twilight zone version of myself. it is totally different seeing a picture of yourself compared to looking in the mirror. i couldnt believe it. ive always known the past 18 months that ive been obscenely overweight for my usual self, but god am, i didnt know i looked that bad.

well, here's to drinking tea and water and fresh juiced fruit for the next 4 days... woo..hoo..



Posted on Apr 8, 2009, 10:11 PM

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Re: Xtreme eating

by (Login patlittlejohn)
Moderators

yet we have some forum posters who get dreadfully thin, and we are talking worried-about-it weight loss.

what the heck happens to our metabolism?

i eat more correctly than i have for 30 years, and this seems to be it for me. when i was working out hard, i wore the clothes i am wearing now, which i dont understand.

still hanging onto black to-die-for jeans with brass zippers at the ankles,

i bought them after a few bad months in 2003, and never could butt on them again.

Posted on Apr 9, 2009, 4:39 PM

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Re: Xtreme eating

by (Login paulqueen)

yea, id much rather worry bout not eating enough than eating too much. call me vain or whatev, but its easier to gain weight than lose it in my experience.

ive never really had to try too hard to lose weight either, which makes this just a pain in the az

so far the fasting is going... well.. horribly. not to say ive ate anything but its just AHHHHHHHHHHHHHHHHHHHHHHHHHHHH i just want food ! GIMME FOOD!!! tomorrow my ketones should be kicked in and i wont worry bout it that much i hope... we'll see..

Posted on Apr 9, 2009, 7:13 PM

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Re: Xtreme eating

by (Login patlittlejohn)
Moderators

oooooooooh i just wanted to throw something!

your sister STILL thinks that way, im just furious.

of course im still laughing my 15 pounder off.

Posted on Apr 9, 2009, 4:29 PM

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Re: Xtreme eating

by Nikki (no login)

Well I believe we could all do a little better if we ate healthier. Definately not a cure, but an all-in-all health improvement. These are foods that are not good for us but most of us eat every day...

white flour products
red and yellow food dyes
hydrogenized soybean oil

These things are in practically EVERYTHING and they are not good for any of us. I have tried my best to not eat these things but especially the dyes and they are in almost everything you pick up.



Posted on Apr 10, 2009, 6:46 AM

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Hey Steve

by Bulldawg (no login)

Just thought you would get a big kick out of knowing they sent me to another doctor. The colon/butt surgen. His name is Dr. Kracklin. No Kidding.

Posted on Apr 8, 2009, 4:08 AM

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LOL - here's another one

by Scarlet (no login)

- My gynecologist's name is Dr. Whang !

Posted on Apr 8, 2009, 5:54 AM

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LOL

by (Login patlittlejohn)
Moderators

seriously,


LOL.

Local attorney last name "Duhh".

still think Dr. Krack wins

Posted on Apr 8, 2009, 7:10 AM

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Whatcha think?

by (no login)

I wrote this several months ago. I never thought to share it but I wonder what you think of it? Titled Narcolepsy

Seven random syllables
While I am lost in fog
Mundane blues and orange blurring toward the center
Floating, running, screaming just looking for an out
Intermixed with laughter and honesty at the core
Changing images and careless melodies
Buzzing, rumbling and sobbing
Drowning in a sea of confusion
Wasting the hours of a lifetime in the array of oblivion
Cursing with embarrassment
And weeping with no sense of hope in the cause
Fluttering but failing to fly
Swimming but failing to float
Crashing into shore with no recollection of how we got there
Lost amid the clouds that lie between the wake and sleep
Wishing only for relief and a sense of normalcy
Sinking
Waiting
Breathing
Sleeping


Posted on Apr 7, 2009, 4:26 PM

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Like it

by Bulldawg (no login)



Posted on Apr 7, 2009, 5:26 PM

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Amazing talent amoung PWN

by Scarlet (no login)

If it is alright with you I'd like to print this out.?



Posted on Apr 8, 2009, 5:48 AM

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Re: Amazing talent amoung PWN

by Lindsay (no login)

Thanks guys, I'm glad you like it :)

You can definitely print it, no problem. Once it's shared it's free for the taking, in my opinion.

Posted on Apr 8, 2009, 7:38 AM

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thanks!

by (Login patlittlejohn)
Moderators

.

Posted on Apr 8, 2009, 7:07 AM

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in awe

by (no login)

I'm so in awe of those who can express themselves in words. Lindsay and Scarlet, you are both very talented.

Through all my years of quilting and its many forms, I am on a mission to learn the art of picture piecing. This form of quilting is like an oil painting, but with fabric, many, many pieces of fabric. I bought a book about it several months ago and this is my summer mission expermenting with this type of quilting. After some practice I hope to put together a picture, depicting narcolepsy. I'll post to our album when I get one done. (don't hold your breath, this will take me some time)

Posted on Apr 8, 2009, 7:36 AM

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N. quilt

by (no login)

Will the block lines be Fracture lines?

Posted on Apr 8, 2009, 9:01 AM

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Quilting is a talent!

by Scarlet (no login)

And you have made some beautiful ones !

Posted on Apr 8, 2009, 11:31 AM

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Re: Whatcha think?

by (Login paulqueen)

when i was 13 i got the debut album of the band, 3rd eye blind, and track two on it was called narcolepsy. i didnt even have a clue at the time what the song was about or what narcolepsy really was, or how the lyrics were quite fitting... but you just reminded me of it so i had to look em up. so here it is for anyone who hasnt heard of this song before...


Im on a train, but theres no one at the helm
And theres a demon in my brain
Who starts to overwhelm whelm whelm whelm whelm
And there it goes, my last chance for peace
You lay me down, but I get no release
And I say i, I try to keep awake
I try to swim beneath
I try to keep awake
But i, I can feel this narcolepsy slide
Into another nightmare

And theres a demon in my head who starts to play
A nightmare tape loop of what went wrong yesterday
And I hold my breath till its more than I can take
And I close my eyes and dream that Im awake
I try to keep awake
I try to keep awake
I try to keep awake
But i, I can feel this narcolepsy slide
Into another nightmare

I read dead russian authors volumes at a time
I write everything down except whats on my mind
Cause my greatest fear is that sucking sound
And then I know that Ill never get back out
And theres a bone in my hand that connects to a drink
In a crowded room where the glasses clink
And Ill buy you a beer and well drink it deep
Because that keeps me from falling asleep I said

Howd you like to be alone and drowning
Howd you like to be alone and drowning
Howd you like to be alone and drowning
Howd you like to be alone and drowning

Still I find this narcolepsy slide slide
Into another nightmare
Keep awake, keep awake, keep awake
And I can feel this narcolepsy slide

Posted on Apr 8, 2009, 10:15 PM

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Provigil

by Masreck (no login)

Has anyone had any success with Provigil by its self or in combinations with other drugs?

Posted on Apr 7, 2009, 12:55 PM

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not I said the fly

by Scarlet (no login)

Provigil was a fake awake that made me crash not to mention the fact I got a terrible rash as well as some serious swelling.

Posted on Apr 8, 2009, 5:49 AM

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Provigil

by (Login patlittlejohn)
Moderators

was a miracle to me, like getting my self back. worked on the first 100 mg i could lay hands on.

but getting it took me on quest after quest, and in 2007 about the time they admitted to some skin rash problems, i seem to have become very sensitized to sun and chemicals.

Posted on Apr 8, 2009, 7:02 AM

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re: not I said the fly

by (no login)

I'm with Scarlet on this. About two hours after taking Provigil I would get a horrible headache, then the crash later and anxiety. I did love the focus I would experience, but the other side affects weren't worth it, plus I still fell asleep after two hours.

Posted on Apr 8, 2009, 7:16 AM

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re: Provigil

by (no login)

A friend of mine in our winter rv park and fellow quilter, told me that her doctor gave her some samples of provigil for her sleep apnea and fibro. She said she absolutely loved it. No fibro fog in the morning and could focus most of the day very well. I'm glad it worked for her in the way she was hoping, but I also told her of the expense when she goes to fill her first rx. That blew her away. But she said it was worth the cost. Maybe, since many doctors are writing off label so much, the cost will come down. Cephalon just pisses me off, they make these drugs so out of reach for those who really need it. We need to get out and protest, like the sixties, in front of these greedy drug companies.

Posted on Apr 8, 2009, 7:25 AM

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Tired

by (no login)


Hey gang, you guys have been talking allot this weekend. Its strange writing to people who are going through what I am. What do you guys think that buzzy noise that you hear when your having an HH?


Posted on Apr 6, 2009, 11:40 PM

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Bee in my ear

by Bulldawg (no login)

I think I remeber reading something about it being a C attack but I could be mistaken.

Posted on Apr 7, 2009, 3:48 AM

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Re: Tired

by (Login patlittlejohn)
Moderators

i always thought that was a neurological glitch, kind of like having vision "narrow" or turn red. i think of the senses kicking off some functions and putting in or expanding others,

totally malfunctioning, of course. buzzing means i am not hearing.

Posted on Apr 7, 2009, 8:01 AM

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Re: Tired

by (no login)

I hear it like its moving through the back of my head, like at the base of it. Sounds like electricity?

I used to hear it before a C attack...I haven't noticed it lately, but that doesn't mean it doesn't happen. Maybe just that I'm not paying attention.

Posted on Apr 7, 2009, 3:05 PM

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Re: Tired

by Nikki (no login)

Wow, there goes another symptom I have had that I did not connect to narcolepsy.

Posted on Apr 7, 2009, 3:42 PM

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Re: Tired

by Scarlet (no login)

I've had a ringing in my ears for a few years now and boy is it ANNOYING!

Posted on Apr 8, 2009, 5:50 AM

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Tired

by Masreck (no login)

I always feel great pressure like my eardrums are going to explode

Posted on Apr 8, 2009, 8:04 AM

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Re: Tired

by (Login paulqueen)

i'm not sure how many of you are into transcendental meditation and other dimensions and psychedelic drugs and such...but there is a drug, which is supposedly secreted naturally by the peneal gland (essentially the 'third eye' in the brain), its called dimethyltryptamine or DMT for short. it is theorized to be secreted during REM sleep and is the cause behind our dreams...

i am building up to something btw, hahaha

anyhow, as researched by terrence mckenna amongst other entheobotanists, when DMT is extracted from a certain species of grass that has extremely high content of DMT, and the DMT is then smoked, the experience first of all is almost identical for everyone who does it, and part of the experience or "trip" if you want to be derogatory, involves a very large buzzing sound at one point.

obviously that last part is the point i was getting at.

full description by terrence mckenna of the DMT experience - http://deoxy.org/timemind.htm


if anyone is interested in learning more about not only this chemical, DMT, or terrence mckenna himself or other enteobotanists, as well as general metaphysical, astral, multi dimensional type stuff that all has spiritual and religious ties in it... then check out deoxy.org but beware, it can be a confusing site to navigate, like wikipedia because everything is a link almost and there is so much to read.


Posted on Apr 8, 2009, 10:27 PM

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When it rains, it pours

by (no login)

So, as I mentioned recently, my employment was in question. Last Sunday, I started coming down with something - flu, maybe. I haven't been this sick in a long time. On Tuesday, I was laid off from my job. I was just starting to feel better yesterday, but I was still up all night coughing. Around 10 am today, I had a sudden pain in my lower back, which quickly spread to my left lower abdomen. It was the worst pain I had ever felt in my life, and it wasn't going away or getting better. Luckily, I still have health insurance, because I drove myself to the nearby Urgent Care. I sat around for 45 minutes, whimpering in pain. After about 3 more hours of testing- urine, blood, x-ray, ct scan- I find out I'm the father of 3 kidney stones. They're 2-3 mm and still near the kidney, so I have a while to go yet before I get to pass them, old-school style.

The pain comes and goes, and they gave me Vicodin, even though I mentioned it didn't work on me. I'm just going to take huge doses of Advil, and hopefully I'll pass them in the next day or so, and they pain will be gone so I can finally sleep.

Anyway, thought I'd share the story, and fish for a little sympathy. :)

Posted on Apr 6, 2009, 4:32 PM

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Father of three

by Bulldawg (no login)

Drink 1/8 cup of extra virgin olive oil and drink a 6 - pack of coke. The carbonic acid should help bust the stones.

Posted on Apr 6, 2009, 5:02 PM

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Re: Father of three

by (Login patlittlejohn)
Moderators

Dawg! thank you!!

i messaged that straight to my poor son in law... he has passed 4 out of 5 since friday, and has been alone with my grand children (4 and 1) all this time, since my daughter walked o7ut on them


Lord Lord,

please please pray for Clint and the babies

Posted on Apr 6, 2009, 7:29 PM

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re

by phil (no login)

what kind of dick would prescribe that puny a pain killer for kidney stones

maybe you could call regular doc

Posted on Apr 6, 2009, 5:15 PM

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Re: When it rains, it pours

by (Login patlittlejohn)
Moderators

Dread,

i am SO sorry. that is the worst pain. i will be up at odd hours, kind of having C really bad.

email me if you are just needing company. i will check every 10 minutes while i am up and in my right mind

Posted on Apr 6, 2009, 7:21 PM

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Birth

by Bulldawg (no login)

Have you gave birth yet?

Posted on Apr 7, 2009, 5:27 PM

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not yet...

by (no login)

I'm afraid not yet. The pain started 33.5 hours ago, but lightened up a lot about 24 hours ago. I guess because there are 3 of them stacked up, it's complicating things a bit.

I can't believe how much I've drank compared to how much I've peed. I can't keep going like this :)

I have an appointment tomorrow morning at 10 am. I'm going be there, even though I still sound like a chain-smoker (from the cold I'm still getting over). We'll see how I'm doing after that.

Posted on Apr 7, 2009, 5:38 PM

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3 stacked

by Bulldawg (no login)

Good Luck, I had a stone about this time last year. Such wonderful memories and don't try sucking on lemons. My wife said someone told her the acid would help but it did was hurt more when I went to the bathroom.

Posted on Apr 8, 2009, 4:05 AM

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Sympathy Granted

by Scarlet (no login)

I haven't had a kidney stone for a while but boy do I remeber the pain! Hang in there ~

Posted on Apr 8, 2009, 5:52 AM

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Re: Sympathy Granted

by (Login patlittlejohn)
Moderators

i am praying, cant sympathize because i plan to never go there.



Posted on Apr 8, 2009, 7:36 AM

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Orexin-A Induces Weight Loss

by phil (no login)

Orexin-A Treatment Induces Weight Loss in Rats.

Novak CM, Levine JA.

1Endocrine Research Unit, Mayo Clinic, St Marys Hospital, Rochester, Minnesota, USA.

The neuropeptide orexin (hypocretin) increases energy expenditure partially through increasing spontaneous physical activity. The ability of exogenous orexin to alter body weight has never been established, however. We sought to determine whether orexin-A microinjected into the paraventricular nucleus of the hypothalamus (PVN) induced weight loss in rats. Chronic guide cannulae were implanted into rats, aimed at the PVN. Rats were given daily microinjections of orexin (0.5 nmol) or vehicle into the PVN for 6 days; food intake and body weight were measured daily. In a separate group of rats, we injected orexin-A and vehicle intra-PVN and measured daily activity levels. Daily orexin treatment induced weight loss: orexin-A-treated rats lost significantly more weight than their vehicle-injected counterparts without a significant difference in food intake. Rats were significantly more active after intra-PVN orexin compared to vehicle. These results support the concept that orexinergic agents have the potential to produce negative energy balance through increasing physical activity. This presents a promising, untapped potential resource for weight loss.Obesity (2009) doi:10.1038/oby.2009.91.

PMID: 19343016 [PubMed

Posted on Apr 5, 2009, 2:25 PM

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Re: Orexin-A Induces Weight Loss

by (Login patlittlejohn)
Moderators

and i hold out hope that the money market for weight loss will work in our favor.

research and development will be flooded with funding, and then our little forgotten disease may get the golden key.

Posted on Apr 5, 2009, 3:09 PM

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I have an interesting life

by Bulldawg (no login)

Please feel free to laugh at the real true life story and the question I'm going to ask? Ok so yesterday I was at work and I was getting more PO and stressed by the minute. It was a hard bad day, I don't remeber the last time I got this stressed. My C is the worst when I'm stressed. I was at my computer trying to let some of it go and I started zoning a bit. I go up to go the bathroom (#1) and for some reason wiped for #2 upon doing so I had a nice hand ful of blood. Sent to the ER, C the whole way out, couldn't move for 30 minutes. The cut my clothes off me, IV's, chest xray's, etc etc etc we all know the deal. Got told a ruptured a blood vessel. Ok Hmmm Here is the question: Did I get so stressed a blew a hemroid out???? Just had to ask. Feel free one and all to reply back.

Posted on Apr 3, 2009, 2:52 PM

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yikes!

by (Login patlittlejohn)
Moderators

i know that vessels in the esophagus and in the lower GI can be weakened and bleed out, but that had to just give you a total heart attack!

did anyone in the ER know why you were unresponsive that long?

Posted on Apr 3, 2009, 3:20 PM

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er

by Bulldawg (no login)

Yhea I could still sorta talk in that 3 day binge drinking mouth slurred words sorta way and I was able to communicate to them

Posted on Apr 3, 2009, 3:29 PM

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Re: er

by (Login patlittlejohn)
Moderators

bless your heart, Dawg, i know you thought, "oh f**k" at first.

im keenly aware that our human frailties are made that much spookier when we are suddenly "drunk" with the C effects.

and Steve, laugh now! next time you come back as a woman!

Posted on Apr 4, 2009, 8:35 AM

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Blood

by (no login)

LOLOLOLOLOLOLOL HAHAHAHAHAHAHAHAHAHAHAHA

The mental image is too much!

(sorry, but I couldn't resist - well I could I just didn't want to)

Posted on Apr 3, 2009, 10:45 PM

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Re: I have an interesting life

by (no login)

Wow, Dawg.. I am speechless. I will tell you.. that has happened to my ex .. twice.. first time he didn't inform me about the bleeding until he almost bled to death.. second time he was at emergency before he even called me.. lol.. he learned his lesson the first time. Surgery both times though, to remove the part that had the ruptured vessel. Anyway, he wasn't stressed or anything.. except physically. His job required alot of heavy lifting and he, being mr proud, refused to ask for help. It was his own place of business so not like anyone would look down on him for it. Anyway, take it easy, Dawg.. so glad you are ok thru all this.

Posted on Apr 4, 2009, 12:02 PM

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Untitled

by (no login)

hi. i just came across this post (http://www.network54.com/Forum/171382/message/1209010824/Astrocatalepsy).

i too have had situations occur that are almost exact to his descriptions *shudder at the thought*

i am awake right now, at 6 a.m. in the morning, because when i fell asleep about a half hour ago i had another of those scary experiences. this one wasn't THAT bad really, not as bad as others.

what happened was i felt a presence, a strong presence, and i tried to say something to it along the lines of "are you a ghost?" because i could feel it, how it feels to have someone sitting on you giving you a massage or something, with a leg on each side of you ya know? and i felt as if i were floating or at least the bed were because there was a slight rocking motion. anyhow, when i asked, either in my mind or maybe out loud, i cannot be certain, i sort of 'felt' a flash of light/energy and had a quick vision of a big blur of light that made me feel fuzzy/buzzy for a split second in the head and then, i dunno why but i asked 'do you know my mom?' and once again i was greeted with a fuzzy feeling in the head and a flash of some sort of mass of light as if to signify yes?.

it was pretty nuts, but it wasn't entirely scary as other experiences have been. the main thing was that i just felt creeped out by it all because i was in the dark by myself at my parents house and just felt vulnerable for some reason.

ive had other, demonic hazy foggy shadowy figure experiences as that guy has, and i know it sounds terribly cheezy but i started thinking/reciting in my head things from the bible and 'the power of christ compels you' and such and i seem to have more control over the situation and sometimes it dissolves rather quickly after that. when i had my first couple experiences like this i started reading the bible, and that seemed to put things off temporarily, but it started back up at an intense rate, as if something were trying to scare me out of doing so or something?

ive also had the thing he described when there is something there that tells you "it will be alright" or whatever... for me, when this happened, i felt/saw/imagined a shapeless body of light above me and it was not scary feeling at all and it left me feelin kinda hyper and half buzzed for a short moment..

anyhow, im not exactly your regular everyday christian, but if anyone has these experiences then start reading the bible, such as the gospels of the new testament or just start at the beginning of the old one or skip around, whatever... i'm curious how this may affect others experiences.

interestingly i have a friend, one whom i've known for almost 20 years and i am 25 years old...so basically all my life. he has smoked weed a handful of times YEARS ago, literally only a handful of times btw, no other drug use, and rarely drinks, is in beyond excellent shape because he is a boxer and wrestler... but he is quite spiritual. not like he walks around and goes 'praise the lord!' and stuff, but he believes in SOMETHING and that there are spirits around us.. well, when i brought up to him the experience when i first had one and he told me he has had similar experiences.

maybe it all has to do with some of us being 'tuned in' to that wavelength somehow... can't wait to read about any thoughts people have on this one. im done now before i start babbling more and more

cheers,
paul q

Posted on Apr 3, 2009, 3:21 AM

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Re: Untitled

by Nikki (no login)

If anyone has seen the movie "Nightbreed...

When I was younger, I was freaking out because I was seeing some creatures like in the movie, before I even saw that movie. I described the beings to a friend of mine that knew about monsters, myths, etc. He said he saw them on that movie.

Posted on Apr 3, 2009, 12:55 PM

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Re: Untitled

by (Login paulqueen)

haha yeah ive seen that movie. ive never seen creatures like that though... mainly just shadowy figures for me

Posted on Apr 3, 2009, 2:11 PM

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Re: Untitled

by (Login patlittlejohn)
Moderators

i dont believe my HH are remembered things, like normal dreams where you process thoughts and experience. i think the process of REM and dreaming is short circuited.



Posted on Apr 3, 2009, 3:17 PM

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Re: Untitled

by Nikki (no login)

I remember pretty much everything. I have remembered on up to 10 different dreams I had within one night. I remember the hallucinations before I fall asleep as well.

Posted on Apr 5, 2009, 3:01 PM

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ignorance once again

by (no login)

today I had my first physical therapy session for my back pain. I had this young girl and we discussed my problem with the bulging disks and I brought up my neck pain from my falling asleep with my chin on my chest. She looked at me funny and asked why I would go around with my chin on my chest when I'm sitting up in a chair. I had to explain once again, that I have NARCOLEPSY, A SLEEP DISORDER. She then proceeded to say she had never heard of it. I just can't believe that anyone in the health care field isn't educated about sleep disorders. I always carry those pamphlets around in my purse just for these occasions, that I got from the Narcolepsy Network and hand them out like some hirakrishna on the street corner. As I was doing my exercises she was reading the pamphlet. She was totally amazed, had a dozen questions for me, then said she had a teenage nephew that has some of these symptoms and was going to pass the info onto her sister. She is going back to school to become an RN, I told her to please share this info with the other nursing students. She said she was going to keep the exercises limited to those sitting down or lying down. I think the cataplexy part scared her.

Posted on Apr 3, 2009, 3:18 AM

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just amazing

by (Login patlittlejohn)
Moderators

and now that there is SO much specialization, we are falling behind in awareness!~

i hope that was a fantastic SAVE about her nephew. could be you have saved a young man from years of criticism and counterproductive negative crap.

oh yeah c3.

btw, i love physical therapists. they are brigadier generals, but they get you more relief than a shop full of surgeons.

Posted on Apr 3, 2009, 8:40 AM

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AWARNESS

by (no login)

All I can say is, "Wow"...

Posted on Apr 3, 2009, 10:47 PM

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Re: AWARNESS

by Nikki (no login)

I have been so totally shocked at people who don't know what narcolepsy is and they work in the medical field. I don't know a thing about medical stuff and I knew what narcolepsy was because we learned about insomnia and narcolepsy in school-just not in detail. But at least I knew what it was.

Posted on Apr 4, 2009, 12:18 AM

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Re: AWARNESS

by Scarlet (no login)

I work in a health care office and they don't get it either. I have ONE great supervisor who gets it and 2 other supervisors who think I should not be tired because I am on medication and due to the fact I am not "completely disabled" and N is not deadly like cancer.



Posted on Apr 6, 2009, 5:46 AM

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frozen in this place i hide

by (Login paulqueen)

soooo... question for anyone reading this with N and C.

did you ever feel C-R_AZY! from your symptoms, like you are going insane and tweaked out and anxiety and the like before you got diagnosed? or worry that your problems were a brain tumor or epilepsy coming on?

i did, and am just curious if anyone else felt this way.

the cataplexy especially scared me cuz i would get a chattering jaw and go into a sleep paralysis and HH state of being every once in awhile when i would eat too much sugar (it turns out) and have too little sleep... it was craziness and made me think i was losing my mind.

Posted on Apr 3, 2009, 1:04 AM

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Frozen-I hide

by (no login)

If you compound all of the feelings, and you get no relief, or answers - Could that induce a
Catatonic state? Could it be possible that Mental illness in past generations (50 years or more) could have been mis-diagnosed N.?

Posted on Apr 3, 2009, 2:42 AM

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Re: Frozen-I hide

by Anonymous (no login)

or likewise, could misdiagnosed N in the past be mental illness? hahah


Posted on Apr 3, 2009, 2:48 AM

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re: frozen in this place i hide

by (no login)

it's another bad night 2:30 am awake and so tired, so if this doesn't make any sense, i'm sure you'll understand.

I'm one of those that took 35 years to get dx and I can relate to the feeling of anxiety, that something was wrong but didn't know what it was. For so many years I guess I thought it was just normal to be this way. My memory doesn't serve me very well anymore and I don't remember much in the way of details. I still feel like I'm crazy or just so totally different than everyone else I know.

When you get older and have to put up with other old age things it just makes matters worse.

Especially on the bad nights with little sleep, I just wish I had that wonder drug versed that they use in some procedures that just keeps you below consciousness but no memory of what is going on. I just don't want to wake up.

Posted on Apr 3, 2009, 3:01 AM

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Re: re: frozen in this place i hide

by Paul Q (no login)

maybe you should check out the thread we had on marijuana below if you are wanting to sleep and have no memory of what is going on




Posted on Apr 3, 2009, 3:17 AM

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re: pot

by (no login)

As I mentioned earlier I used to smoke it many years ago, with my allergies I guess I'm allergic to it, headaches, sinus problems. I used to take the street speed when in college and used the pot to go to sleep and relax at night. All I wanted to do was eat!!!

Posted on Apr 3, 2009, 3:21 AM

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I sympathize

by (no login)

I felt like I was crazy, only because doctors told me there was nothing wrong for 15 years. I was also told to see a shrink on several occasions because my problem was depression, anxiety etc. An ex also told me he thought I was schizophrenic because of the HH. I started to believe everyone until I found info about Narcolepsy on my own and made an appointment with a very caring sleep specialist.

Posted on Apr 3, 2009, 3:54 AM

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Re: frozen in this place i hide

by Nikki (no login)

That is EXACTLY something I do. I have never heard of anyone saying that about the jaw thing. I didn't realize it had anything to do with narcolepsy. I do that sometimes when falling asleep and then it wakes me up. Then I do that about 5 or 6 times, then my jaw is in pain for a while.

Posted on Apr 3, 2009, 12:47 PM

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Re: frozen in this place i hide

by (Login paulqueen)

i cant say it has to do with narcolepsy, maybe it IS from something else...but it only seems to onset when i am extremely tired and didnt get enough sleep for a few days straight.. or eat way too much sugar and once again am very tired.

everything gets fuzzy and weird kinda, like what i imagine HH is supposed to be, but at the same time i wondered if it were a seizure. i read on one of the books on google books, forget which, that some time of partial seizure can be caused from sleep deprivation... so maybe that is it? i dunno...

Posted on Apr 3, 2009, 2:11 PM

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Re: frozen in this place i hide

by (Login patlittlejohn)
Moderators

i always got slapped down (docs, other people with N) when i described my "little seizures". i wonder if it is information that would help, or if i should just shrug it off? thought it might affect someone else, but i hate for extraneous data to muddy the already muddy thinking.

Posted on Apr 3, 2009, 3:22 PM

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Re: frozen in this place i hide

by (Login paulqueen)

yes, i definitely have had those occurrences. here is the best description i can give of my experience with whatever they are, seizure or not...

firstly, i can tell when it is possibly going to start (in epilepsy this is called an 'aura'). i get a really slowed down feeling, like, my limbs do not react as fast... like trying to lift your arm but it has weights tied to it so it becomes a very sluggish movement. if that doesn't happen, then i may also get the bobbing head syndrome where i keep jerking my head back becuz i cannot resist falling asleep, like with micro sleeps. if neither of those, then i will notice my jaw start to chatter andt hings become somewhat fuzzy and as if my vision has went from 90 degrees to like 50 degrees'ish. the jaw thing seems to happen no matter what happens beforehand btw, but i can get myself out of it by gettin up and moving around or by going to sleep, unless it hits the jaw tremors, then i am in for the ride. my limbs end up very useless as mentioned before, but its not like sleep parlysis where i cant move em at all.. they are just super heavy and slow reacting and it requires SOOO much energy and thought to try to move. i get a weird vibing pulsing sensatino in my brain a couple times, maybe only once at times, but not like when you have blood pump hard in your brain after an exercise or something. . more of a buzz feeling of sorts, only its kind of a creepy buzz cuz you are wrreid soemthing is wrong with you. most of the time i will experience a very strange, not scary though, encounter with someone i know, or have a weird memory about people being in the room orsomething even though im the only one there. it only lasts a mere half aminute tops normally, if not less. there is no pain. no change really after the fact aside from feelin a bit nuts and going 'wtf' immediately afer things have run their course. once it lasted like 8 minutes or something thoug. it was crazy. i dont even rememener.

it was kind of like how morphine or opium affect the brain. when you try it, if you take a moderate dose, you are bound to hallucinate and its weirdness and you actually see and experience a similar 'trip'. its crazy all around. i feel fine after everything... sometimes i wanna take a nap but tha is only if i have anxiety from it or somethign and just dont feel right in the head, as in anxiety and craziness from what just happened, not lik i am lacking energy or something lke what happens with true epileptics i hear/read.

the site i found the thing on about sleep deprivation and seizures can be found here. i looked itup on half.com to buy it but its like 100 dollars or somethin.

http://books.google.com/books?id=yCFHaLxv210C&pg=PA70&lpg=PA70&dq=sleep+deprivation+and+seizures+book&source=bl&ots=1C2otpU5Jm&sig=lzoODOKWyeL38zPVXPgbB_CoggE&hl=en&ei=qsbWSeigG43GM_bawfEO&sa=X&oi=book_result&ct=result&resnum=3

Posted on Apr 3, 2009, 7:44 PM

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Re: frozen in this place i hide

by (no login)

The jaw chattering I can understand.. to me it's like I'm trying to keep my mouth closed but it keeps falling
open.. but in very quick succession..it just shakes. The creepy pulsating buzz.. you betcha. Not so much anymore
but that was the first sign I would have before I would go into an HH. When I get that buzz now, I know it's time
to lie down.. and yes, will probably have an HH. What it feels like to me .. is someone is squeezing my head in on
the sides.. and letting go, etc (coming in waves) but with that buzz at the same time.

When I first started having cataplectic attacks, they were very jerky. I called them seizures before I knew
what they were.. because that is what they felt and looked like. I would lose the muscle control and in a
split second have it back again. So.. my arm might go out and drop and zoom right back up again to where it
was. First time it happened with my arm was when I was putting on mascara.. had a line down my face before I even
realized what happened.. lol. Anyway, usually it would happen over and over very quickly.. so they looked like
seizures. Happened mostly in my legs.. lots of bruises.. not to mention funny looks from people.

I don't really have the heaviness...other then plain have trouble moving .. having to find a place to just lie down.

And.. since I almost forgot what this thread was about.. lol.. I will say a great big YES to feeling crazy or having a tumor. I thought both. Crazy due to the hallucinations.. and having a brain tumor because of the "seizures".





    
This message has been edited by cataplexic on Apr 4, 2009 12:38 PM

Posted on Apr 4, 2009, 12:29 PM

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u r not crazy

by (no login)

I woke up on a Monday and thought it was Saturday. About two hours later I realized it wasn't Saturday but I didn't know if it was Sunday or Monday and it really freaked me out for a few hours. I mean it really freaked me out. I thought that maybe I was getting old-timers. It was a very unsettling experience being unable to recall what day it was.

It took a few hours to recall both Saturday and Sunday.

Posted on Apr 3, 2009, 10:55 PM

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u r not crazy

by (no login)

Wait until you have been retired for five years, that happens at least once or twice a week!

Posted on Apr 4, 2009, 2:17 AM

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retired

by (no login)

I am actually retired in a around about way...I am on Social Security Disability...so I am retired but not in the way I would prefer. Does retired mean you are tired again, like when you re-open something...

Posted on Apr 4, 2009, 6:28 AM

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Soucarlet

by (no login)

When I go to Mayo on the 17th and speak with the sleep doctors, I would like to take them the poem that you wrote last year. I think it says alot about how we all feel about N, it is very touching. Would that be alright with you? I plan on taking our definitions list, definately, I wish it were complete, but work in progress still makes the point. I feel that the text book definitions need to be expanded and they all need to get past the four symptoms, as we know it goes much deeper than that. We need a voice and they need to listen and I will give it a shot.

Posted on Apr 2, 2009, 8:14 AM

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sorry

by (no login)

After such a bad night and very little continual sleep, obviously my brain is not in spelling mode. Sorry Scarlet.

Posted on Apr 2, 2009, 8:16 AM

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Of Course you can!

by Scarlet (no login)

If there's any tweaking you want to do or add to please feel free.


Anything I can do to help another PWN .

Posted on Apr 2, 2009, 12:26 PM

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Definition Project page

by (Login patlittlejohn)
Moderators

as the Def's are getting upgraded almost constantly, here is the latest... and comments from all would be appreciated, and i would hesitate to just flesh out some of the blanks at the bottom ... i will include anything you think is wise.

ps. good luck getting anyone to read that far! can you leave it in your records?

i am delighted to know they are so dedicated to giving each patient time and attention though. so excited about this, Pam.





"Simplest description: have you ever gone forty-eight hours without sleep? It’s like that all the time. Sleep is not just one thing; it’s a lot of different components stuck together. In narcolepsy, the diverse manifestations of sleeping and waking states keep coming loose and sliding into each other’s territory." (nielsenhayden.com)


Narcolepsy:
A chronic neurological wake/sleep disorder caused by the brain’s inability to regulate (control) “normal” sleep-wake cycles.

Considered to be a disorder of the normal boundaries between the states of sleeping and waking, narcolepsy is technically defined by excessive daytime sleepiness and sleep attacks, in conjunction with one or more auxiliary symptoms, which can include cataplexy, hallucination, and sleep paralysis.
The line between being asleep and awake can be blurred. Signs and symptoms may vary in severity but never truly go away.
The quality of life impact of narcolepsy is profound, struggling to complete activities of daily living: in one study, the impact was rated greater than living with Parkinson's disease.

Cataplexy:
An unexpected loss of power in controlling your body, specifically the loss of muscle control, almost exclusive to narcolepsy. Sudden weakness caused by anger, excitement or amusement. Temporary paralysis of the muscles controlling posture and body movement.
Cataplexy involves regional muscle groups and may result in symptoms such as a drooping head, sagging jaw, slurred speech, buckling of the knees, or weakness in the arms.

EDS (excessive daytime sleepiness):
Fleeting urges to sleep, involuntary sleep episodes, overwhelming urge to sleep, and decreased alertness throughout the day.EDS reduces motivation and vigilance, interferes with concentration and memory, and increases irritability.

Hypnogogic Hallucination:
Intense vivid images, sounds and tactical sensations that make things seem real even though they aren't. Vivid dreams while falling asleep or waking up. Dream-like sensory and visual hallucinations experienced as reality.

Auditory Hallucination:
Very real-seeming sounds, registered by the brain as "heard" and not "thought", often mundane speech and environmental sounds without other confirmation such as seeing. Disorienting and disturbing being unable to trust your senses.

SP (sleep paralysis):
Sleep paralysis is an inability to move or speak while falling asleep or when waking up. Generalized weakness upon waking or going to sleep, being conscious but unable speak, move, or breath deeply. May occur during micro sleep, and sleep intrusions during waking activity.

Sleep Apnea:
There are three types of apnea:
Obstructive apnea - In this form of apnea, the muscles at the back of the throat relax to the point of obstructing the upper airway. Loud snoring is a common symptom.
Central apnea - Central apnea is when the airways stay open but the diaphragm and chest muscles stop working. This forces the sleeper to wake up several times a night to resume breathing.
Mixed apnea - Mixed apnea is a combination of the two, usually a short period of central apnea followed by a longer period of obstructive apnea.

Automatic Behavior:
Trance-like behavior doing things on "auto-pilot" for some time. Undertaking routine tasks without being conscious of doing them and most often not remembering.
During conversation to jump from one topic to another or just trail off and stop talking all together. Movements may be slow or clumsy, speech may be slurred, may be unresponsive or wake up suddenly. May be unpredictable or illogical.

Falling:
Weakness, numbness, stumbling, dizziness, non-peripheral vision, "syncope", cataplectic muscle collapse, sudden onset sleep attack. Contributes to daily danger of injury and accidental spills, fires, breakage.

Migraine:
Extreme headache usually centered on one side of the head and accompanied by severe sensitivity to light and/or sound. Intense pain often causes vomiting. Migraines may be preceded and/or accompanied by "auras" which vary from victim to victim from dancing lights or "rainbow" visual disturbance, to full color "light shows".
Visual disturbances with or without headache pain (optical migraines) accompany migraine processes thought to be related to changes in blood flow in the brain. Episodes may progress from visual "auras" to temporary blindness.
Migraines are truly debilitating, rendering the sufferer incapable of moving without increasing the pain and making it difficult or impossible to think clearly. Because they are so pain intensive, migraine sufferers may take a few hours to a day to regain their energy and equilibrium.
Some triggers include red wine, alcohol, red meat, MSG, sodium, certain preservatives, medications, allergies, smells, lights, sounds and stressors.

Oversleeping:
Difficulty or inability to be roused from sleep, even through hours of repetitious alarms, calls, and visits. There may be no memory of the wake-up attempts, automatic behavior may be reported, may have dreams and hallucinations about wake-up attempts.


INS (interrupted nighttime sleep):
Intrusion of wakefulness during nighttime sleep, waking suddenly without warning or cause, feeling alert and briefly refreshed. Intermittent waking and sleeping at night.


Insomnia:
Difficulty or inability to fall asleep; may be physically and mentally exhausted, sleepy and prepared for sleep, then lie awake for hours. May be unstressed, comfortable and on-schedule, every habit of night time sleep the same as usual, and remain awake.

Micro Sleep:
Sudden onset sleep, involuntary and without warning, during activity or inactivity, at rest or in motion. Not associated with emotion or surprise as in cataplexy, also not conscious and able to see and hear as in cataplexy. complete transition from awake to deep dreamless sleep instantly, usually for only seconds.

Microsleeps can be so brief we are unaware of them, usually a fraction of a second. We may think something was forgotten, which was never actually heard, because the information was given during a split-second microsleep.
Similarly at risk for accidents (especially driving), injury and breaking things, and may awaken with shock and anxiety, disorientation, nausea and diffuse head and body ache.
Microsleep may be imperceptible to other people. Or one's head may drop and hang unnaturally, with the body upright. May slump forward (into a book, into a meal), jerk upright or repeatedly bite the tongue during microsleeps.
Micro sleep may repeat at intervals all day during periods of stress or illness, from unknown factors and aggravating conditions, possibly from chronic sleep deprivation, or chemical imbalance due to medication, diet, stress.

Night Terror/Nightmare:
Deeply disturbing fearful dreams, often with sleep paralysis and inability to wake from the dream. Lasting fear and anxiety after waking.

Sleep Testing:
Overnight sleep testing monitors brain waves, eye movement, breathing, leg movement and other signs of sleep and dreams, while sleeping overnight in a sleep lab.

MSLT (multiple sleep latency testing) is a daytime sleep test, consisting of naps and waking periods. Sleep onset time, and the time it takes for REM sleep, and duration and kinds of dream periods are measured. Considered conclusive for diagnosis of narcolepsy.

REM (rapid eye movement) is the deepest sleep, when dreaming and rapid eye movement take place. Thought to be needed for refreshing sleep, and necessary for mental and physical function.

Muscle Weakness:
Strength of muscles may weaken, even with good tone. May be from lack of restorative sleep, from changes in oxygenation of the blood, from metabolism changes in blood sugars/proteins. Exertion may feel like there is strength but not endurance...like having a race car but no gas.
Depression Secondary to Narcolepsy/Cataplexy, Unresponsive or Generalized Depression: usually misdiagnosed, and ineffectively treated. Profound risk, acute in many with associated increased risk of suicide.

(HCRT, also called OREXIN OR HYPOCRETIN). HCRT is a hypothalamic peptide decreased or missing in Narcolepsy and Cataplexy, implicated in the regulation of sleep/wake, motor and feeding functions. There is a test that measures the level of hypocretin (HCRT) in cerebrospinal fluid. The HCRT test is not commercially available at this time but may be available through participation in certain research studies, (Stanford is one). The absence of hypocretin is diagnostic of narcolepsy with cataplexy. However, narcolepsy without cataplexy cannot be ruled out when HCRT levels are within normal range, which may be due to brain injury, acquired environmental and autoimmune damage, or systemic toxic damage .

HDL (Genetic Blood Markers or antigens): A genetic blood test or HDL test can be done to determine predisposition to narcolepsy, although this test is not diagnostic in itself. False negative results appear in racial subgroups and parts of the general population.

EEG (Electro Encephalogram): One standard documentation of narcolepsy is an EEG; unfortunately, 30% of all narcoleptics have normal EEGs.

Lost Time:
Blurred Vision:

Memory Loss:

Disorientation:

Cognitive Difficulty/Delusion:

Intrusive thoughts:

Slurred Speech:

Vertigo:

Tingling:

Facial Paralysis:

Spasms:

Tremors:

RLS (restless leg syndrome):

Body Pain, Headache:

Anxiety:

Rapid Heart Rate:

Suppressed Breathing:

Guilt:

Personality Change:

Weight Gain/Weight Loss:


Succeeding/Failing:

Family Dysfunction:

Isolation:

Misdiagnosis:

Ineffective treatment:

Treatment Delay:

EKG (Electro Cardiogram):

Cardiac Echo Testing:

Hyperthyroid/Hypothyroid:


Brain Trauma/Deformity and Neurobiologic Disease:


Situations that Induce Cataplexy
No of Positive Responses (n=50) Situations
47 Laughter
43 Anger
35 Feeling of Amusement
30 Athletic Activity
28 Excitement
26 Elation
25 Resisting a Sleep Attack
24 Surprise
22 Tension
19 Spontaneous
18 Attempt at repartee
17 Response to a call for action
16 Sexual intercourse
15 Fear
14 Embarrassment
11 Swimming
7 Yawning
7 Revulsion
5 Sighing
1 Driving an automobile
(Adapted from Guilleminault C et al Arch Neurol. 1974 31: 255-261.)

Communication and routine acceptance between family members is very important and can keep cataplectic attacks from being unnecessarily upsetting and disruptive for both the patient and family.








    
This message has been edited by patlittlejohn on Apr 2, 2009 1:16 PM

Posted on Apr 2, 2009, 1:16 PM

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definitions

by (no login)

Thank You Pat. What would we do without you?

Posted on Apr 3, 2009, 11:13 PM

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sleeping pills

by (Login paulqueen)

so does anyone have experience experimenting with trying sleeping pills, either OTC or prescribed, in order to assist with staying asleep?

up until i was diagnosed this last month i was scared to take sleeping pills cuz i had thought the whole time i had some sort of apnea so i didnt want to take sleeping pills and end up not breathing and not waking up at all ever... although it would cure the sleeping problems for good, but death is just a little too much of a trade-off for my tastes >=P

Posted on Apr 2, 2009, 1:13 AM

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re: sleeping pills

by (no login)

I usually take a Benadryl before bed, not so much for sleep, although it is the same ingredient that is in over the counter sleep medicines, but more for my allergies. Since I'm on a cpap too, I have to keep my nasal passages open to breath. The bad thing is that the meds for me make me feel like I've been a drunk the next morning, feel like crap and it takes 2-3 hours for my brain to work. At least I can usually get 5-6 hours of sleep at night. Everything, when it comes to taking meds, is a trade off. Last year after having a cataplexy attack down some stairs and hurting my lower back, my doc gave me some percocet, he knows how I hate narcotics because they induce more sleep, but I was desperately in pain, so I would take one before bedtime only, ibuprophen during the day, and I slept like a baby up to 8-10 hours. I think it isn't a good idea if you have apnea and not on a cpap. I noticed, since I have an auto adjusting cpap machine, that when I wake up after taking percocet, my machine is on its highest setting, like a lawn blower.

Last night I took nothing before bed, haven't had to many allergy problems the last few days and I'm up at 2 am after going to bed at 10 pm. In between 10 and 2 and actually getting out of bed I've woke up at least 3 times and went back to sleep. This is my nightly routine, most of the time. After some 43 years of having narcolepsy, I finally have an appointment April 17 at the Arizona Mayo Clinic, sleep and research center. I am so jacked about this. I know in my heart of hearts that the only offering there will be is meds but maybe they can be a little more creative than my primary care doctor in Idaho, and just the fact that I think I have the years of experience living a narco life to bring some additional light to those who think they know narcolepsy, I will definately take them a copy of our definition page. Thanks Pat!!! Well it's 3 am and time to try to go back to bed. Nighty night.

Posted on Apr 2, 2009, 3:11 AM

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sleeping pills

by (no login)

Are you using CPAP for treatment of your apnea?

As long as you are on CPAP, sleeping pills would not cause problems unless there are other complications (CPOD, Asthma, ect) but even then the risk are minimal. I would talk to your doctor.

Before using any herbal remedies - Valerian Root, ST. John's wort ect. or a supplement like Melatonin and so on check with your doctor if any of these will interact with meds you are curretnly taking so as nto to cause other problems such as liver complications and so on.

Tylenol Sleep is pretty safe - I have blood work done every 90 days just to be safe due to an enlarged liver and spleen (liver enlargement is most likely due to meds and spleen is most likely due to having Mononuclesosis 30 years ago).

Buy the store brand and you will save $$$.

keep in mind alcohol, though it can help you fall asleep, will not give you the restful rejuvenating sleep you need, though I have on occasion taken Nyquil (store brand) when I am unable to sleep after 24+ hours. (man, that stuff gets me talking German in about 15 minutes...guzen arl rilent octshan...or at least it sounds like German...

Posted on Apr 2, 2009, 11:49 AM

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Re: sleeping pills

by (Login paulqueen)

alright, sounds like ill just go with the whoel check with the doctor option before doing anything.

and speaking german, haha... ive drank way too much of cough syrup before too and yea, its pretty strong. its the DXM dextromorphinehydrobromide (or something like that) in it that does that. there is an even higher concentration in mucinex, so be careful taking too much of that stuff and speaking english. thatd probably hurt to take too much mucinex though, that stuff about kills my nasal passages froma regular dose even when i desperately need it.

and i love drinking, so i dont see me stopping anytime soon. i've learned to cope with that by 1) drinking a glass of water inbetewen each alcoholic beverage and also 2) if possible dont drink heavily if i have to work in the morning and 3) stop drinking a couple hours before most people im around... so basically get drunk fast, and quit early so i stay drunk for awhile but am sobering a little bit by the time i plan on goin to bed, having another glass of water or gatorade at that point, and take an advil or two and a vitamin..i prefer the liquid ones, but they get expensive depending your monthyl budget

gonna be doin it toinght woo hoo!

Posted on Apr 2, 2009, 12:41 PM

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Re: sleeping pills

by (Login patlittlejohn)
Moderators

i cant believe what stable 8-10 hour sleep i am having with generic tylenol pm.

i use a machine, which keeps me ticking, and i am not so deep asleep that i cant wake up. for some reason, i have a rare total paralysis during sleep, and i will throw off the mask as soon as it passes, thinking the machine went off. nope, blowing like a leaf blower, i just had no autonomic diaphragm movement.

so i probably will never try a deep hypnotic like xyrem, or even scrip sleeping pills. but Praise God, i am getting used to sleeping at night!

Posted on Apr 2, 2009, 1:25 PM

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Re: sleeping pills

by (Login paulqueen)

awesome to hear.

i might have to try those until i get some meds... after lookin it up cuz i have some at the house its the diphenhydramine HCl in it that is the sleep aid... and then just a quick look at google shows you can buy pills that have only it in them, should be cheaper than the tylenol brand name and then you dont have the acetaminophen pain killer, and some negative effects of acetaminophen are:


**ripped from wikipedia**

Acetaminophen causes three times as many cases of liver failure as all other drugs combined,[7] and is the most common cause of acute liver failure in the United States,[6] [8] accounting for 39% of cases. While it occurs through overdosing[5], even recommended doses especially combined with even small amounts of alcohol, have caused irreversible liver failure. [9] [10]

Acetaminophen is metabolized in the liver, resulting in a by-product, N-acetyl-p-benzoquinone imine (NAPQI), that can damage liver cells, but is typically converted into a harmless substance by an antioxidant glutathione. However, large doses of acetaminophen overwhelms the body's supply of glutathione, resulting in destruction of the liver cells. [11]

People who have the highest risk for Acetaminophen related kidney failure include: heavy drinkers (three or more drinks per day), elderly men, and persons with pre-existing liver or kidney damage.[12] In infants and small children, studies have indicated that the toxic dose is less than twice the recommended dose.[13].

A study published by the Journal of the American Medical Association in 2006 suggests problems even in healthy people taking the pain reliever as directed.[14] Healthy adults taking maximum doses of Tylenol for two weeks had abnormal liver test results. Dr. Neil Kaplowitz of the University of Southern California, co-author of the study, said, "I would urge the public not to exceed four grams a day. This is a drug that has a rather narrow safety window..."[15]

According to a preliminary study conducted by the University of Washington, mixing acetaminophen and caffeine may cause liver damage, especially in heavy caffeine drinkers. Researchers discovered that caffeine can triple the amount of N-acetyl-p-benzoquinone imine (NAPQI), the dangerous by-product which destroys liver cells. [16]. This reaction can also be caused by large doses of painkillers that combine caffeine and acetaminophen (e.g., Anacin, Excedrin & Midol). These products are often used to treat migraines and menstrual discomfort. Dr. Sid Nelson, a professor of medicinal chemistry at the University of Washington said, "Caffeine can interact with an enzyme that can form a toxic metabolite of acetaminophen in such a way that it increases the formation of that toxic metabolite," [17]

Symptoms from an overdose of acetaminophen typically appear after 24 hours, or in some cases up to 48 hours; however, getting immediate treatment prior to symptoms occurring, can greatly improve the outcome. The antidote to acetaminophen overdose, N-acetylcysteine (NAC), is most effective when taken within eight-hours of an overdose.[18] Due to the delayed symptoms and the importance of immediate treatment, overdoses of acetaminophen kill about 12% of those who seek treatment.[9] Typical symptoms range from nausea and malaise to extreme upper abdominal pain in the region of the liver.

Tylenol is only one among many popular medications containing acetaminophen, but few users realize that it is contained in hundreds of other pain relievers and cold remedies, and that combined usage has a cumulative effect. Fifteen percent of accidental overdoses involve the simultaneous use of more than one product containing acetaminophen.[19] Products from common brands include acetaminophen: Excedrin, Midol, Theraflu, Alka-Seltzer and NyQuil, as well as prescription narcotics such as Vicodin and Percocet. Following the recommended dosages for each, but in combination can far exceed safe limits for acetaminophen intake.[20] The manufacturers of Tylenol recommend, "You should not take two or more products that contain acetaminophen at the same time."

Posted on Apr 2, 2009, 1:49 PM

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re: xyrem

by (no login)

I'm with you Pat, I don't like some of the statistics on xyrem, personally scared to death to try it, especially when I have obstructive and central sleep apnea. I have a feeling Mayo may suggest this to me. I am so hard to wake up anyway, it would probably give Bob a heart attack, and I don't want to wake up in the morgue.
I would if I could try the tylenol but with the Hep C antibody, my gastro told me NO TYLENOL, period.

Posted on Apr 2, 2009, 5:18 PM

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Re: re: xyrem

by (Login patlittlejohn)
Moderators

yeah, i remember you have some other HUGE challenges, until you were just backed into a corner with N and C drugs.

i really hope and pray for this connection to Mayo bringing you the best possible result!

Posted on Apr 2, 2009, 6:18 PM

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Re: re: xyrem

by Nikki (no login)

There have only been two deaths, according to the package statistics. One of the people took 30 times their dosage prescribed. The other took a whole bottle in one shot.

There have been some people who had some other side effects and were fine once their dosage was decreased.

Trust me, I was scared of it at first as well and did not start on it until I got through the complete package papers. (Took a couple days because I was falling asleep.) Then soon as I got on it, my life improved unbelievably. Now I can't get it anymore since my husband got laid off last year and we have no insurance now.

Posted on Apr 2, 2009, 8:07 PM

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Pot?

by (no login)

So, some people throw around the idea of smoking pot to help me sleep at night, since none of the drugs seem to work. Despite looking like a pot-head, I've never actually tried it. Does anyone here have any evidence, anecdotal, or otherwise, indicating the effectiveness of trying this? I admit, I'm curious now. I'm very reluctant to try, since I've had such bizarre reactions to every other drug I've tried, and I know, with my luck, I'd get busted on my first try :)

I hope the question doesn't make anyone too uncomfortable. Email me if you want.

Posted on Apr 1, 2009, 10:04 PM

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HR Puff-n-Stuff

by (no login)

In my former life I was a pot-head. I can see how it could relax an individual enough to induce sleep, but I am not sure the sleep would be as beneficial as one might think as is the case with alcohol. Many people think it helps them sleep when all it does is helps them fall asleep. It is a proven fact that alcohol induced sleep will not yield the refreshing sleep our bodies need.



Posted on Apr 1, 2009, 11:04 PM

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Puff n stuff

by (no login)

Amen to that! My Dad was a devout alcohol consumer. He fell asleep in that condition most of his adult life. It got the best of him at age 52. A very sad thing to be remembered for. My Mom and Dad got divorced five years before he died. My Mom died at 84, still loving, and missing him.

Posted on Apr 1, 2009, 11:22 PM

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fathers

by (no login)

I come from a big family (4 brothers and two sisters - I am third in the line-up). My parents divorced in '77 deu to his drinking. I was 14. Dad was 44, mom was 39.

My father passed away in '94. Alchol was the reason though he had been sober for nearly ten years.

Mom never remarried. She hoped to remarry him but was waiting until he was 'clear-headed' so to speak.

She still has the wedding pictures and marriage license hanging on the wall in the living room along with pictures of her parents and his parents.

I have the upmost respect for my mom. Raised 7 children on her own. She is 70 and still working. Even after all my father did, if any of us said anything against dad she would 'beat the living daylights out us' or at least threaten to do it, which always got our attention. (Having the living daylights beat out of you sounds like a very dark and lonely existence).





Posted on Apr 2, 2009, 12:05 PM

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Up in smoke

by (no login)

Somewhere between 74 and 78 I smoked a little weed. The first two times all it did was make me sleepy. I do not have any trouble falling asleep, its staying asleep. The third time we were playing poker and drinking beer. I probably had two beers, and two joints. I had to pass the deal because I didn't think there was enough time left in life to deal the cards. Then I had to go home to my House trailer, 30 feet from where I was playing cards. If I didn't leave now, I would never make it. Enough said, never wanted to feel that way again.
I never tried drugs, I hated to take asprin even for a headache. I was on Desoxon from 1968 untill
1996. Dexadrene from then until now. I have never gotten a high from any of this, and when I was sick with the flu I went up to five days without med. No craving and no withdrawal symptoms.
I even quit drinking. Alcohol makes me sleepy. If I drink to much, I still wake up in 1 1/2 to 2 hours all night long. And I am still drunk.
If my X-wife wanted to clean house, she would snitch one of my 5mg pills. She would go full tilt all day long and actually get the house clean. Later she was the one who accused me of being addicted to speed.

Posted on Apr 1, 2009, 11:11 PM

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Re: Pot?

by (Login paulqueen)

i have a very involved history with all aspects of marijuana. im not saying im proud of this as with any drug use, but i feel my input might be more useful than someone who has only tried pot a few times.

pot doesn't affect your body the same way alcohol does. alcohol, as some other guy said, is certainly bad for sleep. i remember hearing/reading, and im loosely paraphrasing too so i anticpate i'm off a little bit, that it requires an extra 50% of drunk sleep to equal an hour of sober sleep. so to feel an 8 hour night of rest you actually have to sleep 12 hours. pot ive noticed, when you arent using heavily (3 or more times a day being my definition of heavy), makes me feel better rested and i wake up less frequently... normally i average 4 - 6 wake ups per night sleeping, but when i smoke (not drink and smoke mind you) an hour or so before bedtime...you know, light up, watch a dvd or read a book, and then pass out within an hour... and i wake up feeliing quite refreshed, at least more so than sober, and i also have less wake ups as mentioned during my sleep. i either notice dreams less, or i have less, im not sure on that... marijuana does have short term memory effects so maybe i just forget em while im asleep ? lol anyhow, either way, my dreams are NEVER anywhere NEAR as vivid and crazy and scary as they can be on average dealing with N and C. now, as for the lesser than positive things about it, in my experience experiment in the past year or so with sleep and marijuana, ive noticed that i have to get 8 to 10 hours of sleep time in...otherwise if say when i go to bed i have to be up 5 or 6 hours instead of gettin a full nihts rest i will feel extremely bogged down and groggy for the first few hours of awakeness and have trouble getting out of bed i am so tired feeling. i remember reading, although i dont think this was clinical, that marijuana and other plants and herbs categorized with it like salvia divinorum and others, supposedly shortens the length of REM sleep and makes the other stages of the sleep cycle more of a deep sleep. once again, not medically proven or anything to my knowledge.

i hope this helps a little bit. and even though its illegal, i say try it becuz it might work for ya and be worth it.. and then you can start talkin to your doctor bout it and if you live in oregon or california, and soon michigan you can get medical marijuana. however you end up gettin pot, just be sure to keep it in your trunk if you have to drive somewhere and not to act suspicious or nervous because no one knows or gives a shit really unless you buying under an ounce. id say just buy an 1/8th of some lower grade pot, if your dealer is really savvy, then tell him you want a strain that is an indica dominant... some of the 'better' pot, sativa strains, can be almost equivalent to uppers in the sense you can seriously keep lighting up and stay awake for 24 hours or more... it reaches a point though where being stoned and the work required to light another bowl outweighs itself though hahaha

yeah, i totally seem like a pot head now lol im not though... anymore =)

Posted on Apr 2, 2009, 12:04 AM

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Good info

by (no login)

Awesome. That's exactly what I was looking for. If I decided to get some, I have a couple of very convenient resources, but there are a few things holding me back:

1) I don't like being on drugs.
2) I don't have a lot of money.
3) I'm skeptical of its effectiveness
4) the apartment complex I live in has a zero-tolerance policy on drug use. My downstairs neighbor works for the apartment and whenever he smokes on his patio, the smoke blows right into my window, so he'd know right away what was up :) Also, I'm not going to drive somewhere, smoke, and then come home every day.

So, it's not likely I'm going to try it any time real soon, but I've had a few people now bring it up, and so I had to look into it. Thanks for the info.

Posted on Apr 2, 2009, 9:28 AM

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Re: Good info

by (Login paulqueen)

it shouldnt be terribly expensive... 35-50 bucks a 1/4 ounce or cheaper depending where you live, and that much should last almost a month or more if you only smoke one or two hits at night.

if you decide to give it a go just take one or two puffs and blow it through a hommade deodorizer. make one out of a paper towel tube, rubber band a dryer sheet over the end the smoke comes out of and stuff a buncha dryer sheets inside it, about 20 should do.. you could blow the smoke through one of those in the lobby of the police station and youd be lucky (unlucky hah) if they noticed.

make sure to tell us all about your experiments if you decide to do so at some point!

Posted on Apr 2, 2009, 12:33 PM

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not smoked, but taken in food or drink

by (Login patlittlejohn)
Moderators

you could eat it. when we did that, the effects could be much harder to control, but

i am absolutely sure there are websites about how to use it in tea, or baked.


a. it takes much less pot and lasts much longer

b. it is a much more "physical" feeling

c. takes a lot longer to kick in

d. takes a much cheaper grade of pot


and other differences, but it might be a smoke-free option.

if the smoke does not address your needs, you might like to try it orally. two entirely different things.



in herbal preparations, get good advice: tea is steeped, not boiled, and any herbalist will tell you, there are different active ingredients depending on how you prepare.

Posted on Apr 2, 2009, 1:54 PM

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illegal?

by (no login)

I think pot should be legalized and presecribed for medical purposes, but it isn't. That is a shame.

Posted on Apr 2, 2009, 12:08 PM

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Re: illegal?

by (Login paulqueen)

yeah, i think so too. i believe it should be decriminalized for the public also though and made like alcohol which basically means it'd be illegal except in private... so you couldn't get busted with it on you aside from if it was enough for sales purposes..of which there'd be no point anyhow by then. amsterdam has a great setup going on, and the thing with it is the percentage of people who smoke declined once it was legalized over a period of years. i think it should be taxed but i'm not one of the foolish people out there who think it will save the economy and such, if anything, it'd hurt the economy cuz of all the drug money being lost and lawyers and cops and such...but that'd just make em all hafta work harder and go after the real drugs like heroin, meth, and coke.

i always compare it for people who feel it isn't a good idea for some reason to the prohibition of alcohol. what happened then? people still did it, people started manufacturing it illegally, and violence ensued because there was money to be made. legalizing and regulating all drugs somehow would be a great thing in the end, because someone who doesn't want to do heroin because,hello, its heroin, the scourge of asia, isn't going to suddenly want to try it because its legal.. at least in my mind they wouldnt. and it would solve a lot of criminal violence issues on top of taking away money from gangs and such. i think it could be a good thing. i mean, at this point, our country should be willing to try anything since the war on drugs obviously gets a gigantic F for FAILURE. i'm sure they have statistics to prove otherwise so they can get one more year of funding though.. but look around, look at the youth, look at your kids or kids friends or grandkids and you are bound to find some very disturbing examples of how america's drug culture is ruining our society. crack alone has helped destroy a large portion of at least a few generations of families, the youth and parents included all the way to distant relatives when there are deaths.

i really feel that would change things A LOT for the better. not better because, hey, we can buy crank at walgreens, but better because you are bringing the dark into the light. what happens when you do that? the darkness turns to light itself. some people might actually come off of drugs by them being made legal and real help being able to be given instead of thrown in the middle of a cell to trade your neighbors dvd player for a rock.

gangs, interestingly enough, are another great example because gang history all starts with religion. all the older gangs started out at as religious, community oriented protectors essentially. there might have been a little violence here and there, but that will never completely disappear. but it was never senseless drive bys and murders on other gang members, it was political small scale rioting and protesting, and with some rascist groups the occasional beating of whoever it was they hate for that person being in their turf maybe. but around the later 70s when cocaine was in full blast and crack started becoming manufactured gangs became heavily involved in the drug trade.. which of course, made some people in the gangs jealous because they wanted the money, and thats when people start dying and each little punk with a gun thinks he is tony montana and its been all downhill from there.

..so why doesnt our govt realize this and do something? ..oh right, the CIA used to help bring in cocaine to america. look it up, it's since become public fact... the question now is are they still doing it?

okay, enough blah blah wolf wolf hahah

a nice super off the topic of N and C post is good for the digestive system

Posted on Apr 2, 2009, 12:59 PM

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Re: illegal?

by Nikki (no login)

I think it should be legalized too, but as alcohol is. Not because I think it is good for medicinal purposes. Face it, they are not going to prescribe smoking ANYTHING for medicinal purposes. The marijuana that is prescribed for proper medicinal purposes is not anything that you smoke, it is in drug form. For cancer only is it prescribed in the smokable form as the patient gets a permit to actually grow it on their own. They can only grow 2 plants at the most at one time and it is highly regulated and watched over by the Dr. and government. Most doctors will not prescribe it for anything because not only do they watch the patient, but the doctor too.

Posted on Apr 2, 2009, 7:59 PM

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Re: illegal?

by (Login paulqueen)

in oregon and california they dont watch it too closely cuz i got friends who have NO medical problems that managed to get their medical cannabis cards. the shops/grow houses or whatever are randomly shut down as the states themselves constantly overturn and reinstate the laws about it.

as far as smoking, it isn't bad because when it is for medical use they tell you to use a vaporizer, which basically is the same thing as inhaling steam...only nowhere near as hot. has to do with the chemical in marijuana (THC) in that it only needs to be heated up to a certain point to become 'activated' and using a vaporizer is just like breathing in air. it is pretty crazy, i used one in amsterdam because that is their preferred way to smoke (aside form hashish and tobacco cigarettes) due to the giant reduction in stress on the lungs and you get no tar or carcinogens because that comes from actual smoke from the 'waste' part of the plant being lit up, leaves and flower and such.

on another note...
i managed to pull a good 90 minute drive to and from a place i was playing music at tonight all by myself with just an mp3 player and some water and didnt have to pull over either time to quick nap. it was awesome. ...actually i have had a pretty good day so far with no nap or tiredness in general.. not saying i've had tons of energy, but no micro sleep or sudden sleep attack coming on. kick ass. maybe ill luck out and not wake up during my sleep too! it must be my birthday or somethin, hehehe

ttyl

Posted on Apr 3, 2009, 1:00 AM

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Re: illegal?

by Nikki (no login)

Awesome, those days are great...but you never know what day they will be.

Posted on Apr 3, 2009, 12:44 PM

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Re: illegal?

by (Login paulqueen)

yes. sadly though when i did try to get to sleep i kept having some super horrible demon type dreams that woke me up... i slept at my parents, so by the time morning came around, my sister was here with her kid and he is 2 1/2 years old so very into throwing fits and such all of which channeled into the room i was sleeping in..or tryin to sleep. bleh.

Posted on Apr 3, 2009, 2:07 PM

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love the good days

by (Login patlittlejohn)
Moderators

they give us hope.

Posted on Apr 4, 2009, 8:48 AM

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re: Pot?

by (no login)

If you grew up in the sixties as I did, you probably have smoked pot. My experience is that it gave me such a headache and sore throat that it wasn't something I did on a regular basis. The bad thing is, most of us N have a weight problem to some extent and smoking pot would definately create obesity in all of us. My smoking days were limited but I think I did get some pretty good sleep. I have a few die hard friends that still smoke pot. I absolutely do not have a problem with pot, but alcohol is another story, I wish they would band it like in the early days. I hate drunk drivers, lock them up and throw away the key. It is usually an underlying cause of domestic violence. It's just bad stuff in my opinion. I would rather deal with a person who smokes pot any day. Just think how much money our government could make by regulating it and lay off taxing cigarettes out of site. I'm tired of them picking on smokers and wanting them to pay, just because America has gotten on the non-smoking band wagon. What happen to freedom of choice and the pursut of happiness anyway. I think we ought to tax the golfers!!

Posted on Apr 2, 2009, 3:24 AM

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Re: Pot?

by Nikki (no login)

Nope, it won't keep you asleep. Xyrem works excellently and it is legal.

Posted on Apr 2, 2009, 5:14 AM

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Not for me :(

by (no login)

Remember, I tried Xyrem for a couple months, and at the max dose, it only made the room spin violently while I laid wide awake on my bed :)

Posted on Apr 2, 2009, 9:29 AM

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Re: Not for me :(

by Nikki (no login)

You would not get started out at the maximum dose (9 mg per night or 4.5 per dose) the first time you are prescribed. You would start out at the lowest dose (2.5 per dose or 5 total) and continue upwards until it works for you.

If it didn't work, you should tell the doctor to increase your dose.



Posted on Apr 2, 2009, 7:56 PM

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dose

by (no login)

I started at a low dose (I forget- 4g per night, I think), and over 2 or 3 months increased it up to the "maximum" dose of 9g per night.

The doc said she knew there were people out there who were taking more, but that since it showed no signs of making me the slightest bit sleepy, going from 9g to 10g or 12g wasn't likely to do the trick. And, considering that it took all my concentration not to vomit at 9g, we gave up.

Weird.

Posted on Apr 5, 2009, 10:47 AM

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Re: dose

by Nikki (no login)

Ok, I see. Sorry it didn't work out for you.

That is sort of what happened to me with Provigil. I was on the highest dose and it worked minimally. They said increasing it would not do any good. However, it worked much better for me with a combination of other drugs.

Posted on Apr 7, 2009, 3:45 PM

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Re: Pot?

by (Login patlittlejohn)
Moderators

not at all uncomfortable:

i was always around pot, and i know my varieties, strengths, and what to expect from them.

i have nooooooo idea how to get it anymore, but almost every part of the country is now considering medicinal availability.

it is unique in some ways:

nausea is turned off like a switch, appetite takes on new vigor (they arent kidding, it makes you hungry and makes stuff taste good)

not sure about sleepiness or sustained sleep, but concentration is very selective. you might focus on something you dont want to, but you could just enjoy music or gardening, that sort of thing. or eating!

you dont need to get zoned on it, there is such a thing as a therapeutic dose, and a light buzz, as well as getting to near psychosis. i believe there are people who obtain the same range of effects from alcohol and most meds, but

you dont hear much from them.

in my experience, you dont have to worry about the heavy effects if you are not somehow supersensitive to it (there are allergies, i hear). if someone keeps a rollie near them, say with chemotherapy, and just self medicates, they wont get weird.

i have been incredibly loaded before, and there are some psych and physical effects that are like N and C.

of course maybe it was N and C in me.

Posted on Apr 2, 2009, 1:34 PM

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Dreams: Escapism? Detachment?

by (no login)

My dreams are rarely nightmarish. I actually enjoy my dreams. In fact, I enjoy my dreams so much that I look foward to going to bed at night. The people and places do not actually exist, but the emotions/feelings I experience when recalling these dreams are surreal and fond. Is this some sort of escapism/detachment in as much I want to go to sleep so I can have these dreams, or should I stop looking a gift horse in the mouth and enjoy what I dream, or as a friend often says, "Hey, it's free and legal."

Posted on Apr 1, 2009, 9:36 PM

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Dreams

by (no login)

Enjoy they while you can. Before this economy gets better, they may start taxing them!

Posted on Apr 1, 2009, 10:33 PM

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taxes

by (no login)

I am surprised I am not already being taxed.

I believe what we are seeing is the beginning of a global economy...it seems the present administration is doing its best to weaken the nation and amke it necessary for a global economy which will then give way to a one world government, or as some call it a New World Order.





Posted on Apr 1, 2009, 10:56 PM

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The Times

by (no login)

When you look at the past ( up to the election ) Do you think - oh heck, they just got a bad break.

Posted on Apr 1, 2009, 11:30 PM

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times

by (no login)

The election got my attention more than what transpired in the past. It was unbelieveable how the media was in the tank for Obama but now are standing back and casting doubt on 'our' choice for president.

Posted on Apr 2, 2009, 11:34 AM

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Re: taxes

by (Login paulqueen)

i can see it as a possibility. would that actually be a bad thing however? doing away with the idea of "country" could solve a lot of problems, albeit, not instantly. and afterall, we all live on the same planet, so why not? ... of course there are the counter arguments to that as well such as totalitarianism..but totalitarianism can happen in a country on its own anyhow. i reference 1984 in that there were three warring super countries, ...or were there? as the book proposes. maybe there was just one big one... that is the scary thing, the whole whole 'well what if?'.

from waht i have read and watched, and experienced first hand when over there recently, europe and the EU have really got their shhh together. sooooo, if we planned a world government along the lines of the EU in that we are still ruled by our own country, there is an overlying govt as well. kind of how the united states has state laws and federal laws.

its been far too long of a day and its way too late for me to be anything more than semi-coherent so im gonna stop

glad that you are politically conscious. its people who are that are the only weapon we have against making sure another hitler/nazi type thing occurs.


Posted on Apr 2, 2009, 12:50 AM

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