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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.

Successful Journey

by Audrey (no login)

I had to drive from Austin to Houston for a training seminar on Monday. I have never driven that far or that long alone (for obvious reasons.) The trip was 3 hours and I was dreading every minute before getting on the road.
Well, I did it!!! I listened to an audiobook very loud the whole way and I was able to pay attention (as far as I know.)
I just wanted to share my excitement of accomplishing something I NEVER thought I could do.
Hooray me!

Posted on Apr 21, 2009, 8:41 AM

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hallelujah

by (Login patlittlejohn)
Moderators

well done, and now you have something you do not fear completely.

keep safe, dont kid yourself, but you dont have to dread it.

Posted on Apr 21, 2009, 10:35 AM

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Congratulations!

by Scarlet (no login)



Posted on Apr 21, 2009, 12:27 PM

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re sleep study

by sophie (no login)

hello im sophie..i have suffered from severe e d s for nearly twenty years now docs have always told me its depression..at end of my tether i cried to doc an told him couldnt take aymore an new doc sent me for sleep study..i had two where they found plm and rls have been treated for that e d s still remained so i am now off for a sleep study and my first mslt to check for narcolepsy..what i am wondering about is on the mslt did any of u feel awake but were told u had slept and gone into rem without knowing it?

Posted on Apr 18, 2009, 3:25 PM

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re: sleep study

by (no login)

yes, yes, yes.

Posted on Apr 18, 2009, 3:38 PM

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Re: re sleep study

by (Login paulqueen)

yes. totally.

i also went into rem around 30-45 seconds after sleeping each time when i had to do the 'napping' test the following morning.

Posted on Apr 18, 2009, 4:56 PM

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re sleep study replys

by sophie (no login)

thanks for your replys..so if you were awake and went into rem i thought you would know as you dream wen in rem and cant move or is it different if u have narcolepsy? im wondering as im worried i wont fall asleep in the time period in the mslt through nerves and on demand and i so want a diagnosis so i can start some treatment i cant carry on sleeping my life away.

Posted on Apr 19, 2009, 2:23 PM

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Re: re sleep study replys

by Nikki (no login)

Don't worry, you'll fall asleep. I didn't think I would either, but I fell asleep every thing within 30 seconds and went into REM within 30 seconds. I was also falling asleep during the times they want you to be awake in between.

Posted on Apr 19, 2009, 4:25 PM

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Re: re sleep study replys

by Anonymous (no login)

thanks niki i not so nervous now and ive spent half my life sleeping so shouldnt be a problem...i hope..will let u no how it goes.

Posted on Apr 20, 2009, 10:42 AM

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re: sleep study

by (no login)

Just keep in mind that the daytime MSLT is just one tool in dx N. It is not carved in stone. My first MSLT was done ten years ago. I too, knowing nothing about having N, my doc thought I had just sleep apnea, went to the night time testing with the understanding of the possibility of staying for the daytime test. I thought the same thing, I can't possibly take five naps on demand. After my night time polysomnogram I had no apnea episodes, so they kept me for the daytime test. It is difficult to fall asleep in a strange place, people watching, the bed is not your own, I just won't be able to do it. After it was all over, I was so amazed at the results. When they wake you from a nap, they ask a series of questions, like how long do you think it took you to fall asleep, did you dream, how long do you think you were asleep? For me some of my answers were, it took about a half hour to fall asleep, I didn't fall asleep, don't remember dreaming except one nap. I was absolutely amazed that the longest to fall asleep in one nap was four minutes, I thought I slept much longer than fifteen minutes that they allowed me. I had another sleep study two years ago because of sleep deprivation and shortness of breath at night. I had another polysomnogram and it confirmed some apnea episodes that have developed, probably due to some weight gain. I wasn't aware, and the doc didn't tell me he also ordered another mslt. Well I told the sleep testing person, that I had been taking sudafed and other meds for allergies and wasn't aware I was here for another day time test. So, my results were then inconclusive for N, because I only had 2 rem sleeps in five naps. The sleep standard is you must have at least have 3 rem episodes in 4 or 5 naps and a sleep latency of 4 minutes or less. Well of course this sleep doc got my results and then doubted my N previous dx and of course thought my whole problem was apnea, but wanted to give me anti depressants for my cataplexy. These are some of the pitfalls that come with testing for N. I think the most accurate is the spinal tap, measuring our hypocretin levels. We are not lab rats and can not be controlled as such. There are so many variables in sleep testing. Don't ever give up, if your MSLT doesn't prove N. I lived the symptoms for thirty plus years before dx and I didn't need the MSLT to prove anything to me, I just was able to put a name to my disorder. Our symptoms of cataplexy are unique to our disorder.


Posted on Apr 19, 2009, 4:45 PM

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Re: re: sleep study

by sophie (no login)

hi pam..Thanks for taking the time to write back to me youve really put my mind at rest those were the exact things i was thinking and worried about..im 34 now and have just slept and slept since i was 14 with no relief wen i am awake i can hardly think strait an feel as if i havent slept for days i get muscle weakness and varying degrees of sleep paralysis..my whole life ive hidden how much i sleep from people and just thought i must be stupid and lazy..and eventually after years of anti ds which lifted my mood but did nothing for my extreme tiredness i changed my doc and said i needed help..its been a long wait but i am going to st thomases hospital in a few weeks for my overnight and mslt will let u no how goes and thanks again for replying.

Posted on Apr 20, 2009, 10:40 AM

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Re: re: sleep study

by (Login patlittlejohn)
Moderators

Sophie, i totally agree with Pam and the forum gang. i want to really APPLAUD you for getting through 20 years of what you deal with.

you are my hero, a giant of a human being.


if this does not make sense, and advice seems hard to take in, i pray that you are diagnosed and begin treatment soon, and have just MIRACULOUS results.

I know what it was like when the fog cleared, and I was myself again!! OMG, I'M STILL ALIVE!


keep in mind:

sleep labs are privately owned and operated, for the most part. they are not regulated (much) and are a widespread standard for diagnosis anyway.

ask your doctor specifically: can he please get a copy of the DATA gathered during your study? interpretation is usually the only thing they send your doc, and you are relying upon someone else's knowledge and opinion.

you might also ask why you are being referred to that lab: is it because your insurer uses them? or because your doctor has a good working relationship with them?


based on those answers, put a limited burden of expectation on the sleep testing. spinal fluid analysis can be much more conclusive, but it is more invasive, and your doc may not even consider it.

my dx was based mostly on a blood test for HDL markers, which was a hassle, but by then i had experienced a total breathing arrest during paralysis in the MSLT. they freaked out.


also, dx can be based on the doctor's knowledge of your symptoms, history, and interviews with you and people in your life, and he CAN diagnose. if he says your sleep study is "borderline" "inconclusive" or anything like that, ask for his diagnosis based on what he knows.

if any doctor wants to "retest" ask them why? (keeping in mind all the above)


good luck, and God bless you. personally staying AWAKE alone in a quiet room, especially reading or watching tv, was impossible for me. the tech could not be bothered to keep me company, and my friend was not allowed to be there, so she came crashing in 3 or 4 times yelling "YOU'RE ASLEEP!!!"

well duh, that's the problem!



write anytime, email littlejohnquilt at msn dot


pat

Posted on Apr 20, 2009, 11:26 AM

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re: re: re: sleep study

by (no login)

Thanks Pat for laying it out much better than I do. I just want to add again, that don't be discouraged, it can be a long road. I'm going thru the same ole thing again at the Mayo Sleep Center in Scottsdale, Az. This is a research hospital and I certainly expected more and my first visit was so disturbing to me. I got the same ole responses, from an unqualified person, about the possibility of being depression, bipolar disorder, fibromyalgia or some other myalgia, even though they had copies of my previous sleep studies. We just have to stay strong and continue on and insist on a fair and impartial dx. I think because of the lack of people being dx, just adds to the rarity they claim and therefore how could YOU possibly be in the 3% of the documented population with Narcolepsy, as if there isn't room for the rest of us. I know what it's like going 30 years without a dx, as your life passes you by along with all the goals and dreams you may have had and seem to fail at every turn. There is always hope, faith and alot of prayer.

Posted on Apr 20, 2009, 12:40 PM

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Re: re: sleep study

by Nikki (no login)

Yes, but the spinal is not always going to show if you have narcolepsy.

Posted on Apr 20, 2009, 7:52 PM

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Re: re: sleep study

by Nikki (no login)

Pam, your test probably was not accurate, because the doctor didn't tell you about the test. You have to be off your meds for two weeks prior to the mslt for it to be accurate. So you probably were still taking your n meds because you didn't know about the upcoming test.

Posted on Apr 20, 2009, 7:54 PM

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Re: re: sleep study

by (Login patlittlejohn)
Moderators

i believe that N and C (Pam has both very severe), even when they are caused by physical trauma or immune system trouble,

shows up as a hypocretin lack in spinal fluid.

that test is the MOST conclusive, if you will search it.

Pam does not take any meds, and the testing has been done over DECADES. i agree with Pam, i have been sleep tested in over 12 different clinics in 5 states, and the inconsistent facilities, technician attendants, and data analyses just give me fits.


the only constant is that they are way over priced... and every kind of care provider and insurer puts way too much emphasis on them.

JUST because the standard of diagnosis has not been advanced in 30-something years, sleep labs are the great fall-back.

i suspect that a very good diagnostic (spinal fluid) is not recommended EXACTLY because so many clinicians assume like that dip stick at the Mayo Clinic, that "you couldnt POSSIBLY HAVE such a rare disease, so an extreme-seeming diagnostic test would be inappropriate".


This speaks to a "most conservative prognosis" process that makes narcoleptics go through decades of innappropriate and ineffective "treatment".

Posted on Apr 21, 2009, 4:40 AM

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Re: re: sleep study

by Nikki (no login)

The Stanford, Mayo clinic, and Fact sheet on Narcolepsy, etc. web sites all state that the diagnosis is CONFIRMED by the MSLT and do not mention the spinal testing.

http://med.stanford.edu/school/Psychiatry/narcolepsy/symptoms.html

http://www.mayoclinic.com/health/narcolepsy/DS00345/DSECTION=tests-and-diagnosis

http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm#129543201

http://www.sleepdisorderchannel.com/narcolepsy/diagnosis.shtml

Posted on Apr 21, 2009, 6:13 AM

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Re: re: sleep study

by Scarlet (no login)

I think you're missing the point.MLST can confirm the dx however when dealing with testing again and again and again like Pam has they should go another route to SUPPORT the diagnosis. No testing is 100%.


Specifically read about the CFS testing-

http://med.stanford.edu/school/Psychiatry/narcolepsy/faq1.html



Posted on Apr 21, 2009, 12:26 PM

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Re: re: sleep study

by sophie (no login)

thank u all for all of your information..i live in the south of england so will be tested in london at an N.H.S hospital in two weeks and am not so nervous now.

Posted on Apr 21, 2009, 2:11 PM

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Re: re: sleep study

by Nikki (no login)

I was just saying that the test is not confirming. It says "MOST people..." and all the web sites say that the MSLT is the confirming test. I was not ruling out the test entirely, I just don't think it is as reliable.

Posted on Apr 21, 2009, 4:32 PM

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Mayo visit

by (no login)

I was so upset yesterday after returning from the Mayo sleep appointment that I cried most of the night upon returning. I talked to Pat on the phone and feel much better this morning.

The good thing is that I had an appointment at the pain clinic for my upper back degenerative disk pain and they gave me two steroid shots in that area with pain meds and decadron. I am totally pain free this morning!!!!!!!!!!!! What a huge relief. I hope it lasts forever or at least a couple of months.

My appointment later in the afternoon with the sleep doctor, was pretty devastating and I'll have to elaborate later. I'm still pretty pissed off. All I can say is that I heard the same ole thing, about depression, bipolar disorder or some other disorders and that TRUE narcolepsy is so rare that only 3% of the population is affected and what makes me think that is what I have, even though I gave them copies of all five sleep studies with my dx. The doc even told me that cataplexy is apparent in two other very rare disorders. I was spitting nails by the time I left. They acknowledged my apnea, which is only apparent this past year in my sleep study and that must be whats causing all the problem. I pointed out that in the previous sleep studies and when I was 17 years old I did not have apnea. What about my HH, AB, sleep paralysis, cataplexy? I guess that can be explained away too. Of course they want another, their own sleep study done, well up theirs. The nurse practitioner, whom I guess was the intake person, was totally out of order in my opinion. The pulmonologist was a little better and said I had a lot of complicated circumstances and wants to make me an appointment with the shrink who's specialty is sleep disorders only and particularly narcolepsy. He said I was a good candidate for xyrem, but why would he say that if he thought I didn't have N. So many mixed signals. I'm confussed!!!


Posted on Apr 18, 2009, 8:00 AM

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Mayo Visit

by (no login)

Pam,
Its really hard to focus when you have as much difficulty as you have. Your first visit, in the morning, proved amazing! To be pain free, and so simply, I hope it continues to work.

I found a TV show that I enjoy, called The Seeker. Its fantasy with wizards and witches. Wouldn't it be fun to have that ability? All of the doubting Thomas, and nay soothers, Boy would they get a reality check. 30 days of living as we do, and they could chalk it up to education.

Its really tragic that a hospital, with their rep. could have its share of jerks working for them.

They have new small recorders that will record up to 16 hrs, without tape. All people with N. should have one with them, and turned on at all Dr.s meetings.

Posted on Apr 18, 2009, 9:34 AM

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Re: Mayo visit

by Nikki (no login)

Do your previous sleep studies show that your sleep stages are that of narcoleptic patients? (REM upon onset of falling asleep or within a few minutes.)

If they don't, that may be the reason behind the docs questioning your narcolepsy.

The only thing that totally absolutely proves narcolepsy is your sleep stages. They may be able to put off the cataplexy to be anything they want, but the sleep stages showing REM within a few minutes of falling asleep cannot lie.



Posted on Apr 18, 2009, 12:51 PM

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mslt

by (no login)

Yes, she just didn't look over my sleep studies. Apparently she can't read. I only had to take 4 naps, with rem in 3 naps. It took me 1 minute in two naps to fall asleep and the longest was 4 minutes. She said I needed an mslt, I told her it was in the paper work I sent to her a week ahead, obviously she didn't read any of it. The mslt is just one tool in determining N, I have falling down C and every other symptom, I certainly don't need the mslt to tell me that. I am more than willing to have the spinal tap, if they want to do that, but I'm sleep studied out.

Posted on Apr 18, 2009, 1:31 PM

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Re: Mayo visit

by Scarlet (no login)

Hugs to you Pam. I really was so hopeful things would have gone better. Are you planning to return or can all of it?

Just an FYI I was dx with N by a psychiatrist who specialized in neuro disorders. I found her to be awesome and understanding. She was the one who began my N treatment with ritalin. Although I stopped seeing her after finding a wonderful neuro who specializes in sleep disorders I will never forget the caring and compassion she showed me. So maybe just maybe the psych might be the one who gets it?

Posted on Apr 20, 2009, 11:17 AM

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Re: Mayo visit

by (Login patlittlejohn)
Moderators

yes! Pam knows this, and i have said it before: a shrink saved my life, believing me, seeing all my attacks in her presence, and knowing about N and C.

Posted on Apr 20, 2009, 11:28 AM

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re: Mayo visit

by (no login)

They are to my knowledge setting me up with the shrink. She is the same that Amy sees. She specializes in sleep disorders only, her interest is narcolepsy and according to the pulmonologist I talk too, she has written several published journal articles. I am holding out hope once again that this will go much better. But I'm taking Pat with me any way.

Posted on Apr 20, 2009, 12:45 PM

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Pat and Hope

by Scarlet (no login)

They go together like peas -n- carrots!

My prayers are with you on your next journey.

I think having Pat go with you is such a wonderful idea!

Posted on Apr 21, 2009, 5:57 PM

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Re: Pat and Hope

by (Login patlittlejohn)
Moderators

i promise to be good.

boy my dander got up when Pam called me, i SO ABSOLUTELY believe that we need advocates. and we are classical examples of why: when someone is in a position to crush our hope, we flake out, and then WHO will speak for us?

anyway, this time Pam is going determined, going to demand she only sees people who know about narcolepsy and being treated and living with it.

Posted on Apr 21, 2009, 7:15 PM

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Amen Sister!

by Scarlet (no login)



Posted on Apr 22, 2009, 5:56 AM

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Traditional + Homopathic + Medicine

by (no login)

I beleive there is a combination of new world/ ancient/ pharmacetical medicine that can be put together to help oneself. This will not cure but maybe make life easier.

Is anybody in the wake up gang using alternative medicine/ herbs/ minerals that seems to help them along with there medicine regement. I take 60 mg of Adderroll Xr a day + 3-4 cokes and can still get sleep attacks.
If you don't want to post, please email them to me.



Posted on Apr 18, 2009, 7:03 AM

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Re: Traditional + Homopathic + Medicine

by Lindsay (no login)

When I drink it, and I don't let me do it often, Red Bull really does give me wings.

hehehe

Posted on Apr 19, 2009, 6:41 PM

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Re: Traditional + Homopathic + Medicine

by (Login patlittlejohn)
Moderators

wild yam root capsules from General Nutrition Center, really helped me with anxiety.

Posted on Apr 19, 2009, 8:36 PM

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Re: Traditional + Homopathic + Medicine

by Scarlet (no login)

Sublingual B12 2500mcg 2 tabs under the tongue every 2hrs in addition to my adderall, coke, and coffee!

Posted on Apr 20, 2009, 11:21 AM

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Re: Traditional + Homopathic + Medicine

by Rhonda (no login)

When I can afford it, reishi extract is amazing at keeping me alert, and calm at the same time. Somehow I can feel it connecting the two sides of my brain where it feels it's falling apart.

I also use dark chocolate, but certain ones trigger cataplexy because they can be too strong.

Bach's Rescue remedy also is helpful when I feel the initial fuzziness or mild shakes in the joints preceding a cataplectic attack.

... Now I know what to put on my Christmas wish list!


Posted on Dec 1, 2009, 5:39 PM

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Phil

by (no login)

I truly understand your skepticism of doctors.

Posted on Apr 17, 2009, 9:56 PM

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In the morning

by (no login)

do you guys wake up with a feeling of dread in the morning? LIke what am i going to do with this day? not knowing if your body can take this ride of pills and no sleep for another 24 hours? it hits me sometimes in the morning to the point where i feel physically sick, or dizzy(cata). I get up and everything around just seems dark, and hopeless, and mundane. When this is happening I know its not me, its the chemicals i don't have, or the sleep i have not gotten, or the pattern my thoughts have learned to follow, but oh dear by this time I can feel my heart playing some of that terror out. This morning was not like that for me, but a few times this week was. and its so hard not to put your faith in substances because for everything else we put faith in those chemicals to get us through the day. To much thinking, thinking thinking thinking. Narcoleptics have been to a place and seen things that the human was not created to see or experiance. There is a reason humans go paralyzed when they dream. There is a reason were supost to go through 4 sleep stages before entering into REM. The unexplaineable damage it does is what we have to deal with each day.
Lately i have seen a few war movies. When the boys or men are in a war are seeing dead, bloody bodies everywhere and having to kill themselves, they lose something very human inside of them. You can see it on there faces when they are in the middle of battle. They have a look of being frightned but also a numbness. As i was watching these It hit me that these boys(or any human) were never supost to see this type of death(or death at all), the human spirit simply can't go back from those images of horror. but above all else they can't cope with the unnaturalness of dead bodies in front of them, with there regular everyday life.
I said all that to say, I noticed a common thread between men of war and narcoleptics. We both have seen parts of hell with our own eyes, things we were never created to see, and its hard to reconile those things with regular life.

Hope that made some sence

Did you guys now Jimmy Kimmel is a narcoleptic. How awesome would that be if I got him to be in our documentary?

Posted on Apr 17, 2009, 7:39 AM

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Re: In the morning

by (Login paulqueen)

yea, it made a little bit of sense.

the main correlation between people in the military, especially anyone who has been deployed knows this, is the sleep deprivation thing. my best friend, and then also my ex drummer recently, are both marines. neither have ever gave me shit about sleep problems ever since they joined the marines because theyve seen what sleep deprivation does to someone and wonder how i can manage to go each day without being a marine.. of course, i tell em its becuz im a jedi. hahaha

i feel pretty strongly about the 'stuff we arent meant to see' as you put it, is something that really is there only we are experiencing it the wrong way. the 'ether', other dimensions, spirit world, etc. you can get those experiences in varying effects through transcendental meditation, certain drugs, and i see no reason why sleep deprivation and all the things that come with it to be any different. falling asleep backwards as it were and having sleep paralysis and HH really seems theoretically to me to possibly be your brain flipping through different levels of consciousness and somehow crossing the 3rd dimension with parts of other dimensions we arent made to experience in waking consciousness but reserved for heavy meditation or prayer or even death. ive been into this kinda stuff, lucid dreams, etc, long before i ever had sleep problems btw.

i think a lot of you, if you haven't seen any of this work, will find it compelling due to our unique experiences mentally, and you may connect with and understand in a sense the metaphysical subject matter... check these out...

http://www.alexgrey.com/gs.html
specifically the 'progress of the soul' series.

Posted on Apr 17, 2009, 1:24 PM

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Re: In the morning

by (Login patlittlejohn)
Moderators

Jimmy and Hugh Laurie!

i agree, Amy, that look in the eyes is well documented in warriors, and i see the similarity with us.
I have a great subject in Jim, as you know. did i tell you he was talking story one night and i was googling what he told me...

and up popped a picture of him at about 19 in dirty fatigues carrying a gun... the Walking Dead, he was a navy corpsman with the marines. he looked at it, and said, "hey yeah i offered to shoot that photographer dead if he didnt leave me alone"

and i compare that picture to his high school graduation, and the eyes of his home self are gone, and were gone already at 19.

another thing: Audy Murphy was a movie star after his distinguished service in WWII. he could really act, but he could not do closeups looking directly at the camera, because of the coldness in his eyes. really sad.


what is a lasting legacy for vets is a) they have trouble reintegrating, as you said, into a world where normal and acceptable are still within human capacity. now i believe many vets who HAD careers, families and real stature in their community are falling silently out of sync, to be homeless, destitute and totally invisible to society; we meet so many homeless vets who HAD the life they were "supposed" to.

and b) i notice that they and people with N and C have BEEN to the brink of madness and destruction, and we are damned afraid to go there.



Posted on Apr 17, 2009, 7:54 PM

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faith in meds

by Scarlet (no login)

It's the only thing I have to go on these days, without them I cannot function properly. I can really tell the difference if I skip a night of xyrem or skip a dose of adderall.......I don't know how I did it without.

Posted on Apr 21, 2009, 5:59 PM

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Re: faith in meds

by (Login patlittlejohn)
Moderators

Honey,

I made real progress while i could get meds, they made a huge difference even now.



Posted on Apr 21, 2009, 11:05 PM

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Pat

by (no login)

hey pat i never thanked your for all those posts you sent me. I have sifted through most of them i think. You have been such a blessing to me, I'm not just blowing smoke up your butt. Your kindess and willingness to help has been one of a kind. I know its hard for us to help people. We want to help so bad, even though its usaually what gets us into trouble becuase we end up not being able to fully help, and that eats away at our personal moral over the days, weeks, months,years. So I wanted to say thank you again. you have been more help then you realize.

Love Amy

Posted on Apr 17, 2009, 7:07 AM

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Re: Pat

by (Login patlittlejohn)
Moderators

thanks, Dear, as i really tried to gather up concentration and strength, i marvelled that you are taking this on; you go through what i do, and i give you a lot of credit.

i still want to help. that was not very effective searching, but i have not given up.


how about setting up something delightful for morning, that you really can look forward to. we often just skip PAST panic, and go on our way.

i look forward to coffee, and of course Jim.

Posted on Apr 17, 2009, 8:10 PM

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sleepless in AZ

by (no login)

This is my third really really bad night of fragmented sleep. I should be a great specimen for the sleep clinic at Mayo later this morning. I am so looking forward to seeing a doctor that actually is part of a research team at the Mayo clinic. I'm probably kidding myself and dreaming of some miracle that isn't there for all of us, except drugs, but never the less hopeful. I just pray for one restful night sleep and a wide awake morning with the birds singing and the sunshining. My biggest concern anymore is the cataplexy. I have a new one to add to the list. I was getting a glass of ice water, the ice was all stuck together in the bag, so I got out my metal ice cream scooper to give the ice a blow to break it up and as soon as I hit the ice, I dropped to the floor. Now really how emotional can one get breaking up ice?

Well off to bed I go for a couple more hours, before my husband gets me up at 4 am. We have a three hour drive to Phoenix for my appointment at 8:30 am. Hope the rest of you are fast asleep, dreaming beautiful dreams.

Posted on Apr 17, 2009, 1:56 AM

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Re: sleepless in AZ

by (Login patlittlejohn)
Moderators

God bless, Pam. You and Bob are in our thoughts so often, and if there is help out there, it gives everyone hope.

can you give me a call?

Posted on Apr 17, 2009, 7:05 AM

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Arm and leg jerks

by (no login)

when falling asleep at night,my arm or leg will jerk.This will also occur anytime during the day,if I start daydreaming or zoned out.Could I be falling asleep with my eyes open? Is it possible to do that?

Posted on Apr 16, 2009, 5:33 PM

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Re: Arm and leg jerks

by Lindsay (no login)

I think microsleeps will cause that (during the day anyway). I get jerky sometimes... especially my legs with the RLS. My hubby (though he doesnt have N) does the arms and legs jerky thing when he's falling asleep. He DOES sleep with his eyes open sometimes its the creepiest thing. Then they get all dry and red and he'll REM YUCK. haha

Posted on Apr 16, 2009, 9:44 PM

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jerks

by (no login)

That's PLMD (periodic limb motion disorder). And yes, you can sleep with your eyes open. You can even be asleep while continuing an activity ( automatic behavior ).

Posted on Apr 20, 2009, 7:17 PM

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Re: jerks

by (Login patlittlejohn)
Moderators

Done that, and my picture is on the t-shirt!


hugggs to Vickie


ps. i had to laugh at the title "jerks"... thought it was about clinicians



    
This message has been edited by patlittlejohn on Apr 21, 2009 4:44 AM

Posted on Apr 21, 2009, 4:43 AM

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writing and talking

by Nikki (no login)

Anyone ever fall asleep while they are writing? It is pretty funny. I used to fall asleep in school while taking notes. My writing got real tiny and scribbled looking.

Also, what about while you are mid-sentence? That is a good one too. I have fell asleep trying to talk about something and then didn't remember what I was talking about.

Posted on Apr 16, 2009, 3:38 PM

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Re: writing and talking

by (Login paulqueen)

havnt done the talking one... definitely did the writing one in school though. and still do if i write late at night.

you start writing out your dreams? id start to do that, and itd trail off into scribbling i couldnt read.. its pretty funny. think i still have some notebooks with a few pages in em that are like that.



Posted on Apr 16, 2009, 4:19 PM

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writing and talking

by (no login)

When N. first effected me, and before I started med. I would be eating and my mouth would be open and my fork would stop half way to my mouth. My eyes were open, but I was not behind them. It would only last for a few seconds.

Posted on Apr 16, 2009, 9:23 PM

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Re: writing and talking

by Lindsay (no login)

I zone out while I talk sometimes... just go completely off in a different direction or stop talking altogether. Definitely microsleep while writing... And I've had full naps while walking (helps to have my hubby guide me to where we're going while I sleep haha)

Posted on Apr 16, 2009, 9:45 PM

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re: writing and talking

by (no login)

AB is one of my worst symptoms. I sew and quilt in my sleep. I don't notice all my mistakes until the next day when I pick up where I left off. Thanks to my husband he is the official ripper outer. When I worked at the hospital I would write on patient charts, something unrelated to what I was suppose to be charting. I would wake up during lunch with a mouth full of unchewed food, luckily I didn't choke in my sleep. The talking always amazes me because my friends will get this really puzzeled look, when the subject changes in mid sentence, or I just blurt something off the wall then stop talking and wake up.

Posted on Apr 16, 2009, 9:54 PM

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Re: writing and talking

by (Login patlittlejohn)
Moderators

yes and yes

Posted on Apr 16, 2009, 10:14 PM

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Yes, jibberish is my second language!

by (no login)

There's not much I haven't fallen asleep doing. Which wouldn't be quite as bad if I didn't keep right on doing it, and not very well, I'm afraid.

Posted on Apr 20, 2009, 7:25 PM

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dreams be dreams

by (Login paulqueen)

i had a strange dream. it was slightly lucid. it involved being on vacation with my sisters, mom, dad, and one of my aunt/uncle's family. we were in florida, and the way it went made it seem familiar. as if i were time travelling back into one of my own memories. i was trying to change something or prevent something. cant rememnber exactly. it had something to do with one of my sisters renting a 2nd hotel secretly and filming homemade films with some chicks she met from florida and i had managed to get a key to her secret hotel room. the guys her and her newfound floridian friends found out about my plot and chased me down in the hotel, or tried to at least, and someone else, a door greeter person, also tried to stop me.

by the time i actually reached the door to do what i came to do, things started gettin distorted and i saw the sides of the people whod be chasing me slowly seem to melt and burn without fire or smoke. then i started to feel myself do the same around the side of my chest. and then their faces started to distort and this weird sound which the best way i can describe it is it was like taking the sound of someone screaming and then playing it back extra slow while it is being sucked into the void of a black hole... backwards.

then. i woke up.

www.dreamjournal.net
incase anyone else is interested in joining. i just joined. figure it cant hurt to keep track of em when i can for future reference and sharing and stuff.





    
This message has been edited by patlittlejohn on Apr 17, 2009 7:35 AM

Posted on Apr 16, 2009, 5:33 AM

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Share

by (no login)

Since your sharing, I assume your sister was FIRST on your list!

Posted on Apr 16, 2009, 6:36 AM

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Re: Share

by (Login paulqueen)

lol

probably SHOULDVE been haha



Posted on Apr 16, 2009, 12:49 PM

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Re: Share

by (Login patlittlejohn)
Moderators

LOL

wondered what GEM would say, and i was not disappointed!

Posted on Apr 16, 2009, 1:50 PM

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Re share

by (no login)

Have I been Pegged?

Posted on Apr 16, 2009, 9:14 PM

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Re: Re share

by (Login patlittlejohn)
Moderators

oh Sweetie!

i knew you would have just the right response.

as for our dreams, we really have no control over them. they are what they are. i wish mine were more fun.

Posted on Apr 16, 2009, 10:08 PM

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re re re

by (no login)

The only thing I was suggesting we control, was compromising remarks about our loved ones or relatives.

Posted on Apr 17, 2009, 12:53 AM

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300 mg provigil - day one

by (Login paulqueen)

within a couple minutes of taking the pill i felt a little anxious, i admit, mostly from having read the label and all of the side effects to possibly watch out for.

i then ate a huge bowl of oatmeal with brown sugar and raisins, an orange, and a few oreo cookies.

about 30 minutes had went by and i was starting to feel the pill working it's magic.

i went to my room and hopped online for a bit, anticipating the usual come down from (a) being awake for nearly an hour and (b) having ate a decent breakfast that included a decent amount of sugar as well. no sleepiness yet. i had a few sort of forced yawns, but they didn't make me feel tired or anything. i sat there and took turns texting on the phone and playing guitar.

it was now closing in on that magic time frame window of 4 to 5 hours of being awake where i almost ALWAYS have to take a nap at some point or else face the consequences. but still, awake and energetic. i felt like i had drank a couple cups of coffee.

i ended up leaving and heading to a friends house as a stepping stone to meeting up with my drummer who lives about 40 minutes outside of town. upon arriving at my friends house, it had been approximately 4 1/2 hours since i took my pill. at this point, i was REALLY feeling it... in fact, i was REALLY REALLY feeling it. i felt jittery, extremely talkative, kind of like having drank a ton of espresso to the point you have to stop. i was having some anxiety come and go, as well as very slight paranoia/nervousness feeling. these feelings slowly escalated and around hour 5 i decided to have a beer to hopefully curb them and slow things down and mellow me out. i had a beer rather quickly, then started a second one which i sipped on for a good half hour. it seemed to help a little bit, maybe just in the sense it gave me one more thing to focus on. i think if id been at the gym or at work id have been fine. peppy and speed, but fine. otherwise it was a tad uncomfortable. i had felt id calmed down enough shortly before hour 6 and decided to head to my drummer's.

i was on the road maybe 15 minutes before i pulled into a gas station and got a big thing of water and a granola bar, hoping throwing more food and water into my body would help chill things out a bit because they became more intense as i got outside and on the road by myself. talking to people felt strange, kind of how it is when tripping. like a sort of 'do they know..' type paranoia vibe. not a serious and dangerous paranoia, just the weirder subtle kind of inner thought train where you are focused on something else if tha tmakes sense. like a small dose of LSD, if that helps any of you for a description of what i'm trying to relay.

i ended up turning around and taking the longer and less trafficked roads way to my parents instead of heading ot my drummers. it didn't feel right driving. i am sure i couldve done it and been fine, but i didn't want to risk it. i felt speeded out of my mind basically.

other than it seeming like my dose was a wee bit too strong, i didnt experience any other side efffects except a very very mild headache that came and went a handful of times and lasted only a minute or two each time.

i felt my metabolism come to life as well which was awesome. i had forgotten what its like to eat food and have your bodys digestive system actually seem to be awake and doing its job properly.

so that is all. i'm going to call the doctor today to see what he says, if i should stick with it or just try a half of a pill instead.


Posted on Apr 16, 2009, 5:20 AM

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Re: 300 mg provigil - day one

by Nikki (no login)

Yes, I am a little surprised that you started off on that strong of a dose...the dose I started on was one 200 mg pill, then increased to 1 1/2 pills (300 mg.), then on to two full pills (400 mg.).

Provigil is pretty awesome though.

Posted on Apr 16, 2009, 5:43 AM

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Re: 300 mg provigil - day one

by (Login paulqueen)

did you build up a tolerance to it? if so, how fast did that take to happen?

are you still on it? and another follow up of - if not, are you on anything now?

Posted on Apr 16, 2009, 12:50 PM

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Re: 300 mg provigil - day one

by Nikki (no login)

Yes, eventually I built up a tolerance. But what I did was not take it on the weekends so that it would work better during the week so I could do my job.

I am still prescribed provigil, but I can't get it right now because we don't have insurance. If we get insurance back, I can get back on it.

I will probably have to start off again on a smaller dose at first.

Right now, I am only on ritalin because that is all I can afford. I used to be on provigil, xyrem, and ritalin AND I was practically normal then.

Posted on Apr 16, 2009, 3:33 PM

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Re: 300 mg provigil - day one

by (Login paulqueen)

oh wow. im sorry to hear that.

i hope that you get insurance soon.

id send ya a few but thatd prolly just be like a teaser or something.



Posted on Apr 16, 2009, 4:09 PM

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dosage

by (Login patlittlejohn)
Moderators

actually, 300 seems like a good healthy wallop of provigil, especially at one time.

the most i heard of was someone taking 800 per day, years ago. i believe it was after ramping up over the course of time, to get better results.

i believe the max recommended dosage is lower now. i was only ever presribed 200 a day, and it was a constant therapeutic benefit, i never became resistant or anything.

fiddle with the dosage on your own, and then present your own results to the doc for any changes.



also, your diet will change, i needed a lot more protein and did not tolerate starches much.

if you used to grab a granola bar, you might want to grab a chicken strip now, and see how that fuels the metabolism/clarity. it is alot less convenient, but there are ways.

nuts, cheese, other proteins are not as 'quick' for me, but still cant do the jelly doh thing.



    
This message has been edited by patlittlejohn on Apr 16, 2009 2:01 PM

Posted on Apr 16, 2009, 1:58 PM

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Re: dosage

by (Login paulqueen)

thanks for the input again..

and yea, 300 was definitely considered a wallop in my mind hahah
i just went with taking a half today and so far have been good.. i didnt feel like i drank a buncha coffee yet, just, awake and stuff. we'll see in a few hours if that changes for better or worse though.

as far as my diet, we'll see how that goes. i assume i will be good in that department cuz i drink 3 protein shakes a day and eat at least one or two freshly prepapred meals with tons of good stuff.. fish, chicken, brown rice, veggies, fruits. i think my metabolism has just been asleep the last year and thats why i gained weight so fast cuz i didnt really change my diet much since ive been 19 and its always done me right. the protein shakes are a newer addition however, wihin the last 6 months when i started working out again hoping to lose weight... to no avail. BUT NOW ! ahh provigil, make me slim and sexier again please!! hahah

if i notice anything like lack of protein ill prolly just throw in an extra shake each day.

.. and ya know what.. if i stick with taking half a pill each day, and dont say anything to my doctor, i could feasibly accumulate a stockpile and send em out to some of you who cant afford it and dont have anything else to take its place... my insurance is covering the whole thing thankfully and i will be able to get 30, 300mgs, every 30 days as it stands...

not the most legal idea ive ever had, but not the most illegal ive ever had either hahaha


Posted on Apr 16, 2009, 4:17 PM

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Re: dosage

by Nikki (no login)

I was losing protein before I was on any drugs. I had a high white blood count also, the doc said I had a B vitamin and Iron deficiency. So I also have to be on B shots once a month forever.

Well, I started taking amino acids that I got at GNC after about a year of taking those shots. Then the next time I went to the doctor, my blood count was normal.

What kind of protein shake are you talking about?

Posted on Apr 16, 2009, 5:26 PM

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Re: dosage

by (Login paulqueen)

do you have chrons disease?

i have a friend who has it (very bad actually) and he cant absorb vitamin B and some other stuff.

i just get whey protein. nothing added to it. i take no other supplements aside from a daily multivitamin. i used to take liquid vitamins, but i no longer have that job and had to cut a few things from my budget...and those are expensive. basically a dollar a day... well worth it however.

i buy my protein online, i forget the website. american wholesalers or something, a very generic sounding name... you can find it if you look, or find another site similar. its very cheap when you buy in bulk. a 3 lb thing at GNC is like 40-50 bucks i think depending what brand you get, and the thing i bought was 12 lbs and was like 64.99 plus shipping and it ended up bein around 70 or so.



Posted on Apr 17, 2009, 1:07 AM

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Re: dosage

by (Login patlittlejohn)
Moderators

i would try the dose he suggests, at least for research into your own treatment optimum, just in two doses per day.

although i noticed a definite noticeable serum level from continued months, it seemed to let me down during a 24 hour interval of one big pill, and i would get flaky,

and i did not "withdraw" or feel sick when i stopped taking it,

just interesting info to me.

Posted on Apr 16, 2009, 10:12 PM

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Re: dosage

by (Login paulqueen)

well today i took just a half a pill and it seemed to be almost perfect for me. im going to see how that works over the weekend, cuz thats when i work and really kinda need the help more than any other time. no naps or anything today, no sleepy spells.. i am feelin drowsy right now, but its 4 a.m. and is expected.

i dont think i can really make myself take a whole 300 mg pill again. that was tooooo much and made me feel uneasy and uncomfortable and borderline crazy. i might end up trying it split up though, like take half in the morning and half later... but im a little anxious about that even just cuz i dont wanna feel again like i did on the whole pill at once.

what do you mean by serum level? just feeling normal or not, or you mean somethin else?

Posted on Apr 17, 2009, 1:12 AM

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Re: dosage

by (Login patlittlejohn)
Moderators

keeping a steady level in my system, it really kept other things like fragmented sleep, cataplexy and muscle weakness under more control, so they did not snowball and all come back under, say, a little stress or something.

good luck. if you squirrel extra provigil away for a rainy day, the freezer or refrigerator in airtight containers might keep potency. but after years of fiddling with it, i find you should TAKE the fresh stuff, and not try to rotate leftovers.

that is, taking the most potent and effective drug as the scrip is refilled, is worth much more than storing the current prescription and using up left over pills first.

you rob yourself of some of the benefits and "normal" life you are trying to get back.



Posted on Apr 17, 2009, 7:11 AM

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Re: dosage

by Nikki (no login)

My doc said I could split up my dosage because I was talking two 200 mg per day. So I took one when I woke up and then the next about 4 hrs. later.

You could try 1/2 of your 300 mg. pill in that manner and see what happens. That way the medicine will last longer into the evening and you won't be ready for bed at 6-7 pm.

Posted on Apr 17, 2009, 12:07 PM

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Re: dosage

by (Login paulqueen)

yesterday, the second day of taking provigil, i took only a half a pill and it seemed to work beautifully. i was awake and going good with energy from about 3 p.m. when i took it up until around 2:30 a.m. or so...which is just fine by me cuz it meant i could get to sleep at 4 or so which is somewhat usually on a thursday for me.

today and this weekend will be the ultimate test for how well a half a pill does though cuz i hafta go to work earlier than im used to waking up and also work for 10 hours two days in a row so if it does me good that whole time then im stickin with half a dose for now. normally when i have weekends like that, 2 or 3 times a month usually, i end up needing a nap about twice, sometimes three times, or else i go into a microsleep/auto behaviour routine...which i really dont like doing at work. its kinda embarassing too.

i slept pretty well last nite too amazingly. i woke up feelin kinda refreshed. i still wanted to lie in bed, but i think thats just part of my nature when i have nothing important to do for awhile that particular day.

Posted on Apr 17, 2009, 1:05 PM

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My N Attack Last Night

by Lindsay (no login)

So... last night while my husband's friend was here it was getting realllly late. I needed to go to bed but didn't. So then I started having my narcolepsy attacks... where my brain just shuts down...dream mode...drunk mode... acting like a small child.

Usually I don't remember much...but sometimes I remember bits like a dream. I have proof of what really happened this time.

Hubby needed to bring the friend home and tucked me in to sleep on the couch. Apparently that wasn't good enough. He came home to find me "making art projects"... I had dug out my paper and markers and gluestick from my closet and had taped up all my "art" to the wall! I have drawings of cats, a really horrible portrait of my husband going to work, scraps of paper glued to other scraps of paper and one decent scrap of paper picture in the shape of a flower. They all look like a three year old drew them! lol I'm actually a pretty good artist usually but these are stick figures and scribbles.

So I don't know why NarcoLindsay thought this was a good idea, or an appropriate time for self-expression but that's what I did in probably the hour he was gone.

Felt it was interesting enough to share. Sorry if it's not :P

Posted on Apr 15, 2009, 2:16 PM

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Re: My N Attack Last Night

by (Login paulqueen)

so you physically do stuff in your narcolepsy attacks?

is that usual for you?

normally i am zonked out, or staring through nearly shut eyelids and THINK i was awake and seeing things...



Posted on Apr 15, 2009, 2:30 PM

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Re: My N Attack Last Night

by Lindsay (no login)

Yeah, a lot of times I think it's time to get ready for school or work... or I just want to go outside. My husband can spend hours chasing me around the house making sure I don't go out or hurt myself. I talk and act like I'm either a small child or drunk or something, I'm not really logical and am very stubborn. I don't usually remember it apart from bits and pieces (although there are exceptions). Sometimes I seem to be hallucinating... sometimes I get really extreme emotions, like I just kinda freak out, or I think my husband is a bad guy and I either run away from him, or if he's trying to catch me or something I hit him and stuff. I'm not very nice during these sometimes.

Not the same as my cataplexy attacks that either involve seizure-like episodes (I think I'm in and out of paralysis so fast it just looks like that), sometimes my head droops or maybe just my face feel droopy, sometimes I just lay and can't move.

Both though tend to end with a nap, although the C attacks' naps tend to be more brief. I get the other ones when I don't get sleep when I need to.

Posted on Apr 15, 2009, 3:56 PM

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re: my N attack last night

by (no login)

I usually do things like that during my bouts with automatic behavior. I'm just so overly fatigued and fighting sleep, I may start a project, thinking it'll keep me awake (wrong) and I just continue to do it in my sleep. They always look as if a child has doing these things.

Posted on Apr 15, 2009, 9:39 PM

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Re: re: my N attack last night

by (Login patlittlejohn)
Moderators

i have almost no memory of AB projects, and even those bits i dont trust myself to remember or imagine them...

really telltale evidence like a burned pan of (canned pumkin?) set aside on the stove, or laundry in the freezer... usually scares the h3lloutta me.


still laughing at "so NarcoLindsay thought it was a good idea"


these things are SO much better now, until the heat will make everything harder. i think i have a peaceful husband to thank.

Posted on Apr 16, 2009, 2:19 PM

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modafinil / provigil ... questions..

by (Login paulqueen)

so i finally got my prescription today at the doctor's office. take one 300 mg provigil each day, come back in six weeks and see how its going...

my question btw is it says to not drink alcohol with provigil... does anyone know how serious this is? xanex and vicodin for instance both say not to drink while on them, but i still do anyhow and i'm not dead yet...granted, i drink less because it intensifies the effects. any input on this would be lovely because i am a fan of drinking and really really don't wanna hafta quit entirely. thanks ahead of time for any info.



~~~~and now... the babbling part of my post.. you're welcome for the division of the two lol~~~~



it was later in the afternoon when i got the script filled so i'm not starting it until tomorrow. plan on letting everyone know how it goes for me after day one, then day two, then a week, and two weeks. i figure two weeks should be long enough to give it a fair try and see if it will or won't work or make me have rectal bleeding or whatever the side effects could be lol

also, i got to hear about my results of my most recent sleep test after which they kept me longer and had me take multiple different naps... and i hit REM in 22 seconds one of the times...the rest were all around 30 seconds to 2 minutes. anyone got a faster score than me? maybe we can all get together and have a race, like, a REM-off or something sometime with a trophy and whatnot haha.. j/k... but i gotta at least laugh at the stuff going on.



Posted on Apr 14, 2009, 7:01 PM

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Re: modafinil / provigil ... questions..

by (Login patlittlejohn)
Moderators

wtg, glad you got the scrips in hand.

and i may hold the land speed record for REM, counting the dreams i am already having when i fall asleep.

i like provigil, so realize i have that bias. 300 mg a day sounds peachy, it may take a few days to hit a nice running serum level, but you wont feel weird if you miss schedule.

heart thumping kind of comes and goes for me. alcohol wont be enough LIKE the provigil to be dangerous, i think.

and if you find you are sleepy 8 to 12 hours after your dose, i used to break my 200's in half and take them about 10 hours apart.

slept like a baby, too, even if i forgot the pill until bedtime. it really helped everything for me.

Posted on Apr 14, 2009, 8:57 PM

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Re: modafinil / provigil ... questions..

by (Login paulqueen)

thx. and you def know how glad i am that i got em too!

heart thumping as in rapid heart rate, arrhythmia, angina? what are we talkin here? i take my heart more seriously than i take my sleep amazingly.

thx for the tip. i thought 300 seemed kinda up there, and was considering half dosing myself as it is already since i saw the max is 400. we'll see how it goesthough...

what do you mean that alcohol wont be enough like the provigil to be dangerous? ive read on erowid.org of people drinking on it and not having problems, and that its just on there becuz they havent researched it and the company that makes it just uses it as a disclaimer so they can cover their asses. i didnt ge ta chance to talk to my doc directly today unfortunately cuz he was needed at the heart center, i just got to talk to the nurse and she didnt seem to know enough to answer questions bout it.

i plan on asking my doctor, but figure you guys are all about just as trustworthy as him as far as what to expect from this pill.

it sonded like you were saying you dont take provigil anymore? whys that?

Posted on Apr 14, 2009, 10:45 PM

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Re: modafinil / provigil ... questions..

by (Login patlittlejohn)
Moderators

yes, and my heart just lifted when i heard you have the scrip IN HAND, and no one is obstructing you.

the price of provigil has been artificially conspiratorially made so expensive, (300 mg must be over 10 dollars per pill)

that many insurers will not cover it, people cant even afford the copay, and as for medicaid they put it through a wicked series of prior authorization loopholes.

i cant get it anymore, more than 2 years.


what i meant about its action with alcohol, and we have many people here who understand pharmacology and chemistry better than i do:

it is not a central nervous system depressant, not an antidepressant, so i would not expect provigil to INTENSIFY the action of alcohol.

besides, my system got along great with provigil, so i got very "normal" effects of other substances.

heart pounding might scare you more than it does me. it never killed me, and my heart has had some damage from disease.

if your extra effects are not bad, i would at least give provigil a week to level out.



Posted on Apr 15, 2009, 7:38 AM

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Re: modafinil / provigil ... questions..

by (Login paulqueen)

yea, i read some of the stuff on here about cephalon and their b/s with them... pretty shitty.

so far i think my insurance is covering it. i have insurance through the state of indiana. they started it a couple years ago to help out people who make under a certain figure, like 25k or so per year. ive been pretty damn fortunate and realize that now after being on here and reading posts from the past where people havent been able to afford shit. definitely gonna be in my thoughts and prayers each day that i lucked out as i did apparently.

sorry to hear you got yours cut. i bet there are *ahem* street pharamcists that can get it to you cheaper than 10 a pill, jeez. hopefully someone else starts making it.

and thanks for the alcohol input. ill still take it easy at first to gauge any differences to be safe when drinking.

so far i havent noticed any side effects. i took it about 2 1/2 hours ago or so. i was a little jittery anxiety feeling instantly, but i think that was just cuz im tryin some new drug and coupled with reading the possible side effects flyer with it... one of em seriously says cracked, burning, peeling, or bleeding skin. or something to that effect. i was like 'WTF!' haha.. i thought dirarrhea was a bad side effect lol

thus far, i have managed to eat a big breakfast of oatmeal with raisins and brown sugar added to it, a few oreos, some milk, and an orange.. normally after eating much more than a snack, like a piece of fruit or a bowl of cereal, i am ready to nap for another 45 minutes shortly after. so im goin strong still at the moment. i feel somewhat focused, and when im not doin anything i feel a tad jittery like i just drank a quad espresso shot mocha...but overall i havent noticed anything yet.

very slight headache for a short term, but i can rule that out to about anything for now.

i havent had any heart pounding, and yes that stuff creeps me out a little. ive had it happen before from doing illegal drugs, and am not fond of the feeling or thoughts it produces in me. havent had that yet though as i said.

im thinking i might just go ahead and take half in the morning and the other half like 5-6 hours into the day. ill give it another 6 days tho as suggested and see if things dont level out for me.


Posted on Apr 15, 2009, 2:28 PM

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Re: modafinil / provigil ... questions..

by (Login patlittlejohn)
Moderators

did i mention that although the practitioners insisted to me that i take all of it, one time per day,

the manufacturers have made it in extended release already?

somehow information filters down really slowly from one to the other, and side effects are reported back (it seems) even slower.

for my money, and health, i take the say-so of USERS first.

as for the skin side effect, that was reported about the same time that i put my skin through h3ll here, way too much sun and long hours in the pool (120 degrees, living in a tiny camper).

i give it some credence, the effect on skin might be that after about 4 years of round the clock provigil, i could have made my skin more sensitive.

full report: the same blistered spots are still easy to set off by sun or pool water, somehow just the pool here (different brand of chemicals? cheaper chemicals?) so apparently the damage is done.

but i tend to it, and risk swimming a few times a week. at the worst i was a mess, looked like and felt like Job sitting in the ashes, scraping his skin with potshards.

Posted on Apr 16, 2009, 1:47 PM

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Naps

by (no login)

When I take a nap,my brain will not shut off.It is like always aware of what is going on around me,but I can feel my eyes rapidly moving back and forth.Is this sleep,and does anyone else have these kind of naps? Before Xyrem I would go completely out.

Posted on Apr 14, 2009, 10:45 AM

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Re: Naps

by (Login patlittlejohn)
Moderators

in connection with xyrem, i know nothing at all about it.

but part of N and C for me is not resting even during REM sleep.

Do you feel your eyes or does someone tell you about the REM? i wonder if it is waking dreams, aware and unable to rouse?

could xyrem do that to some people?

Posted on Apr 14, 2009, 1:19 PM

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Naps

by (no login)

I feel my eyes slamming back and forth at a hundred miles an hour.Could I just get stuck in stage 1 sleep? I feel I could answer someone, or get up if need be.I wish I could go out completely because these naps are never refreshing.Come to think about it,nothing is refreshing except Xyrem sleep.

Posted on Apr 14, 2009, 2:36 PM

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Re: Naps

by Lindsay (no login)

I do that and have no idea why.

Sorry I haven't responded to posts. Just moved, no net till tomorrow. Will catch up then ;-)

Posted on Apr 14, 2009, 1:40 PM

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Naps

by Bulldawg (no login)

I really glad someone mentioned that part, I've always felt like I was cheating or maybe not a real N just some messed up guy

Posted on Apr 14, 2009, 3:20 PM

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LOL

by (Login patlittlejohn)
Moderators

i knowwwww...


maybe i AM just nuts.

how about, maybe i am not paralyzed, just too lazy to get up.

and, gee this is embarrassing (fat old woman down on the ground, people think she is drunk)... maybe i just enjoy the attention!



i am just confuzzled and C is so bad.

making it worse,i am pi$$ed off cause all those richie rich Pastors at a meeting drove off merrily and left MINE 4 1/2 miles from home in 100 degrees.

he walked 2 hours and is in bed with (i'm guessing) heat exhaustion.

they all know the car blew up (he only goes where they send him, nothing is for fun anymore) and left him on the freeway with a smoking heap of car parts two weeks ago.

not one, ONE has ever called to see if we need anything or a ride, and now this. i hate crying when i am mad, this sucks



Posted on Apr 14, 2009, 5:09 PM

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re: naps

by (no login)

I don't experience that rapid eye movement during my naps, at least I never remember, but I do experience it during a cataplexy attack. My knees, arms and head go down, my eyes shut but I can feel my eyes moving back and forth and trying to open.

Posted on Apr 14, 2009, 8:52 PM

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