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What Were Your Mslt Results & Diagnosis?


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#41 ironhands

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Posted 24 August 2013 - 01:13 PM

marriage is highly overrated, look at how many married people are miserable :P

 

Seriously, nothing wrong with being single.  Nice to have someone around once in a while, I get that, but why is it that we put so much weight on a career and marriage as a measure of worth?  You can get the same level of fulfillment from a cat, volunteer work (especially with kids) and dating once in a while if you really find the urge.



#42 Livi

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Posted 24 August 2013 - 01:23 PM

Thanks for the smile. :) Do want my own family and kids though.... Someone to love and be loved by.... I'm kind of a romantic <sigh>. :)
Not a measure of worth though. I get my worth from God, not from human standards of status, popularity, wealth, beauty, success, or even what others think of me.

#43 Hank

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Posted 01 September 2013 - 10:52 AM

marriage is highly overrated, look at how many married people are miserable :P

 

Seriously, nothing wrong with being single.  Nice to have someone around once in a while, I get that, but why is it that we put so much weight on a career and marriage as a measure of worth?  You can get the same level of fulfillment from a cat, volunteer work (especially with kids) and dating once in a while if you really find the urge.

I agree strongly. I am married for 15 years with 3 children 13, 13 and 9.

 

A family is a wonderful, exhausting, loving, draining, expensive and demanding hobby. There is no time off for good behavior, no exit strategy, and is an enormous responsibility.

 

I do not intend to sound negative- just bracingly realistic.

 

I would not trade what I have for anything- and I love being a husband and father.

 

Choosing the role of spouse and parent is more about what you can give to others than what you want others to give.

 

If you want someone to love you and lots of positives without the negatives- there are lots of ways to get that. Dogs, for me, are a great source of unconditional love, happiness, comfort and protection.

 

Family is all of those things combined with stress, financial strain, frustration, selflessness, exhaustion and uncertainty. It is certainly the toughest job you will ever love- if it does not destroy you or someone else in the process.

 

Children are a crap shoot- they go through phases that require enormous patience and guidance. Some have special needs and you may get little back for a long, long time.

 

It is a commitment that requires years of giving with little in return- so those little things must carry enough value and importance to carry you through with a smile on your face and love in your heart.

 

You need to smile at vomit on your clothes and poo on your hands- stains on your carpet- crumbs and spills in our car- late nights and early mornings- hormones- cuts and bruises- illness- drama- arguments- all with a sense of beauty, amazement and pride that is found in nothing else.

 

Marriage and family amplifies your weaknesses and challenges your strengths. Your strengths and resources (personal, spiritual and financial) need to be enough to overcome your weaknesses. It is a very sobering prospect and one that continues to humble me.

 

We also rescue and train abused pit-bulls which seems quite easy in comparison. There is no EASY button or SNOOZE button.



#44 IdiopathicHypersomniac

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Posted 01 September 2013 - 01:00 PM

That's what I thought about family until I developed narcolepsy.  My family, friends, and co-workers have not been very sympathetic or all that supportive.  They don't even think it's real.  I get more kindness from my doctor.  They were around when times were good, and that's all.

 

Narcolepsy? ... oh, that's nothing.  Get up, drink a coffee!  Amphetamines? ... then I get those condescending stares like I'm a bad person for taking them.



#45 Hank

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Posted 01 September 2013 - 01:53 PM

Just wait until your family members start complaining about their prostates and menopause- they will be looking for lots of sympathy.

 

Sorry, the bathroom's occupied-you'll have to wait. Sorry about your hot flash, but my windows don't open.



#46 kelsey89

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Posted 02 September 2013 - 04:24 PM

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

Test date: July 17-18, 2013

All so new all so confusing! I really hope my sleep apnea = sleep deprivation (especially in REM) = false positive MSLT.

I don't want to be on meds the rest of my life. CPAP machine on the other hand...not pretty but not drugs messing with my brain chemistry.

Any thoughts are appreciated! :)

#47 IdiopathicHypersomniac

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Posted 02 September 2013 - 07:48 PM

The drugs are a necessary evil, and you should not feel guilty about taking them.  Millions of people take drugs for the rest of their lives for a wide range of issues -- nothing wrong with that.

 

Your feelings are perfectly normal, and I want to assure you that you will get better.

 

Your hyponea index (partial obstruction, not full) by itself could not cause a latency of 0.7 minutes, and REM in all five.  I'm afraid you have narcolepsy.



#48 Maximilian

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Posted 09 September 2013 - 11:48 PM

This is my MSLT & overnight PSG results from early 2012. Then I will post my overnight psg & MWT from mid 2013.

A lot of it I don't understand. Yet. I have been diagnosed with narcolepsy, but I am not convinced I actually have it.

 

This is the MSLT, the attached image will have the other info including sleep statistics, events and graphical summary of the PSG.

 

The question I'm asking about the overnight study is: Does it look like Narcolepsy to you?

 

nap 1: 

TIME: 8.43 min SL: 1.5 SOREM: no.

NAP 2:

TIME: 10.40 SL: 2.0 SOREM: No.

NAP 3:

TIME: 12.42 SL: 2.5 SOREM: Yes.

NAP 4:

TIME: 14.43 SL: 3.0 SOREM: No.

NAP 5:

TIME: 16.28 SL: 3.5 SOREM: Yes.

 

As you can see from the MSLT, I do fit the criteria for Narcolepsy. I don't have cataplexy (to my knowledge), I have had severe sleep paralysis in the past (but not now), and I'm unsure about hypnogogic hallucinations. I do have a quite annoying level of EDS.

 

Overnight PSG from 2012

Attached File  20130910_141930.jpg   145.47KB   1 downloads

Sleep Statistics from 2012

Attached File  20130910_141807.jpg   149.88KB   1 downloads

 

 

 

 



#49 Maximilian

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Posted 10 September 2013 - 02:41 AM

Results from 2013 overnight PSG

 

Does this look like Narcolepsy to you?

 

Overnight PSG for 2013

Attached File  20130910_151239.jpg   158.98KB   1 downloads

 

Sleep statistics for 2013

Attached File  20130910_151216.jpg   221.78KB   0 downloads

 



#50 ironhands

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Posted 10 September 2013 - 08:49 AM

The clinical criteria for N is 2 SOREMs on an MSLT, by definition, you have N.  The label doesn't really matter though, the treatment for the EDS wouldn't be much different, if at all.  Drugs to keep you awake.

 

Get up to go to the bathroom around 5am? :P

 

Nice REM latency on the PSG though.

 

Here's my PSG from a few weeks ago.  It's sheer madness.

 

IMG_20130814_145257.jpg



#51 vesper

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Posted 18 September 2013 - 08:50 AM

Reading other PSG-MSLT results helped me make sense of mine, so I'm including mine.

 

PSG: Fell asleep in 18 minutes, went into REM in 96 mins, relatively normal sleep architecture - within normal for all sleep stages, except slightly elevated stage 2 sleep. 

Total arousals: 141 or 21.9/hr (respiratory arousals: 10; LM arousals: 5; spontaneous: 126), 11 awakenings

No apneas, normal occasional hypoapneas, no significant periodic leg movements

Sleep efficiency "slightly reduced" at 89.7%, apparently due to my insomnia (life has to be a comedy to have both narcolepsy and insomnia). I was also formally diagnosed with delayed sleep phase syndrome (my PSG started at 11PM).

 

MSLT, 4 naps:

Mean sleep latency of 4 naps: 3 min (quickest: nap 2, asleep in 1 min; slowest: nap 4, asleep in 5.5 min)

REM occurred in all 4 naps, average latency 10 min from sleep onset (quickest: nap 2, 4 min; slowest: nap 1, 15.5 min)

Interesting to note: In nap 2 (where I fell asleep in 1 min), I had sleep paralysis and a hallucination halfway through. It was recorded as: went into REM after 4 mins asleep, stayed in REM for 4 minutes, brief arousal, then into n1 stage for 2 min, arousal (when I "pulled" myself out of sleep paralysis and woke up from the hallucination) for 1 min, n1 for 2 min, and back into REM for remainder of nap.

 

MSLT was rough. There was another patient, a teen boy, in the room across from me and he clearly did not have narcolepsy so they should have just sent him home immediately out of sensitivity for me ;). Here I am desperately trying to find the one corner of the room where the camera can't see me so I can sleep for just one second without getting caught. Meanwhile, he's laying in bed, watching cartoons like it would never put him to sleep, even though the bed is comfortable and warm and the cartoons can kind of sound like a lullaby if you close your eyes for one minute. When the tech asked for his sleepiness score, he replied, "Can I just say 0? I feel great."

At the end, they made me sign a paper saying that I would contact them if I decided to go on a road trip before my next appointment, and that I should probably refrain from operating any machinery in the meantime.



#52 3.8jake

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Posted 19 September 2013 - 09:10 PM

my 2009 diag for MSLT  was 4 min 52 seconds, no SOREM.  I don't have my baseline for the first test but I think my AHI was 17.  Received a pathological sleepiness and Obstructive sleep apnea diagnosis...  I've been on a down hill slide that seems to be accelerating as of late...

 

About 2 months ago I had another baseline and mslt because the nurse practitioner make sure my apnea was eliminated by my UPPP(she was thinking I'm lying about how bad my daytime sleepiness is and I'm actually a pill head)

 

Normal sleep efficiency of 86.9%

Sleeping for 456 min out of 525 minutes.  Latency to sleep was short at 6.5 min with a normal rem of 62.5.  (did my 4 hour nap 2 hours before my sleep study throw this off?)

5 distinct rem periods during night.

0 obstructive apneas

0 mixed apneas,

4 central apneas

10 obstructive hyponeas

mean O2 96%

min 90% during sleep

0% below 90%

0 limb movements

MSLT

2 SOREM's  with sleep onset at 2 min 45 seconds. (4 nap study only)

My obstructive sleep apnea was resolved after my UPPP surgery

 

My test is consistent with PARTIAL narcolepsy????????????????????????????????????????



#53 vesper

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Posted 20 September 2013 - 04:03 PM

my 2009 diag for MSLT  was 4 min 52 seconds, no SOREM.  I don't have my baseline for the first test but I think my AHI was 17.  Received a pathological sleepiness and Obstructive sleep apnea diagnosis...  I've been on a down hill slide that seems to be accelerating as of late...

 

About 2 months ago I had another baseline and mslt because the nurse practitioner make sure my apnea was eliminated by my UPPP(she was thinking I'm lying about how bad my daytime sleepiness is and I'm actually a pill head)

 

Normal sleep efficiency of 86.9%

Sleeping for 456 min out of 525 minutes.  Latency to sleep was short at 6.5 min with a normal rem of 62.5.  (did my 4 hour nap 2 hours before my sleep study throw this off?)

5 distinct rem periods during night.

0 obstructive apneas

0 mixed apneas,

4 central apneas

10 obstructive hyponeas

mean O2 96%

min 90% during sleep

0% below 90%

0 limb movements

MSLT

2 SOREM's  with sleep onset at 2 min 45 seconds. (4 nap study only)

My obstructive sleep apnea was resolved after my UPPP surgery

 

My test is consistent with PARTIAL narcolepsy????????????????????????????????????????

 

I don't have a lot of experience with many "sleep" doctors, but you might consider seeing a different one. I originally went to mine for what I thought was sleep apnea, and she told me that if sleep apnea or anything that would cause EDS shows up during the PSG, they would cancel the MSLT because many other sleep disorders can cause EDS. You had a normal night sleep, so ideally you were supposed to be well-rested the next day, and thus would have no need for naps. That, and primarily the 2 SOREMs, indicate you have narcolepsy (I don't know what partial narcolepsy is, but I'd be suspicious of that kind of diagnosis, as well), and you may have just been developing it in 2009. Regardless of all of that, if you think the nurse suspects you're fabricating your symptoms, you need to find a new doctor whom you are comfortable with. If that is not possible (I don't know where you are located), you need to work that much harder to be your own advocate. Finding a treatment for narcolepsy that works for you is a long-term process, so fight for the treatments you would like to try (regardless of whether it "looks" like you're a pill-popper or not).



#54 3.8jake

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Posted 20 September 2013 - 04:38 PM

Her opinion has changed significantly after the results has restarted the not-so-merry-go-round of different meds and dosage. Appts now for a psychiatrist and neurologist who both specialized in sleep disorders. A new family doctor I'm seeing is wanting to make sure I'm not having TIA's and some weird kind of epilepsy / seizure disorder. I couldn't catch the name. The doctor who reads the sleep results declared the results partial narcolepsy not the specialist. She is supposed to be getting clarification on the partial part as she doesn't even know where that came from... they me to start on xyrem at some point in the near future.

#55 hbananas

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Posted 19 October 2013 - 05:27 AM

In the overnight study, I had sleep onset in 4 minutes.  Normal is 8-15 minutes.
REM sleep onset in 60 minutes.  Normal is 90-120, so that is also significant.
I spend 13% of my time in the lightest form of sleep, N1.  Normal is 4-5%
I spend 35% of my time in the more restorative N2 sleep.  Normal is around 50%.  I stole N2 time to spend it in N1.
Total % of stage N3 deep sleep and REM is about normal.
 
My squirmy legs moved around 24 times an hour and caused arousals 5.2 times per hour.  That means I have moderate periodic limb movement disorder.
Total arousal index was 28 per hour.  So, about every other minute or so, my sleep gets interrupted by something.
 
The multiple sleep latency test (MSLT) showed an average sleep onset of 5.4 minutes,  indicative of severe hypersomnia.
In only one of the 5 naps did I enter REM sleep, 4.5 minutes after falling asleep.
 
I saw my sleep neurologist yesterday and she gave me the idiopathic hypersomnolence diagnosis.  She gave me a coupon for one month of nuvigil free while we wait for the approval from my insurance company.


#56 ironhands

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Posted 19 October 2013 - 09:30 AM

I wouldn't be concerned about a 60 minute REM onset, the average is around 90 minutes, many start sooner, and given the PLM issues, disturbed sleep building up from past night would likely be causing it.  I don't think many consider REM onset to be an issue until it's under 20-30 minutes.

 

Good luck with the nuvigil!



#57 Asksuzan

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Posted 05 November 2013 - 01:14 AM

Nap#1  SL 2 Min  LR 5 Min
Nap#2  SL .36 sec Min  LR 3 Min
Nap#3  SL 3 Min  LR 4 min
Nap#4  SL 6 Min  LR 9 min
Nap#5  SL 4 Min  LR 6 min

#58 NightinPhilly

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Posted 16 November 2013 - 04:01 PM

I had a PSG the first night - they observed mild sleep apena (AHI 14.2 / REM AHI 31.5) and REM Latency of 41m (sleep latency was 63m) and slept ~6 hours with sleep efficiency of 74.4%. It did take me a really long time to fall asleep - sleep latency was 63 minutes. I always have trouble going to sleep...well, at night, when I'm supposed to.
 
My MSLT results from the next day were:
Nap 1: Latency to sleep onset   6m  No SOREM
Nap 2: Latency to sleep onset   9m  No SOREM
Nap 3: Latency to sleep onset   4m  SOREM 5.5m
Nap 4: Latency to sleep onset   9m  SOREM  5m
Nap 5: Latency to sleep onset   9m  No SOREM  
 
Sadly after seeing these results I remembered telling the tech during the MSLT that I didn't sleep during 2 of the naps...I did admit to 2 dreams, one about my nephew falling down the stairs and one about work, not realizing I wasn't supposed to be dreaming. He had a great poker face. And... never confessed that I fell asleep in between one of the naps when we weren't supposed to be sleeping.  :blink:
 
So..diagnosis was narcolepsy and mild OSA. Now fighting for balance with the medication and the CPAP.


#59 ironhands

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Posted 05 December 2013 - 09:35 AM

So I haven't gotten the official results from my MSLT yesterday, but I talked to the tech after, and here's what he told me:

 

Nap 1: no sleep

Nap 2: 10 minute latency, 2 mins sleep

Nap 3: no sleep

Nap 4: no sleep

 

However, what I remember happening:

 

Nap 1: 10 mins latency, 3 microsleeps with dreams, <2 minutes

Nap 2: 10 minute latency, 1 microsleep sleep, with dreams

Nap 3: 10 minute latency, 1 microsleep, with dreams

Nap 4: no sleep

 

after each of the microsleeps I got an adrenaline burst or something and couldn't fall back to sleep.  Adds a whole new element now.  So looks like N can't be diagnosed at this point :(



#60 CatLady

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Posted 06 December 2013 - 05:58 PM

Sorry you didn't get the answers you were looking for.  :(