Jump to content


Photo

I Just Did My Mslt Today!


  • Please log in to reply
23 replies to this topic

#1 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 19 January 2009 - 09:02 PM

Howdy strangers! I haven't been online lately but I hope everyone's doing well.

Have any of you done a sleep study and then spent the time in between that and your doctors appointment trapped in a constant mindwhirl of "what will it show???" "what conclusion will be drawn??" "What did it mean when the tech said...??" blink.gif

So yeah. Fun times. But the sleep test itself wasn't that bad. I only had to have four naps. The tech said "You don't really need another REM cycle". But he waited until after the fourth to decide. He said I would likely get to go home early after the third. I find that I have sunk to the level of attempting to interpret facial expressions to shed light on the likelihood of an official diagnosis. And it's really difficult interpreting facial expressions when really sleepy.

I didn't think I fell asleep at all, but apparently I did each time. I think it may have been a sleep paralysis/hypnogogic hallucination thing though. While lying there, with my eyes closed in the dark I was typing on my computer only to think, "no. My computer is across the room in its case. I'm lying in bed trying to sleep. Where the hell did that come from?"

Anyway, I just thought I'd share my experience. Has anyone else (and I'm sure you're out there people tongue.gif ) felt the need to over-analyze everything before your doc went over your results with you?

#2 amazingracie28

amazingracie28

    Member

  • Members
  • 114 posts
  • Gender:Female
  • Location:South Carolina
  • Interests:Jewelry design, blogging about Narcolepsy, devising ways to make up for my Narc'd out memory and concentration.

Posted 20 January 2009 - 09:53 AM

QUOTE (eww @ Jan 19 2009, 09:02 PM) <{POST_SNAPBACK}>
Howdy strangers! I haven't been online lately but I hope everyone's doing well.

Have any of you done a sleep study and then spent the time in between that and your doctors appointment trapped in a constant mindwhirl of "what will it show???" "what conclusion will be drawn??" "What did it mean when the tech said...??" blink.gif

So yeah. Fun times. But the sleep test itself wasn't that bad. I only had to have four naps. The tech said "You don't really need another REM cycle". But he waited until after the fourth to decide. He said I would likely get to go home early after the third. I find that I have sunk to the level of attempting to interpret facial expressions to shed light on the likelihood of an official diagnosis. And it's really difficult interpreting facial expressions when really sleepy.

I didn't think I fell asleep at all, but apparently I did each time. I think it may have been a sleep paralysis/hypnogogic hallucination thing though. While lying there, with my eyes closed in the dark I was typing on my computer only to think, "no. My computer is across the room in its case. I'm lying in bed trying to sleep. Where the hell did that come from?"

Anyway, I just thought I'd share my experience. Has anyone else (and I'm sure you're out there people tongue.gif ) felt the need to over-analyze everything before your doc went over your results with you?



Omg. Yes. I went over not only every little thing the techs said, and overanalyzed how they said it. I was super lucky though, I work for the company who did my sleep study and was able to access my study interpretation like a week before my follow up with my doc, so I knew going into my appt that I was being diagnosed with N. It was such a huge relief just to find out I wasn't a nut bar and there really was an explanation for things. Then comes the adjusting to the diagnosis which has been a whole different animal. Good luck with everything!!

#3 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 21 January 2009 - 04:23 PM

I wish I had access to the study results before I saw the dr. It would give me time to really think about it and come up with the questions that I will want answered. I always blank when I get in there if I'm not well prepared (and even sometimes then lol). At this point I'm not even sure what good news would be...

#4 angellus

angellus

    Member

  • Members
  • 174 posts
  • Location:Atlanta, GA
  • Interests:Feeling well.

Posted 22 January 2009 - 01:23 PM

I got my results before i talked to the dr... depends on who your working with...

this was my 5th test so i can read them pretty well now.

ask for them, if they wont release them then make sure you take your time to look them over while you are there and dont leave without a copy. People here on the forum would be able to give you pretty solid responses.


QUOTE (eww @ Jan 21 2009, 04:23 PM) <{POST_SNAPBACK}>
I wish I had access to the study results before I saw the dr. It would give me time to really think about it and come up with the questions that I will want answered. I always blank when I get in there if I'm not well prepared (and even sometimes then lol). At this point I'm not even sure what good news would be...


#5 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 04 February 2009 - 08:56 PM

So I got my results back. It was interesting. And confusing.

For the overnight PSG (which was the best night of sleep I've had in months if not years) my results were fine. They noted I went into REM at 81.5 minutes which was an improvement over 61 minutes. I still popped in and out of REM a lot with 109 sleep stage shifts. But the PSG was declared normal except I fell asleep within 6 minutes.

For the daytime MSLT, I had a sleep onset of 5 minutes over the four naps. But I had no REM in any nap.

So I've been declared "sleepy". LOL. rolleyes.gif

My dr diagnosed me with "Narcolepsy, but not Narcolepsy. A variant called Hypersomnia." So... I've been officially diagnosed as "overly sleepy". Great. All of my paperwork says "Narcolepsy". When I attempted to ask questions about the difference between the two I was informed that my sleep specialist wasn't interested in preping me for medical school. He furthered that by saying I should just accept that this will never get better and if I try to "beat it" it will get worse so I should just deal with it. I got no literature, no referrals to a support group or anything of that nature. I was referred to the internet. He only asked me if my sleepiness was better or worse than last time.

I was incredibly impressed (note: I like sarcasm).

And now I'm incredibly stressed and tired and frustrated. I'm not geting enough sleep and am spending my days at the hospital with my grandmother. This appointment with Dr Sensitivity made me upset enough to have to sit in my car for half an hour until my knees worked well enough to drive home. Ugh.

I'm sure it will all look better tomorrow. wink.gif

#6 angellus

angellus

    Member

  • Members
  • 174 posts
  • Location:Atlanta, GA
  • Interests:Feeling well.

Posted 05 February 2009 - 11:04 AM

uhhh the dr said that to you or a nurse... i would have been like... umm this isnt an oil change.. its a medical condition..or do i need to prep you to deal with that fact?

wow..i wish i could refer everyone to fusion here in atlanta. honestly they are the most knowledgable and..compassinate... they understand the reprecussions of N and C and "hypersomnia"

in the ned though.. you do have to accept and deal with it... there is no cure.. just lifestyle modifoications and meds.. which the side effects are sometimes worse than the disorder.

Check in here to ask questions etc...

#7 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 06 February 2009 - 12:35 AM

Yeah that was the "sleep specialist" who said that. lol. And I do know that there is no cure and I will have to learn to manage it, however at the time I was (I think) understandably upset. I thought that the results would come back either a)low sleep latency+ REM= Narcolepsy or cool.gif No REM+normal sleep latency= Not narcolepsy. I was completely unprepared for option c.

Looking at my Hypnograms (the line graphs as I think they're called) of both my PSG and MSLT things are starting to shift in my mind so I'm understanding them better now. Overnight I just seem to pop in and out of REM like crazy and yet, during my naps there was nothing. I kept popping in and out of NREM1, NREM2 and wakefulness.

It's interesting to me to try to sort through it all.

#8 lespring

lespring

    Member

  • Members
  • 8 posts

Posted 09 February 2009 - 10:05 PM

Ha! I slept during every nap (and was asleep within 2 minutes each time) and then was dozing off in between naps. LOL

#9 chimbakka

chimbakka

    Member

  • Members
  • 253 posts
  • Location:ontario, canada

Posted 10 February 2009 - 09:27 AM

QUOTE (eww @ Jan 21 2009, 02:23 PM) <{POST_SNAPBACK}>
I wish I had access to the study results before I saw the dr. It would give me time to really think about it and come up with the questions that I will want answered. I always blank when I get in there if I'm not well prepared (and even sometimes then lol). At this point I'm not even sure what good news would be...


i was really lucky. i was really stressed and basically said to the tech "look i know you aren't supposed to say anything etc but if it ISNT N im running out of things to be checked for, and im pretty much nonfunctioning at this point, and i can't bloody take it. blah blah blah" and he was great just read "key points" for me. i told him I knew i didn't go into rem during the tests and that's why i was allupset b/c maybe it isn't N but it makes SO much sense blah blah blah. he read that the doctor wrote "no rem but is on celexa which suppresses rem sleep, sleep latency of 4.5.. this and that, indicative of narcolepsy"
so he didn't officially interpret or anything (which they can't do) but he just pointed otu some stuff for me. then he gave me provigil to take home (if they made you take stimulants home that
's a good sign they found something, they wouldn't let me DRIVe if i didn't take something someone would have to come get me cuz they would beliable for knowing something was wrong and watching me get in my car) and they booked me for an "urgent" followup vs we'll call u and book a followup in a million years.
so if you got drugs, and they are following up in the next week-three weeks they have soemthing
if not they probably do'nt.
hope that helps some!

#10 chimbakka

chimbakka

    Member

  • Members
  • 253 posts
  • Location:ontario, canada

Posted 10 February 2009 - 09:34 AM

if i had to guess... you went to the clinic in kitchener?
what drugs were you on when you took the test.
did they ask about any of the other sypmtoms of N: cataplexy, hallucinations, etc
PLEASE ask your dr to send you to hamilton. even for them to give a second opinion about your results.
i was there yesterday for a follow up and to change my meds because the modafinil makes my birth control not work which makes my gyno problem (not yet dx'd) really severe which puts me in severe pain constantnly which makes my modafinil not work... so anyway im on ritalin now. i cried in the dr office there and he's soooooo nice and comforting and makes this whole process so much more bearable.
also, take someone with you if you have to encounter this doctor again. heck I"LL even go with you if you would like. im bad with doctors.. now that i know a bit about the "system". i'll say things like "ok well this is great but considering im on an ssri and that suppresses rem, and i have X number of the remaining sypmtoms, and this and this and this, why EXACTLY is an N dx not appropriate"
ok i didn't have to do that with my dr
BUT i did tell my gp that my other obgyn can jump of a bridge and die please send me to dr so and so
(i do though also tell her every visit i love her and she's an amazing doctor and yes i've seen lots of crappy ones at work and had them as my doctor so i KONW she's great - so i don't just *BEEP* when it's due i praise as well LOL)

#11 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 10 February 2009 - 10:18 PM

lol. Chimbakka, you are so right. That was the sleep place in Kitchener. I already have a referral to the one in Hamilton (the one on Frid St right?) that I'm waiting to have an appointment with.

I'm not on any medication other than the Modafinil (which they put me on after the first test which was just a PSG). So no REM suppressant. And I didn't REM in any nap. During my REM sleep at night I often wake up and go right back into REM several times per episode, but I did not go into REM at all during the day. As for other symptoms, I have sleep paralysis/hynogogic hallucinations often. Very often. I never thought a thing about it. I've had a peeping tom since I was 16 who has travelled with me all over the country and even to Europe! He doesn't mind scaling 6 story buildings to watch me either. LOL What can I say, he's persistant.

I don't think I have cataplexy though. I mean I definitely do not have textbook cataplexy. I have experienced muscle weakness occassionally but it was less associated with emotion than exhaustion. When I am overtired my knees revolt and occassionally I land on the floor. You are also right that the Kitchener "Dr" didn't ask any questions about any other symptoms. Ugh.

And now I'm thinking about your gyno problems as I have some myself. I was dx'd with PCOS in 2006. The irony is that my chief complaint was... tiredness. Anyway, I hope you have found a good dr for that as well and things there get sorted out quickly.

#12 eightlegs

eightlegs

    Member

  • Members
  • 126 posts

Posted 11 February 2009 - 09:09 AM

QUOTE (eww @ Feb 10 2009, 10:18 PM) <{POST_SNAPBACK}>
I don't think I have cataplexy though. I mean I definitely do not have textbook cataplexy. I have experienced muscle weakness occassionally but it was less associated with emotion than exhaustion. When I am overtired my knees revolt and occassionally I land on the floor.


fyi.. it's not normal for that to happen... wink.gif that's cataplexy... and being so upset that your knees don't work enough to drive.. also not normal. My cataplexy seems to only affect my arms and neck.. but under those exact same circumstances.... and everything is worse when I'm overtired (well, more than usual)

I am completely aghast at the line they fed you about "prepping for med school".. what a prick!! You have every right to want to know everything you can about what is going on with you. Your sleep study sounds very similar to my first.. I was dubbed "sleepy". rolleyes.gif

I have to agree with Angellus.. we see the same dr., and they are AMAZING. My first appointment I wanted to hug the man.... it was like he answered my questions before I could even ask them! ..wasn't annoyed that I wanted answers, wasn't put off that I wanted to know as much as I could, and took the time to explain the technical aspects of it, because I wanted to hear them. Also didn't feed me any crap about "you might as well learn to live with this"... he wasn honest in the fact that they *might* not be able to make me feel 100% normal.. but was going to give it a heck of a try, including putting me in a research study if it comes to that.

My point is.... there are decent dr's out there... don't give up...

#13 chimbakka

chimbakka

    Member

  • Members
  • 253 posts
  • Location:ontario, canada

Posted 11 February 2009 - 02:56 PM

QUOTE (eww @ Feb 10 2009, 08:18 PM) <{POST_SNAPBACK}>
lol. Chimbakka, you are so right. That was the sleep place in Kitchener. I already have a referral to the one in Hamilton (the one on Frid St right?) that I'm waiting to have an appointment with.

I'm not on any medication other than the Modafinil (which they put me on after the first test which was just a PSG). So no REM suppressant. And I didn't REM in any nap. During my REM sleep at night I often wake up and go right back into REM several times per episode, but I did not go into REM at all during the day. As for other symptoms, I have sleep paralysis/hynogogic hallucinations often. Very often. I never thought a thing about it. I've had a peeping tom since I was 16 who has travelled with me all over the country and even to Europe! He doesn't mind scaling 6 story buildings to watch me either. LOL What can I say, he's persistant.

I don't think I have cataplexy though. I mean I definitely do not have textbook cataplexy. I have experienced muscle weakness occassionally but it was less associated with emotion than exhaustion. When I am overtired my knees revolt and occassionally I land on the floor. You are also right that the Kitchener "Dr" didn't ask any questions about any other symptoms. Ugh.

And now I'm thinking about your gyno problems as I have some myself. I was dx'd with PCOS in 2006. The irony is that my chief complaint was... tiredness. Anyway, I hope you have found a good dr for that as well and things there get sorted out quickly.


im so glad u will get to hamilton. let him konw if u are paying for drugs to, trillium covers ritalin and dexadrine. the cmh er referred me to a obgyn last summer who is an idiot, so i asked my gp to referr me to dr j green at cmh. i have to wait till may but he's good so it's worth it, at this point we are looking at pcos or endometriosis... a few drs have told met though they think it sounds more like endo... so we'll see
good luck!

#14 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 11 February 2009 - 04:17 PM

eightlegs- lol. yeah, I suppose that isn't exactly normal. I agree that everything is worse when I'm stressed and overtired. And yes, my current sleep specialist is a horrible horrible petty little man. I'm waiting to get into a better doctor.

chimbakka- CMH in Cambridge? My current Obgyn is in Hamilton and is very good but I've been through quite a few horrible ones before I found him. PCOS and Endo often go hand in hand. I am paying for drugs. Currently I'm trying to get my university insurance to cover it. They demanded I get an MSLT and send them the results in order to make an exception for the Modafinil. If this falls through then I will ask to be switched to something else. My pharmacist gave me an information package for trillium.

#15 chimbakka

chimbakka

    Member

  • Members
  • 253 posts
  • Location:ontario, canada

Posted 12 February 2009 - 02:54 PM

QUOTE (eww @ Feb 11 2009, 02:17 PM) <{POST_SNAPBACK}>
eightlegs- lol. yeah, I suppose that isn't exactly normal. I agree that everything is worse when I'm stressed and overtired. And yes, my current sleep specialist is a horrible horrible petty little man. I'm waiting to get into a better doctor.

chimbakka- CMH in Cambridge? My current Obgyn is in Hamilton and is very good but I've been through quite a few horrible ones before I found him. PCOS and Endo often go hand in hand. I am paying for drugs. Currently I'm trying to get my university insurance to cover it. They demanded I get an MSLT and send them the results in order to make an exception for the Modafinil. If this falls through then I will ask to be switched to something else. My pharmacist gave me an information package for trillium.


im glad you got the info for it. oh my it's so expensive! i finally gave up waiting to ge tit covered and am on ritalin. yeah the dr works in cambridge and does the surgeries etc at cambridge memorial. i could have a heart attack on grand rivers door step and they'd have to wait itll i went unconcious to get me in their er.... unfortunately st marys' er isn't much better lately

#16 dogwizards

dogwizards

    Member

  • Members
  • 6 posts
  • Location:Indiana

Posted 12 February 2009 - 04:35 PM

eww wrote: "When I attempted to ask questions about the difference between the two I was informed that my sleep specialist wasn't interested in preping me for medical school. (. . . ) I was incredibly impressed (note: I like sarcasm)."

Wow, your doctor sounds wonderful! (I like sarcasm, too.) However, I would argue that you were impressed, just not favorably. wink.gif A small distinction, to be sure, but one one that makes me smile when I'm replaying the scene in my head - you know, when you remember the perfect comeback, snide remark, or just plain mean thing that you'd love to say but probably never will. Whenever people act like idiots trying to prove how cool they are or are incredibly condescending, like your doc, I think, "well, you certainly made an impression, but I'm pretty sure it's not the one you intended."

And angellus, from yours: "wow..i wish i could refer everyone to fusion here in atlanta. honestly they are the most knowledgable and..compassinate... they understand the reprecussions of N and C and "hypersomnia""

Atlanta, huh? My brother lives in Commerce. Hopefully my doc here at home will help, but if he doesn't, maybe I should make a trip to visit my baby bro. Is there a particular person there who is really good? Do they have a website or more info somewhere?

#17 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 12 February 2009 - 09:53 PM

Chimbakka- Some of the ER's around here are plain old horrible. My Opa went to Brantford General and was told that the infection that made his leg swell to double the size and turn bright red was a bruise. They instructed the 83 year old with congestive heart failure to sit in a hot tub! Stupid. Even I know you don't put hot on a bruise anyway.

Dogwizard- You are right. I was impressed. Just not positively. And your dreams (from the other thread which I'm too tired to respond to) are wacky crazy. They remind me of my crazy bleeding lobster dream from when I was a teenager. No matter what kind of other dreams I have, that one will always remain the first one that freaked me out so terribly I was sure I was going crazy.

Oh and I have an update on the cataplexy situation! (This may be TMI and people squeamish about girly things should skip this paragraph). I had an IUD inserted today. And I totally flopped and lost all muscle control twice during the procedure! LOL. I warned them before hand that I may "pass out", not to worry I'd be back in a few minutes, and to please hold my legs so I didn't get permanent injury from floppy legs during the ordeal. LOL. I freaked both the nurse and the dr out. I then completed my circus act by repeating everything they said while I was "unconscious" and asking the nurse not to "gently" smack my face to wake me up. Afterwards the nurse didn't want to leave me alone incase I fell. Sigh.

#18 eightlegs

eightlegs

    Member

  • Members
  • 126 posts

Posted 13 February 2009 - 09:14 AM

eww--- YIKES! ... and the whole part about holding your legs sounds kinda like the same problem I have during sex.. *blushing* doing a split unintentionally can be painful..lol... and your username.. everytime I read it all I can think of is that Jim Henson movie "the Christmas Toy".. with the little catnip mouse named EWWW...(because he smelled funny).. laugh.gif

QUOTE (dogwizards @ Feb 12 2009, 04:35 PM) <{POST_SNAPBACK}>
And angellus, from yours: "wow..i wish i could refer everyone to fusion here in atlanta. honestly they are the most knowledgable and..compassinate... they understand the reprecussions of N and C and "hypersomnia""

Atlanta, huh? My brother lives in Commerce. Hopefully my doc here at home will help, but if he doesn't, maybe I should make a trip to visit my baby bro. Is there a particular person there who is really good? Do they have a website or more info somewhere?


it's fusionsleep.com They operate a little differently in that they have one head dr. that oversees everything, and a staff of dr's that rotate to see patients.. I had to laugh when at my first appt. I stepped out to change my son's diaper, and when I came back the dr. I was seeing had brought in the head dr. for backup.. laugh.gif They really do seem to know their stuff.... and I didn't feel like i was having to justify myself or my symptoms in there, or "play dumb".. I'm a very involved, and sometimes difficult patient.. and they didn't seem put off by it in the least...

#19 jenji

jenji

    Member

  • Members
  • 187 posts
  • Gender:Female
  • Location:new york
  • Interests:the arts

Posted 13 February 2009 - 12:52 PM

EWW:

"I then completed my circus act by repeating everything they said while I was "unconscious" and asking the nurse not to "gently" smack my face to wake me up."

...that, is classic.

thanks for the laugh.

jenji

#20 chimbakka

chimbakka

    Member

  • Members
  • 253 posts
  • Location:ontario, canada

Posted 18 February 2009 - 08:06 AM

QUOTE (jenji @ Feb 13 2009, 10:52 AM) <{POST_SNAPBACK}>
EWW:

"I then completed my circus act by repeating everything they said while I was "unconscious" and asking the nurse not to "gently" smack my face to wake me up."

...that, is classic.

thanks for the laugh.

jenji


LOL that's great. You are definately N w/C can't wait to see what hamilton says!