eww

I Just Did My Mslt Today!

19 posts in this topic

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:

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 :P ) felt the need to over-analyze everything before your doc went over your results with you?

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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:

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 :P ) 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!!

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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...

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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.

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...

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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:

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. ;)

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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...

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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 B) 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.

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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.

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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... ;) 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:

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...

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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.

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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. ;) 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?

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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.

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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).. :lol:

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.. :lol: 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...

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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

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

Ha! I slept everytime also...first time within 2 minutes, the next 3 within 30 seconds. and REM every one.

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I had my tests on Friday and I am terrified of what the result will be. Why must I wait so long? I don't know what my latency was and I did not fall asleep for nap 5, I think because my mind was racing. I am so scared they are going to tell me to stop being lazy.

Nap #3 was very interesting. I was on tech #3 for that test as well and he was a bit more informative than the previous 2. When he came in after waking me up he mentioned he saw the REM on that one. I had a dream that I had left the sleep center with all the wires still attached and was driving home. It was so real and I was so conscious of it that I got scared, finally realized it was a dream, and had to wake myself up. My heart was pounding. I'm curious what my vitals were for that little episode.

I think they caught me on a good day. I wonder if I can demand another sleep study if these results are inconclusive.

I don't know yet if I have C. I just came off of Effexor and I have been trying to be more aware of my behavior during extreme emotional situations, but it turns out I don't ever have any. I think it's partially from the Effexor and partially from over the years training myself not to have extreme responses to anything because in the past it's been too extreme (mostly anger - very ugly). I do remember being very exhausted and having to sit and rest or even sleep for a few hours when I was younger and would have my bad tantrums.

My newest thing has been Restless Legs which I am not sure is related to the N at all. At least, I think it's restless legs. I get a sensation that hot needles are being driven deep into my legs. It's not all over, just one spot at a time and sometime I feel it in my butt or lower back and not just my legs. It's most often in my calves. I'm curious if it showed up on the PSG or MSLT. The only relieve is to actually move my legs. Rubbing, slapping, or scratching don't work.

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Hey Stacy,

Don't worry too much about it. Just because they didn't see REM as it was going means nothing. REM is actually kindof hard to identify the first time through anyways, and you only have to REM in 2 or 3 naps anyways to get the N diagnosis. You don't have to REM long, one epoch will do (1 epoch=30 seconds).

As for the C, I can totally identify with the suppression of emotion leading to fewer, if any triggers. Not that the triggers are not there, but they are harder to set off almost. I hope you don't have C, but if you do the only way to really diagnose it is through surveys and feedback, there is no "test" for it like a PSG.

I have to go real quick, I'll add to this later!

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I was told that I slept on my first few naps and that dreams registered, but I thought that I was awake. When I know for sure that I dreamed, they said that I didn't hit REM. Odd. I told them that I was dreaming, otherwise, what would explain the family that I didn't know coming into the lab room to brush their teeth? I had problems brushing mine and had to use their toothpaste.

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