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sleepless in AZ
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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.
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?
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
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 ).
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.
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.
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.
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)
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.
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
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.
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.).
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.
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
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
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.
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.
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,
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?
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.
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.
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.
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
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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
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.
A good ole country boy answered an ad for a toothbrush salesman. The manager to one look at him, gave him 100 toothbrushes to sale, and sent him on his way. 3 hours later the country boy was back for more toothbrushes. Thinking the country boy had lost them, the manager gave 100 more. Next day the country boy showed up and got 500 toothbrushes. Third day he got 1000 toothbrushes. The manager didn't know what to think so he asked the ole country boy "what is going on?". The country boy replied "I sure do hope these last me till lunch time". The manager wanted to know the secret to his sales success. "Well its real simple. I got me a table set up a the mall with a bowl of potatoe chips and some dip. When people walk by I ask em if they want to try some chip and dip. As soon as they take a bite into the dip they say "OOOh that taste like crap" It is, want to buy a toothbrush?
I was diagnosed with narcolepsy last August. A few months prior to that I was diagnsoed with Type 2 diabetes (familial). I've spend four years trying to get help with my sleep and up until last August all that was discovered was obstructive sleep apnea. After a number of doctors I found one who studied sleep patholgies at Stanford especially narcolepsy. I could literally fall asleep while walking and wake up not knowing where I was and often walking into doors and walls. I was experiencing full-on dreams that could occur with a bob of my head tying to stay awake. I'd had enough after splitting my forehead open on a door jam and slamming hard into a mirrored door.
After a couple more sleep studies my sleep latency was measured at .4 minutes.
I began taking Xyrem last Sept. After the first night I awoke and experienced an extreme awakening of my senses. Everything was brighter, my sense of smell was greatly intensified and was my sense of taste. My sleep was better but still wanting. That was on the first dose level. Titrating up made my narcoleptic fits become almost eliminated. I had side effects like nausea, blurred morning vision. Over the last few months I have lost over 15 lbs-a lot for me as I had been 150lb. I could lose 5lb in a few days. I couldn't keep weight on. I was feeling weakened. My doctors blamed it on the Xyrem, even though my sleep doctor didn't think it the culprit. I've had to come off it and now my sleep is a mess. I don't sleep well at night and during the day I can't keep awake at times even with provigil. I'm a 50 yr old male and have had to take time off from work in order to build myself back up. My diabetes is well-controlled and while I have other health problems they are well-controlled.
Does anyone have experience with Xyrem that could account for weight loss? Stopping the treatment hasn't helped my mood either. I was having such good results with the Xyrem dose of 3.75, 2X a night. Now I sleep for 9 hours and wake up exhauseted.
Any feedback will be greatly appreciated.
Usually weight loss is a good thing, for you it was not. I know that I lost 35 lbs when I was on it and gained it right back and more when I had to get off of the Xyrem. (Our insurance was no longer active and I can't afford it.)
However, if I were you & I was losing too much weight, I would have stuffed myself, taken Ensure, whatever...in order to stay on the Xyrem. Because it is basically a cure for narcolepsy, the way I see it.
When you gain your wight back, I believe I would try it again, since it worked well for you too.
Welcome to the sleepy gang!! Did you first notice your N symptoms when you were in your teens or twenties? It's funny how so many of us have lived our lives (30 plus) years before we were dx. I am sixty and was dx when I was fifty. I am impressed by some of the testimonials of those who are taking xyrem, but on the other hand scared to death to try it. I also have sleep apnea and on a cpap, I was told it is not recommended if you have OSA even on a cpap. I finally have an appointment with a sleep doctor at the Mayo clinic in AZ and this will be one of my questions for them. I am a very drug sensitive person, most doses of drugs I have to start out at a pediatric dose. Do you have cataplexy? If so, does the xyrem help that too?
I would encourage you to ask your doc about checking your thyroid levels, xyrem had a direct effect on my levels because I became more active I required more thyroid medication.
In your case I would suspect you quite possibly have gone into hypERthyroidism. Do you have any heart palps or excessive sweating other than the weight loss?
i will do the whole welcome, contact us thing in a minute. but first this has been weighing on me, man the cataplexy is kicking my butt these last `10 days ---
what you describe is a giant change in expectation of relief. you simply cannot just rule out xyrem considering the extreme state of upheaval and constant injury you go through without it.
also xyrem is one of the very unique meds that can do the whole narcolepsy/cataplexy package, and there is nothing that is enough like it to experiment around. with the improvement in sleep, some of the daytime hallucinations and automatic behavior must have been improved dramatically by what i call "mechanical" means: taking extreme exhaustion out of the picture, so much of the day and night N and C effects were lessened, and surely not getting worse.
before you completely abandon xyrem as an option, it occurs to me to control the "nausea" side effect separately. tell the docs if they dont have a chemical answer to it, that you will try something independently, then get your hands on some pot. if you can deal with appetite and nausea (attraction AND aversion) in the same step, you might see your weight and strength come up.
you have so much at stake, please get back to us on this.
in case you have not seen it here since september, i will post the Definition Page, and PLEASE email me anytime.
pat
btw. i believe you are getting the best care in the world if you are still at or near Stanford. there MUST be some way to work with this.
"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.
Hi guys! How is everyone doing? I have lost my computer for a few months (AGAIN) and just got it back not too long ago. But I have a question. Someone in school told me that their brother got N from a mosquito bite. A nurse who worked in the nuro unit with my nurologist agreed that it could be true. I only know of one way to have N and thats being bor with it. Has anyone else ever heard of this? If so Are there any web site that you know of that could explain thihs in a little better detail? Because this was just something that blew my mind.
LONDON (Reuters) - Two studies published on Thursday provide evidence that common viruses may cause childhood diabetes, paving the way for potential vaccines against the life-threatening condition, researchers said.
One team showed that enteroviruses -- which normally cause colds, vomiting or diarrhea -- were found frequently in the pancreases of young people who had recently died from type 1 diabetes, sometimes called juvenile diabetes, but not in healthy samples.
This suggests a virus could trigger the disease in children genetically predisposed to the condition, which affects an estimated 440,000 people worldwide, said Alan Foulis of the Royal Infirmary in Glasgow, who worked on one of the studies.
"The story that is emerging is there is a virus infection that precedes the onset of autoimmunity," he told a news conference. "There is a thought that we are looking at the culprit."
Type 1 diabetes is caused by the destruction of beta cells of the pancreas that produce the insulin necessary to regulate blood sugar levels. The autoimmune disease is different from the far more common type 2 diabetes, which is strongly associated with obesity.
Genetics play a role in diabetes but researchers know other factors such as diet are also important, with viruses long suspected as a possible trigger, researchers said.
Foulis and colleagues examined 73 pancreas samples of young people who had died from diabetes and found that 60 percent of the donated organs contained evidence of enteroviral infection of beta cells.
By contrast, the researchers hardly ever saw infected beta cells in tissue samples taken from 50 children without diabetes, they reported in the journal Diabetologia.
They also found a large proportion of these infected cells in adults with the more common type 2 diabetes, suggesting that viruses may also trigger this form of the disease in some people.
A second study from Cambridge University researchers found that rare genetic mutations in a gene involved with the body's response to viruses reduce the risk of juvenile diabetes.
They looked at 480 young people with type 1 diabetes and another 480 healthy people to identify the gene and the variants involved.
"We have pinpointed a specific gene, which acts as a warning report for virus infection," John Todd, a Cambridge University researcher, who worked on a study published in the journal Science. "Not only have we found a specific gene but this gene also has an intriguing function in dealing with virus infection."
While Todd cautioned that many environmental factors besides viruses could contribute to type 1 diabetes, Foulis and his team said they wanted to whittle down the some 100 enteroviruses to find which ones played the main roles.
Doing this, and better understanding of how cells respond to viral infection, are steps toward a vaccine that could one day protect children against diabetes, Foulis said.
"The aim would be for a vaccine that would prevent many cases of type 1 diabetes," he added.
if the following is also true of the virus that may cause diabetes then it would explain the 45th parallel thing
Cold Temperatures Pave the Way for Influenza Virus to Spread
By Miranda Hitti
WebMD Health NewsReviewed by Louise Chang, MDMarch 3, 2008 -- Scientists may have found a chink in the armor of the flu virus. Their discovery may lead to new flu treatments.
Researchers today reported that in winter, even the flu virus wears a coat, and it's a coat that helps the virus spread through the air. Tinkering with that coat might disarm the flu virus.
"Now that we understand how the flu virus protects itself so that it can spread form person to person, we can work on ways to interfere with that protective mechanism," Duane Alexander, MD, director of the National Institute on Child Health and Human Development, says in a news release.
Here's a quick look at the new findings on the influenza virus.
Scientists found that in cold temperatures, the flu virus forms a hard coating that acts like an envelope, helping the virus spread through cold air and then melting inside people to do its dirty work.
"Like an M&M in your mouth, the protective covering melts when it enters the respiratory tract," Joshua Zimmerberg, PhD, chief of the cellular and molecular biophysics lab at the National Institute of Child Health and Human Development (NICHD) says in a news release. "It's only in this liquid phase that the virus is capable of entering a cell to infect it."
In warmer temperatures, that coating doesn't form. So it's harder for the influenza virus to spread through warm air.
Zimmerberg and colleagues report their findings in today's advance online edition of Nature Chemical Biology.
My doctor said that could be one of the causes, but they don't know. Also, having lyme disease can also be one of the causes. You can get lyme disease from a tick bite. I was bit by a tick when I was 11. My narcolepsy symtoms began about 5 years later.
I'm afraid we could go on guessing all day and even the experts (so to speak) can't figure it out. I think we have the predisposition for the disorder, but each of us is unique and there are probably dozens of triggers that cause narcolepsy to develope. As one bio chemist in the UK stated in a documentary last year that it was apparent that one 14 year old girl, developed N and C hours after receiving an immunization shot. Who knows?!!!
I don't believe in those few docs that are on the kick about immunization shots causing this and that, because a couple years ago they proved that to be wrong. That's why no one is talking about it anymore in the media.
I would much rather my kid be alive anyway, then dying from a disease because I didn't get them their shots.
I'm not advocating against immunizations, I think they are necessary. I am against the amount of immunizations given in such a short period of time and at a few minutes after birth. They need to be spread out over time. It is not disproven that immunizations can trigger N, quite the contrary. Many immunizations are live virus given in a dose that trigger our immune systems to produce anti-bodies. Theory being that a virus could very well be the trigger.
a) being born with a predisposition (which could mean an acquired immunity issue, a genetic tendency to one of the other known and unknown changes to the brain)
b) being born with some deformity that exhibits a loss or lessening of hypocretins
c) traumatic injury to the brain (physical blow, high fever, who knows?)
d) toxic or chemical event (environmental contaminants, surgical anaesthesia, drug reaction or overdose)
e) some completely unsubstantiated suspicions about survived extraordinary stressors.
since an immune or toxic reaction might be started via illness, one could guess at mosquito bites, even physical interaction with a parasite,
but that would be pretty wild conjecture, considering the very limited fund of data and understanding right now.
they still investigate such inane questions as "gee, why are you sleepy". it doesnt surprise me that there are idiotic assumptions about getting this from mosquitoes -- or from swinging a dead rat 3 times...
I tryed Provigil a couple of years ago, and it had no affect. My doc wanted me to give it another try, I took one and 2 Hours later had a severe asthma attack. We thought diddent think much of it until the next day I took my provigil dose and WHAM another severe asthma attack, this time almost had to go to the hospital, we had 911 on the phone. So I quess what I am saying is that if you suffer from Asthma, be careful with the Provigil.
that kind of reaction would spell trouble, no sense in experimenting with it, or wondering if it is allergy or some other biochemical sensitivity.
if anyone is trying new meds, and never had any problem with asthma, they may not know what a dry barking cough means. it can be the beginning of breathing difficulty, asthmatic episodes that get worse or become critical.
then be sure you check every time you get scrips, for instance i had that problem with an ACE inhibitor for blood pressure... having it in your records is not enough to keep some of the wrong prescriptions or substitutions from getting to you.
I tried to ride a bike the other day and fell on my you know what when I got back to the driveway.
I would have been fine, but the bike was a little big so I got anxious at the end when I needed to get off, then the C hit me in the knees and I went down.
Probably looked like an idiot too in the first place, but I need to do some kind of exercise because eating right isn't helping at all.
I love to ride my bike, one form of excercise that is actually enjoyable. But like you I have had a few spills, none to serious. But as age creeps in, it is harder to pick yourself up and brush it off. My doctors are always preaching exercise, exercise, but they just don't understand this aspect of being physical can cause us much harm.
If you are into bikes you might try a three wheeler, for safety.
I saw a three wheeler in Creswell this week. It was built by a biker, for a biker. Looked more like a custom chopper, with long handlebars. The part I liked was that it was electric. He was zipping down the road at 25mph. Way to go
Many of the older people ( older than 60 ) in our RV park have three wheelers. We looked at one last year that our neighbor had for sale, but they aren't that cheap. I may have to bite the bullet and trade mine in.
this just wipes me out, and i am so useless. i am barely sitting upright, trying to help my daughter's little family. she is gone (my oldest with Aspies) and her babies are alone with their young father. both children are showing the rash that comes between strep (which he didnt know they had) and rheumatic fever.
he just passed 5 kidney stones, and now this, and it is making me remember all those years of one thing after another that my own 'lion' nature would kick in, against poverty and no car, and docs who didnt care... and everything that threatened my little ones...
how constant it was, and how hard.
and it all got worse and more constant and more hopeless the 2 years before i crashed and burned with N symptoms. i feel like i failed, the whole thing won against me,
i am going bonkers. i would rob a bank or something if i could keep my grandbabies and soninlaw from being hurt and in danger. and i CANT make an excuse to him when he is stuck out there in the woods with the babies and asks me what will help, what does something mean, what should he do? cant tell him it is too much for me, i have to go lie down.
that just freaking blows, i hate myself, and fight to sit up; keep trying to answer questions and ask questions, and be right and clear enough for him to understand, and still not miss anything. find out from him if the docs were just brushing something off, and why didnt he get to emergency in the middle of the night, and why the kids antibiotics were not started sooner.
then how in the world he can get a car, and how long will unemployment last, and if they are cold in that house (for mercys sake!) and if the weather is still making it all so hard
it might help him MORE if i could talk on the phone, but i CANT hear the babies in his arms, or have him ask me "why did she leave, Mom? what can i do?" , that would be TOO EMOTIONAL, NOPE, CANT GO THERE,
and then the kidney stones and the rheumatic fever will never be talked about at all because i will just collapse and be totally hatefully useless.
We have read your encouragement to others and you have offered prayers and faith. Maybe together, we can add our thoughts, prayers, and faith, that things will work out in a positive way.
We will endure,
i put this out in our safe group, i think, because no one else would understand how we fail to be there for our families. it just drives me to the brink.
I have been on SSDI for two and a half years for Narcolepsy and Sleep Apnea,I was wondering if any of you went through a period of feeling worthless and embarassed of what your life has become.If so how do you cope or get through these feelings.
Definitely been through periods of that... I was denied SSDI twice now, too... which made times even worse for us. Definitely have had some stinky days.
so, they were paying for the obstructive and incompetent approval/appeal process, in many back years of benefits, years and years PER disabled applicant.
typically instead of changing that, they just changed the law, caps back pay at 2 years. and that is 2 years of hardship, watching your whole life swirl down the toilet
forgive me Masrek, missed your question.
actually the time you have been covered and blessed by ssdi is wonderful, i could not be happier for you.
i reminded myself and a few other people of my many years of unending effort, and some success, until now i totally lost that memory.
lots of self image is tied up in just answering "so, what do you do?"
you will get some good answers to that, useful in all sorts of occasions:
my personal favorite answer right now, "i live in a rubber room"
This message has been edited by patlittlejohn on Apr 10, 2009 7:43 AM
I work full time and feel the same way. I used to do this, I used to do that, N is invisible to those who don't understand it, because we look normal to them. If they could spend one mere day in our shoes!