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False Positive Mslt?!

Mslt narcolepsy psg OSA false positive

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#1 kelsey89

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Posted 02 September 2013 - 11:40 AM

I am so confused I have my results from PSG and MSLT. But nothing makes sense. Do I really have narcolepsy? I need to know what all this means!

I'm 23
160 lbs
5'4"
Female

PSG
AI 0.6
HI 9.9
AHI 10,5
REM AHI 20.7
Supine AHI 11.8
Desaturation index 11.6
Minimum oxygen saturation 88%

MSLT
5 naps
Average sleep latency 0.7 minutes
5 onset REM periods occurred
Previous night had 595 minutes of total sleep time


To my knowledge I have never experienced cataplexy but then again I had been taking adderrall for the past 3 years. Could the MSLT be a false positive?

I had weened off then completely stopped taking Paxil a month before my tests. I stopped taking adderrall XR 40 mg 48 hours before as directed by my doctor.

I have been fitted for a CPAP and am waiting to receive it. I no longer take adderall and have been switched to Nuvigil 150mg last month but now up to 250mg as of a week ago. I have anxiety and used to be on Paxil 20mg but stopped taking it about 3 months ago and now just take Xanax as needed 0.5-1mg. Xanax is not something I want to be on but my doctor wants to see how the sleep thing goes before I consider going back on an SSRI as my only symptom of depression is fatigue.

I'm just confused and want answers. This summer has been a horrendous emotional and mental roller coaster! My parents think its all just in my head. I don't know what to think anymore! I don't want to take medication for the rest of my life!

#2 squirrel!

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Posted 02 September 2013 - 02:16 PM

your tests seem pretty conclusive. Do you have other narcolepsy symptoms?
How is the nuvigil working?

Hope you start to feel better! I understand the roller coaster thing!

#3 ironhands

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Posted 02 September 2013 - 03:20 PM

The 10-20 AHI is definitely a sign of sleep apnea.  1-15 is considered mild apnea, so a CPAP will likely help.  If nobody explained it to you, it means that you stopped breathing an average of 10.5 times per hour that night, and during rem sleep, it jumped to 20 times per hour.  

 

Supine AHI means laying on your back, so 11.5 times an hour in that position.

 

the saturation is the amount of oxygen in your blood.  92-95% is normal, anything less and your brain isn't getting enough and it'll screw with you the next day.

 

sleep onset REM means you start dreaming as soon as you start sleeping.  most people take 60-120 mins.  if it's under 5 mins, it means you're sleep deprived and/or narcoleptic.  There are a few other causes, caffeine rebound, schizophrenia....  Likely those aren't the case here.  Did you have a hard time getting to sleep while on the pills?  Wellbutrin had too much of a stimulant effect on me, and I couldn't sleep until I'd eventually pass out from exhaustion.  

 

As far as whether or not you have narcolepsy, or whether or not you'll need drugs for the rest of your life - you might not.  A sleep onset REM can often be the result of sleep deprivation - which may simply be because of the apnea events you're experiencing.

 

Sounds a lot like my case.  Paxil made me all kinds of loopy, the emotions were all outta whack, and my sleep was really really disturbed.  

 

As for your parents, it's NOT all in your head, and you can prove it.  Your tests show 2 things that they cannot dispute or claim it's all in your head:

 

10-20 times per hour you STOP BREATHING.

You begin dreaming immediately upon falling asleep, where most people take 90 minutes.

 

Well, I guess technically, it is all in your head since it's neurology :P  If they suggest you're "faking" or some crap, throw those tests in their face.  "Mom, I STOP BREATHING EVERY 5 MINUTES WHILE I SLEEP!!!"  That should set things right.

 

I don't mean to get your hopes up, but you *may* notice a huge improvement once the CPAP is going.  You *may* be able to manage without drugs.  The multiple SOREMs and low sleep latency are a bad sign though, but the CPAP might put you one step closer.  



#4 kelsey89

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Posted 02 September 2013 - 03:54 PM

Squirrel - that's what I thought. As for other narcolepsy symptoms I'm not sure I'm just tired all the time. I don't think I have cataplexy. I do have anxiety though which when it gets bad enough always makes me tired. The Nuvigil is working and I think the higher dose is definitely needed though I feel slightly nauseated all day not entirely unlike how I felt on adderrall. My problem is that I don't eat all day because I have no appetite and feel sick then when it (nuvigil/adderrall) wears off I have a tendency to slightly binge eat at the worst time of the day (before bedtime). What have you tried that worked?

#5 kelsey89

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Posted 02 September 2013 - 04:14 PM

Ironhands I really appreciate you taking the time to explain all that to me. The doctors have to some extent explained all that to mebut its different and more understandable in writing. Here's the thing I could always sleep on adderrall because I could focus my thoughts and fall asleep any time I wanted too. Nuvigil on the other hand is different from one day to the next. It's weird during the day I feel so sleepy and unfocused but the ability to stay awake it awesome. Also I feel less anxious with nuvigil and more like myself. Maybe I'm still adjusting to life without the hyped up, super focus adderrall provided.

BTW Paxil was awful to come off of and looking back I now feel more like myself than I have in years. I feel more emotional but I think Paxil made me numb before.

So two questions for you if you don't mind.

I had more apneas during rem (twice the amount), is that normal for people with sleep apnea? Could that explain my sleep deprivation and SOREMs because I wasn't getting much of any REM sleep the night before?

Second. You mentioned "there are a few other causes...caffeine rebound, schizophrenia, etc." - Since I had only stopped taking my adderrall 48 hours before. (Okay actually to completely accurate 24 hours; I took 10mg regular not XR the afternoon before my test because I could barley function at work my head was spinning and all I wanted to do was go home and sleep). Anyways could another cause of my low sleep latency and SOREMs be due to amphetamine withdrawal?

Thanks-Kelsey

#6 Hank

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Posted 02 September 2013 - 04:43 PM

No-stopping Adderall for 24 hours would not cause SOREM and a short sleep latency. It just does not work that way. Adderall wears off at the end of each day so you are accustomed to that. At a prescribed dose, it does not cause a withdrawal syndrome. I don't know enough about sleep apnea because I do not have it. I do experience some central sleep apnea (not obstructive) and that does not account for my SOREMs and sleep latency of 3 min.



#7 ironhands

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Posted 02 September 2013 - 06:17 PM

No problem, that's what we're here for!

 

It is very common to have more apnea events during REM sleep, for a variety of reasons.  For some, their dreaming may influence their breathing, in others, they are more relaxed, but it's nothing to be concerned with, UNLESS, your REM percentage is very high.  Did they give you a breakdown of how long you spent in REM?  If it was a very long time, it would certainly amount to more apnea events over the sleeping period.  Getting too much, or too little REM sleep can certainly cause all kinds of issues the next day.  Too much may mean you didn't get much deep rebuilding sleep and feel weak, and too little means you'll likely be unable to focus the next day.

 

For the withdrawal, probably not.  If it were to interfere, it would be leftover sleep deprivation from previous nights.  If the stimulants you were taking weren't allowing you to sleep properly, as caffeine does for some, it could lead to an increase in your overall sleepiness.  In my case on the Wellbutrin, and many other stimulants, they keep me up for days until I crash, and when I do, it's a very long/deep sleep.

 

As Hank said, a withdrawal from Adderall wouldn't cause a SOREM.  This is true, BUT, if it was keeping you awake for days/weeks prior - like, only giving you 4-6 hours of sleep per night, you'd be sleep deprived and as a result, and probably see some SOREMS and a low latency.

 

I'd get your CPAP settled first, the relief from the apneas can often give you relief in a matter of days.  Like I said, it may not be N.  Have you experienced any cataplexy?  That is to say, when a strong emotion is triggered, do you feel weak and fall down?  How about hallucinations as you sleep or wake, and any sleep paralysis?  These are other symptoms, but not everyone gets them.

 

I was only sent to my PSG because they thought it was apnea.  My snoring is insanely loud, and I am always tired.  I had ZERO apnea events that night, which is almost unheard of, especially when there's snoring involved.  I had to go back for a second opinion because the specialist didn't read my summary properly where it said there were SOREMs on my PSG.  I haven't done an MSLT yet, but my hypnogram looks "far from normal" according to the second specialist.

 

I gotta get me some Adderall, sounds like fun :P



#8 IdiopathicHypersomniac

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Posted 02 September 2013 - 07:35 PM

No -- it's not in your head, and you're not depressed.  With your results, a false positive is highly unlikely, because you had REM in all five.  If it was two in five, it could be a false positive, but not five in five.  Your results show that you have sleep apnea *AND* narcolepsy.  Apnea is always worse during REM sleep.

 

The amphetamines and vigils will kill your appetite, so you must force yourself to eat, even when you're not hungry.  Trust me, I know what you're going through.  Once you are on CPAP they will repeat both tests.  Good luck and hang in there.



#9 kelsey89

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Posted 02 September 2013 - 08:23 PM

Here's how I always saw it. Adderrall along with all other drugs for ADHD, if you actually have ADHD works the opposite for us at the right dosage. Does it keep you up, yes, if that's what you want to focus on doing. If the dosage is too high and/or mixed with caffeine then sleeping was while not necessarily impossible is not likely or favored. I was always too anxious at that point.

Now up until a month ago that is exactly what I thought. Now with this new diagnosis...I'm not entirely sure.

I do know I am not the only one, in comparing notes with my friends, that we (I guess not anymore for me) have to take our adderrall/vyvanse/concerta etc. everyday and for nearly all of our waking hours. If we don't take it upon waking we will sleep all day. Basically it's like a hangover from hell. Head starts spinning because the floodgates open and thoughts are difficult to filter. Can't think, can't function, and just want to sleep. When you can move its to use the bathroom and/or eat anything and everything in sight. Welcome back appetite! Anyways here's the difference taking it upon waking and then if it wears off before going to sleep the same thing doesnt necessarily happen. Sometimes I would get tired and other times I would get hyper and super talkative and just wanted to go out and party. It really was for me just a toss up as for how I would feel when it wore off. I think it really depended on what else was going on and how much sleep I was getting before. I think of it like this...people in the morning who say "don't talk to me until I've had my coffee." Sub adderrall for coffee and that's me and many others I have talked to. Does the caffeine from the coffee stay in your system all day? No but it gives you the kickstart you need. Adderrall was that for me. I'm not trying to compare caffeine with adderrall by saying that they are the same but it's the only way I've learned how to explain it.

I didn't get much sleep the night before my sleep study because I wanted to be able to sleep. Not that that's ever a problem but still.

I did not receive a report on how much REM I got, but that is definitely on my list of question I want to ask my neurologist during my next appt.

As for cataplexy not that I know off. I mean I've always associated my anxiety with an extreme need to go to sleep. The worse it is the less I want to stay awake all I can think is I need to sleep I need to sleep. Is that possible cataplexy or just anxiety?

As for sleep paralysis I'm not sure. In my lifetime I know I've experienced something like that but no more than a dozen times and definitely not recently.

As for hallucinations. At times yes. I didn't know that what they were. I thought it was normal like when you are between being awake and falling asleep. I rarely experience them, however I know I did during my mslt test I did; all five times I think. They said I fell asleep under a minute every time and went into REM almost right away. But yet I remember thinking they finally let me sleep and I can't fall asleep? What nap is only 20 minutes? That's not a a nap. (I just graduated college...naps are sacred, daily routine, and at least an hour haha) During this thought process I was feeling disoriented and dislusional maybe. I remember hearing the music from the pool outside thinking well that's not cool. Will that affect the results? Two points to make here.

1) I cannot fall asleep at night unless its totally dark and totally quiet. And I cannot recall ever falling asleep at an inappropriate time. (Eg. During a movie, driving, reading, in public, etc.)

2) Were those hullcinations? I thought I was awake for at least 3-5 minutes thinking this but apparently not or my sense of time was really warped because I was so out of it and forced to stay awake and bored without any chemical assistance haha.

I know I said 2 but here's 3) Am I crazy?! Haha

#10 kelsey89

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Posted 02 September 2013 - 08:51 PM

Thanks Hank. Thanks IH-Is it just me or does it go beyond killing your appetite? Like the thought of food makes me sick, especially with the Nuvigil I'm completely repulsed. Not that I have ever really gotten sick when I force myself to eat but I just feel straight up nauseous even though I know I'm hungry and should eat.


Has anyone been diagnosed and treated for ADHD and/or anxiety/depression before being toasted, diagnosed, and treated for apnea and/or narcolepsy?

Just curious because I know stimulants are used as treatment for narcolepsy so I assume that's why many to most have been prescribed them, maybe? Also I know I was never a good sleeper. Always a night owl who could survive on little sleep and with nothing but a little caffeine here and there. Then 3-4 years ago I'm at the end of my freshman year of college and I'm scared to go back because I am always too tired and unfocused to finish my homework at night and could barely stay awake during my classes. A year later I unknowingly dealt with mono, guess I was just used to being tired and adderrall definitely was doing some if not all of the work. Since then I have become increasingly more tired and anxious, introduce Paxil, now out of the picture. But for the past two years I cannot function without adderrall and now nuvigil, not go one day without almost loosing it if I'm not allowed to sleep all day. Is this just the progression of my narcolepsy and/or apneas?

#11 ironhands

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Posted 02 September 2013 - 08:53 PM

It likely is your anxiety causing your "need to go to sleep" and not cataplexy.  Cataplexy would be almost fainting, while still remaining conscious.  Many, if not most, can't fight it and just go completely limp for a few minutes.  At least, that's my understanding.  It hasn't happened to me.

 

Your hallucinations sound like mine.  I didn't think it counted as a hallucination if you understood that you were in a sleepy state, and that it wasn't real.  Apparently it does.  It won't affect your test results, it just means that your chances for being diagnosed have increased substantially.

 

I don't fall asleep anywhere I wouldn't normally, though I can often drift off at work.  At my PSG it took me 45 minutes to fall asleep, and I was awake for 2 hours in the middle ready to flog the tech for constantly waking me up every 5 minutes.  Huge anxiety "event".  

 

For 3 - well, crazy can certainly cause SOREMs.  Schizophrenia, and chronic depression can lead to them showing up on a test, as can sleep deprivation.

 

My non-medical opinion in summary with absolutely no basis for the assumptions:

 

Your PSG shows evidence of mild sleep apnea.  This can lead to poor sleep, low oxygen saturation, and will result in being tired all the time, lack of focus, and depression.  Not sure if it's obstructive, or central nervous system related, but your doctor can clarify that, and will when they recommend your CPAP - you may need an auto-pap or a bi-pap.  I would highly recommend checking out cpaptalk.com for assistance with your machine, it's a really active forum with some really good people who can help with your adjustment to the device.

 

Your PSG also shows evidence of symptoms associated with narcolepsy, however, given the incidence of the apnea events, I would say it would be a little quick to provide a concrete diagnosis of narcolepsy.  An additional study would be required once the apnea and CPAP therapy have had time to impact your lifestyle and allow your body to recover.

 

Realistically, I'd say it's likely you have both, but you may still find noticeable improvement after the CPAP.

 

Definitely not a false-positive on the MSLT, but it may not necessarily be a positive for narcolepsy (but it's still highly likely).



#12 ironhands

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Posted 02 September 2013 - 09:00 PM

Has anyone been diagnosed and treated for ADHD and/or anxiety/depression before being toasted, diagnosed, and treated for apnea and/or narcolepsy?
 

 

Every doctor I saw took one look at me and said "depression".  I was on Paxil for a year and a half, then welbutrin, then citalopram (what's the American name?).  Only the most recent doctor I saw said "it's not a mood disorder, you're exhausted".  Are most neurologists also psychiatrists as well?  Mine was.  Makes for a great combo.

 

Welbutrin kept me up, paxil screwed my dreaming big time and caused hallucinations - I was up to 60mg when I quit it.  Citalopram and ritalin was next, and I was passing out at 2pm every day at work.  It sounds strange, but all of those drugs made my sleepiness worse.  Caffeine stays in my system all day and won't let me sleep.  If I have a large coffee in the morning i'll be up till 4am, and useless the next day.  Before coffee I was drinking 2-3 liters of diet-coke a day, pretty much non-stop.  Hoping a vigil will straighten me out, and really hoping it'll kill my diet.



#13 kelsey89

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Posted 02 September 2013 - 11:06 PM

That doesn't sound strange at all. Well at least the Ritalin part...I don't understand why doctors still prescribe it...it's the original... shortest lasting...biggest crash? Could that be why your sleepiness worse? The crash?

I feel ya on the caffeine though I can usually and will have a caffeinated drink if I'm up before 7 or have to work a double where I'll be at the bar until 2-3am after my day shift.

Now that I think about I usually dozed off in class no matter how much sleep I got. Which of course being college always varied. And doesn't everyone? I thought so! Especially finance and accounting. Yawn! I guess when it comes it work I've only worked retail since I was 16 so being on my feet all day, even during the most ridiculously boring days wasn't exactly conducive to sleep especially in heels. Apparently neither is my absolutely ridiculous schedule.

You should have seen my neurologist's face when I told him I haven't had a daily routine sice high school and retail means a possibility of 6 different 8 hour shifts from 7am-10pm everyday (Sundays we're only open from 12-6 but) it's rare to have a weekend day off and even rarer to get two days off in a row. Thats just my life since graduation before that i worked "part time" (always more) and was a full time student. He was like ahhhh try to get on a schedule. I'm trying! Maybe I am sleep deprived. I always knew I didn't want to be in retail forever but thought I could do it for a few years while I got my MBA. Now with this diagnosis my doctor says find a routine, for my sanity's sake find a 9-5 if possible and preferably not on my feet all day. I guess that means goodbye bar too. Ahhhh so overwhelmed!

Anyways nuvigil has definitely killed mine but the downside is when you get hungry and don't want to eat. Then the headaches come and food equals energy right. It's a vicious cycle but you get used to it. Just make sure once it wears off not to binge eat like me...appetite comes back full force especially if you avoid or forget to eat all day.

Getting the 20 mg of Paxil out of my system was emotional and mental hell. I've heard Celexa is awful too. Wellbutrin is I've heard is the worst. I don't know how you did it! All three times too!

Btw I used to be addicted to Bikram Yoga. But I haven't gone very much since moving 30 minutes away and working full time. I used to go religiously when I could walk there. It's amazing. You sweat your ass off but it's great for the mind and body for detox and major weight-loss. 90 minute meditation all about you. Just remember to breathe and drink lots of water. :)

#14 ironhands

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Posted 03 September 2013 - 09:22 AM

I was only on welbutrin for a few weeks.  paxil about 18 months, at triple your dose.

 

I had caffeine yesterday.  I slept 2 hours last night.  I'm completely useless today. 



#15 Livi

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Posted 05 September 2013 - 06:31 PM

You can't get a false positive unless you're sleep deprived for a week.

 

Your results are conclusive. 

 

I'm a 3-REM narcoleptic with EDS as my only symptom.  Very mild cataplexy that I wouldn't even consider clinically significant.

Sleep latency was 0.7 minutes.

REM came in 3.5 minutes, 8 minutes, 8 minutes.

 

Conclusive.  So is yours.







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