Should I trust my MSLT?

[robysue1]

You say you are fatigued, exhausted, and "dead tired." But here's the thing: There is a difference between fatigue (tiredness) and sleepiness. Sure being exhausted results in a desire to be able to go to sleep in hopes that it will fix being tired.

This is exactly it. You said it so succinctly. I WANT to take a nap and sometimes do, but it NEVER relieves what ails me, because as you describe I am taking a prescription for a problem I don't have and expecting it to work.

So are you wanting to take a nap because you are tired and exhausted and you're hoping getting some sleep might help?

Or are you wanting to take a nap because you are yawning uncontrollably and your eyes feel like they need toothpicks to keep them open?

Finally you write:

I don't have hypersomnia as I sleep around 6-8 hours every night and feel compelled to get up around 7am

When you say you get 6-8 hours of sleep and you get up around 7am, does that mean you are going to bed between 11pm and 1am most nights and that you think you are asleep most of the night?

Or do you mean that you go to bed around 10:00, so you're in bed for a full 9 hours, but you just don't get 9 hours of sleep and you kind of wish you could get 9 solid hours of sleep?

Great question. The former. I go to bed between 11-12:30AM and get up at 6:35-7:30 because at that point I can't go back to sleep. It won't happen. No additional attempts yield results more than a few minutes of sleep.

So it seems like your body doesn't want to be in bed for more than about 7 or 7.5 hours or so. That's not an issue in and of itself: Not everyone needs the proverbial 8 or 9 hours of sleep every night.

But now for a question that goes to the heart of the sleep stage misperception that was mentioned on your titration study: If you are in bed from 11:30pm until 7:00am, how much actual sleep do you feel like you get during the 7.5 hours you were in bed? And why?

[Billymadison420]

So are you wanting to take a nap because you are tired and exhausted and you're hoping getting some sleep might help?

Or are you wanting to take a nap because you are yawning uncontrollably and your eyes feel like they need toothpicks to keep them open?

I am wanting to take a nap because I feel exhausted. My body feels heavy. My head feels heavy. My eyes feel sunken in. I do not feel like I will fall asleep against my will. I do not even necessarily feel like I fall or will fall asleep. But I feel like I want to take a nap so I can get some energy back. I am yawning uncontrollably often at this time. It does not feel succinctly the same as what I feel around 10:30 PM in front of a TV where I cannot keep my eyes open and I am fighting sleep. Around that time is when I may begin to fall asleep or feel like I’m going to fall asleep against my will. In the afternoon or mid morning is when I feel like I want to crawl back into bed if I put my CPAP on and lie down. I might fall asleep in between 13 minutes or 45 minutes. Or I might not and just get up.

But now for a question that goes to the heart of the sleep stage misperception that was mentioned on your titration study: If you are in bed from 11:30pm until 7:00am, how much actual sleep do you feel like you get during the 7.5 hours you were in bed? And why?

100% depends on the context. If I'm taking the full dosage of my medication that I currently take, oxcarbazepine, I feel that I close my eyes at 11:45 PM, I'm asleep within six minutes or so, and then I wake up around 6:45 and despite being very tired and not wanting to get out of bed, I am not asleep and my body wants to get up. So lets say in this case my perception is 7 hours.

If I am on the half dosage it's probably closer to what I felt on the sleep study, in that I feel I am awake somewhat frequently, and if I'm in bed at 11:45, and trying to get to sleep, it will take similarly long but maybe about 20 min to sleep. Then I will feel awake around 4:45 AM and somewhat compelled to get up. Then if I try to get to sleep I will maybe fall back asleep till 6:15AM. And that's as long as I can be in bed expecting to get any more sleep. So lets say in this case my perception is 5 hours.

Both of these figures are my sleep perception. Ironically with the latter, I feel more awake than the former.

And just to paste from the other topic:

Known good night of sleep (felt really good next day)
https://sleephq.com/public/77451786-5b5 ... 6db9a5d5f7

Known bad night of sleep (felt bad next day, I had multiple alcoholic drinks):
https://sleephq.com/public/08635b16-27e ... 9ec4962e00

Known good night of sleep (felt good the next day):
https://sleephq.com/public/b3cebc5d-ec8 ... 2558f0e934

[colomom]

Long story short. I had a Pulmonologist tell me that because of a home sleep study that had some extended REM %'s (35-40) for 3 nights and the fact that I was tired all the time that I had Narcolepsy/IH. He was sure of it. He immediately put me on Provigil/Sunosi/Adderall. I don't know what his motivations were.

I then saw a Board Certified Sleep Specialist at a major University. She said the following

1. You don't have Narcolepsy
2. The MSLT shows I am objectively not sleepy
3. Home sleep study's are a SUPPOSITION and cannot accurately detect REM without an EOG
4. Even if those REM %'s were true, and even if they were on a PSG that is NOT a Narcolepsy criteria
5. I had no SOREM's during my naps, and my sleep latency was 16minutes. (i was extremely tired and sleepy during the MSLT so i feel it was accurate)
6. What the pulmonologist did was completely out of line. He never should have put that thought in my head.

A home sleep study seems inadequate to diagnose narcolepsy, a PSG followed by an MSLT is the gold standard. The reason they require the PSG before the MSLT is that they need to see that sleep the night before the MSLT is adequate. Narcolepsy shouldn’t be diagnosed if you have untreated or inadequately treated OSA or other sleep disorders.

“An overnight PSG followed by an MSLT can exclude other causes of excessive daytime sleepiness (EDS), especially sleep apnea, and can provide information about EDS by measuring sleep latency and sleep-onset rapid eye movement periods (SOREMPs). The overnight PSG findings typically are normal in narcolepsy, though they may show sleep fragmentation. All central nervous system (CNS) stimulants and sedative-hypnotics should be discontinued 2 weeks before the PSG and MSLT.
The MSLT involves 5 opportunities to nap at 2-hour intervals over the day. More than 2 SOREMPs and a mean sleep latency of less than 8 minutes strongly suggest narcolepsy. These findings are not completely specific and also can be seen in patients with severe sleep deprivation, delayed sleep phase disorder, or severe sleep apnea. For these reasons, a PSG of the previous night is necessary for interpretation of the MSLT; MSLT cannot be used alone to confirm or rule out narcolepsy.
https://emedicine.medscape.com/article/ ... -workup#c8

My son who was a teenager at the time was suspected of having narcolepsy. He had a brilliant sleep doc/ pulmonologist who was affiliated with a large teaching hospital. Before his sleep doc did his MSLT his sleep doctor said both his OSA and delayed phase circadian rhythm disorder treated needed to be well treated. Fortunately he didn’t have narcolepsy.

If I were in your shoes I would listen to the sleep doctor. The question then becomes why are you so fatigued? Hopefully some of the wise people on this forum can help you figure it out and keep pushing the docs to try to find something that explains your sleepiness.

[Billymadison420]

Long story short. I had a Pulmonologist tell me that because of a home sleep study that had some extended REM %'s (35-40) for 3 nights and the fact that I was tired all the time that I had Narcolepsy/IH. He was sure of it. He immediately put me on Provigil/Sunosi/Adderall. I don't know what his motivations were.

I then saw a Board Certified Sleep Specialist at a major University. She said the following

1. You don't have Narcolepsy
2. The MSLT shows I am objectively not sleepy
3. Home sleep study's are a SUPPOSITION and cannot accurately detect REM without an EOG
4. Even if those REM %'s were true, and even if they were on a PSG that is NOT a Narcolepsy criteria
5. I had no SOREM's during my naps, and my sleep latency was 16minutes. (i was extremely tired and sleepy during the MSLT so i feel it was accurate)
6. What the pulmonologist did was completely out of line. He never should have put that thought in my head.

A home sleep study seems inadequate to diagnose narcolepsy, a PSG followed by an MSLT is the gold standard. The reason they require the PSG before the MSLT is that they need to see that sleep the night before the MSLT is adequate. Narcolepsy shouldn’t be diagnosed if you have untreated or inadequately treated OSA or other sleep disorders.

“An overnight PSG followed by an MSLT can exclude other causes of excessive daytime sleepiness (EDS), especially sleep apnea, and can provide information about EDS by measuring sleep latency and sleep-onset rapid eye movement periods (SOREMPs). The overnight PSG findings typically are normal in narcolepsy, though they may show sleep fragmentation. All central nervous system (CNS) stimulants and sedative-hypnotics should be discontinued 2 weeks before the PSG and MSLT.
The MSLT involves 5 opportunities to nap at 2-hour intervals over the day. More than 2 SOREMPs and a mean sleep latency of less than 8 minutes strongly suggest narcolepsy. These findings are not completely specific and also can be seen in patients with severe sleep deprivation, delayed sleep phase disorder, or severe sleep apnea. For these reasons, a PSG of the previous night is necessary for interpretation of the MSLT; MSLT cannot be used alone to confirm or rule out narcolepsy.
https://emedicine.medscape.com/article/ ... -workup#c8

My son who was a teenager at the time was suspected of having narcolepsy. He had a brilliant sleep doc/ pulmonologist who was affiliated with a large teaching hospital. Before his sleep doc did his MSLT his sleep doctor said both his OSA and delayed phase circadian rhythm disorder treated needed to be well treated. Fortunately he didn’t have narcolepsy.

If I were in your shoes I would listen to the sleep doctor. The question then becomes why are you so fatigued? Hopefully some of the wise people on this forum can help you figure it out and keep pushing the docs to try to find something that explains your sleepiness.

Thanks for the run down! I agree I don't think I have narcolepsy. But I do want to find out why I am so bone tired. Thx again <3

[robysue1]

So are you wanting to take a nap because you are tired and exhausted and you're hoping getting some sleep might help?

Or are you wanting to take a nap because you are yawning uncontrollably and your eyes feel like they need toothpicks to keep them open?

I am wanting to take a nap because I feel exhausted. My body feels heavy. My head feels heavy. My eyes feel sunken in. I do not feel like I will fall asleep against my will. I do not even necessarily feel like I fall or will fall asleep. But I feel like I want to take a nap so I can get some energy back.

These are daytime fatigue/exhaustion symptoms. And fatigue is not the same as sleepiness. It's quite possible that your fatigue is caused by something unrelated to your sleep patterns now that the OSA is treated and under control.

Fatigue and exhaustion are symptoms of a wide range of medical conditions. They can also be side effects of a whole bunch of medications. If you haven't had a long talk about your fatigue and exhaustion with your primary care doctor, it would be worth setting up an appointment with your PCP to focus on this. Be sure to bring the sleep test results with you so that you can tell the PCP that the sleep doc has ruled out narcolepsy.

I am yawning uncontrollably often at this time. It does not feel succinctly the same as what I feel around 10:30 PM in front of a TV where I cannot keep my eyes open and I am fighting sleep. Around that time is when I may begin to fall asleep or feel like I’m going to fall asleep against my will.

Why not just go to bed at 10:30pm when you first start feeling this sleepy? Seriously, your body is trying to tell you it's bedtime at 10:30, but elsewhere you have indicated that you typically go to bed between 11:30 and 12:30 and the data you've posted usually shows you turn your machine on sometime between 11:30 and 12:30. If you force yourself to stay awake for another hour or so, that can wind up making it more difficult to get to sleep at the beginning of the night and delaying bedtime past when you first start to get really sleepy can also make your sleep less restful.

In the afternoon or mid morning is when I feel like I want to crawl back into bed if I put my CPAP on and lie down. I might fall asleep in between 13 minutes or 45 minutes. Or I might not and just get up.

What is driving that desire to "crawl back into bed"? Is it fatigue and the hope that a nap might refresh you? Or is it actual sleepiness? From what you've written, I would guess that it's fatigue.

But now for a question that goes to the heart of the sleep stage misperception that was mentioned on your titration study: If you are in bed from 11:30pm until 7:00am, how much actual sleep do you feel like you get during the 7.5 hours you were in bed? And why?

100% depends on the context. If I'm taking the full dosage of my medication that I currently take, oxcarbazepine, I feel that I close my eyes at 11:45 PM, I'm asleep within six minutes or so, and then I wake up around 6:45 and despite being very tired and not wanting to get out of bed, I am not asleep and my body wants to get up. So lets say in this case my perception is 7 hours.

If I am on the half dosage it's probably closer to what I felt on the sleep study, in that I feel I am awake somewhat frequently, and if I'm in bed at 11:45, and trying to get to sleep, it will take similarly long but maybe about 20 min to sleep. Then I will feel awake around 4:45 AM and somewhat compelled to get up. Then if I try to get to sleep I will maybe fall back asleep till 6:15AM. And that's as long as I can be in bed expecting to get any more sleep. So lets say in this case my perception is 5 hours.

Both of these figures are my sleep perception. Ironically with the latter, I feel more awake than the former.

If you feel better when you are on the half dose, it sounds like the oxcarbazepine itself might be causing some of your non-restorative sleep. It could be the medication is masking the restless periods that are still there and they're causing more disruption than it appears.

Oxcarbazepine is an anti-convulsant drug that is sometimes used off-label to treat other conditions. Do you know why oxcarbazepine was prescribed to you? You might want to talk to the doc who prescribed this drug and ask him/her whether it might be adversely affecting how you are feeling during the daytime and/or adversely affecting your sleep in some way.

[Billymadison420]

I am wanting to take a nap because I feel exhausted. My body feels heavy. My head feels heavy. My eyes feel sunken in. I do not feel like I will fall asleep against my will. I do not even necessarily feel like I fall or will fall asleep. But I feel like I want to take a nap so I can get some energy back.
These are daytime fatigue/exhaustion symptoms. And fatigue is not the same as sleepiness. It's quite possible that your fatigue is caused by something unrelated to your sleep patterns now that the OSA is treated and under control.

Fatigue and exhaustion are symptoms of a wide range of medical conditions. They can also be side effects of a whole bunch of medications. If you haven't had a long talk about your fatigue and exhaustion with your primary care doctor, it would be worth setting up an appointment with your PCP to focus on this. Be sure to bring the sleep test results with you so that you can tell the PCP that the sleep doc has ruled out narcolepsy.

I agree. I think it is fatigue too. Case in point. I woke up wide awake this morning at 5:00am. First night back on the half tablet. I had ok energy for a few hours and then crashed 45 minutes ago. Attempted to take a nap, but spent about 30 minutes in bed and didn't fall asleep.

Why not just go to bed at 10:30pm when you first start feeling this sleepy? Seriously, your body is trying to tell you it's bedtime at 10:30, but elsewhere you have indicated that you typically go to bed between 11:30 and 12:30 and the data you've posted usually shows you turn your machine on sometime between 11:30 and 12:30. If you force yourself to stay awake for another hour or so, that can wind up making it more difficult to get to sleep at the beginning of the night and delaying bedtime past when you first start to get really sleepy can also make your sleep less restful.

The major motivation is to stay up and hang out with my wife LOL. But I agree I probably should just listen to my body. I used to have a bedtime of like 9-10:30.

What is driving that desire to "crawl back into bed"? Is it fatigue and the hope that a nap might refresh you? Or is it actual sleepiness? From what you've written, I would guess that it's fatigue.

The feeling of wanting to crawl back into bed feels like this:
1. Cognitively slower
2. Whole body feels tired
3. Our of it/Spacey
4. Feel heavy
5. Thinking and acting become so full of effort
6. Feel extremely irritable and short-tempered
7. Want to just be comfy and snuggle with my dog
8. Hoping that lying down will relieve the above

It feels similar to sleepiness but not quite the same.

After lying down for 30 minutes whether or not I sleep, I feel some relief. Although very little.

Do you know why oxcarbazepine was prescribed to you? You might want to talk to the doc who prescribed this drug and ask him/her whether it might be adversely affecting how you are feeling during the daytime and/or adversely affecting your sleep in some way.

I am bi-polar both by diagnosis and by my own realization. Even if one rejects that categorization I have very wide swings from euphoric to in tears and crying/devastated. This has been so since I was 12-13. I was on Remeron the last year and just recently switched. Believe it or not, the Remeron (anti-histamine) was way worse. At least with the oxcarbazepine I feel like MYSELF.

Also, truth be told I have been tired like this off and on since I was 15-16. I did have a lot of ACE (Adverse Childhood Events) and trauma/PTSD. So it truly could just be a learned Trauma response (the fatigue and wanting to hop into bed. I mean I work a full-time job, I have some semblance of a life, and I am taking care of my mom that has ALS. God I just know my potential though. If I had energy and pep in my step I could do so much more.

Thank you for engaging in this discussion with me. It really helps and makes me feel less alone. I also just saw your comments about pressures. I will take a closer look at that any my machine. You are right about the fact that I have a known titration study that showed optimal pressures.

Ultimately ultimately, with the PSG that even though my sleep was somewhat impaired it wasn't enough to cause the tiredness I was describing.

[Miss Emerita]

Both drowsiness and tiredness are potential side-effects of oxcarbazepine, so you might want to talk with your doctor about trying a different drug. Beyond that, you should explain to your doctor what you've explained in response to RobySue: you are fatigued during the day, though not necessarily sleepy.

If you haven't been tested for other conditions, I hope you will be. Examples include low testosterone (for me), thyroid problems, autoimmune disease, and anemia. Any chance you have long Covid? It can be hard to track down the origin of fatigue, and unfortunately it can take a lot of perseverance on the part of the patient.

It's quite possible that your fatigue is primarily related to your suspected mental illness, but it's also possible it's not. It can be hard to get doctors to look beyond the obvious, so again, that can take perseverance.

And RobySue has made a great suggestion: go to bed at 10:30!

[lazarus]

RobySue has made a great suggestion: go to bed at 10:30!

I need to start doing better at that, too, myself. Good advice!

[Rubicon]

RobySue has made a great suggestion: go to bed at 10:30!

I need to start doing better at that, too, myself. Good advice!

10:30!?

I haven't seen 10:30 since the Billy Joel concert!

And frankly he looked like he should have been in bed at 10!

[lazarus]

RobySue has made a great suggestion: go to bed at 10:30!

I need to start doing better at that, too, myself. Good advice!

10:30!?

I haven't seen 10:30 since the Billy Joel concert!

And frankly he looked like he should have been in bed at 10!

Did you take your daily nap in the middle of the concert, like during the break of Summer, Highland Falls, or something?

Oh, wait, I'm always confusing "biphasic" with "bipolar."

Never mind.

[Billymadison420]

Both drowsiness and tiredness are potential side-effects of oxcarbazepine, so you might want to talk with your doctor about trying a different drug. Beyond that, you should explain to your doctor what you've explained in response to RobySue: you are fatigued during the day, though not necessarily sleepy.

For sure it does add some, but I would feel this drowsy with or without medication. I know because I have only been on medication for the last year. Less than a year.

If you haven't been tested for other conditions, I hope you will be. Examples include low testosterone (for me), thyroid problems, autoimmune disease, and anemia. Any chance you have long Covid? It can be hard to track down the origin of fatigue, and unfortunately it can take a lot of perseverance on the part of the patient.

Definitely going to be asking about all of these. I am a big time hypochondriac and my mom has ALS (random not familial) so I am super scared of something like MS, but other than Fatigue i have zero of the symptoms of that. And I guess if it was autoimmune, is there even treatment for that stuff?

It's quite possible that your fatigue is primarily related to your suspected mental illness, but it's also possible it's not. It can be hard to get doctors to look beyond the obvious, so again, that can take perseverance.

I suspect its likely due to that as well, the mental illness.

And RobySue has made a great suggestion: go to bed at 10:30!

I will go to bed when I am truly sleepy

[Billymadison420]

RobySue has made a great suggestion: go to bed at 10:30!

I need to start doing better at that, too, myself. Good advice!

10:30!?

I haven't seen 10:30 since the Billy Joel concert!

And frankly he looked like he should have been in bed at 10!

Fatigued State Of Mind

[Rubicon]

RobySue has made a great suggestion: go to bed at 10:30!

I need to start doing better at that, too, myself. Good advice!

10:30!?

I haven't seen 10:30 since the Billy Joel concert!

And frankly he looked like he should have been in bed at 10!

Fatigued State Of Mind

See above.

He was "sleepy", not "fatigued".

[Billymadison420]

RobySue has made a great suggestion: go to bed at 10:30!

I need to start doing better at that, too, myself. Good advice!

10:30!?

I haven't seen 10:30 since the Billy Joel concert!

And frankly he looked like he should have been in bed at 10!

Fatigued State Of Mind

See above.

He was "sleepy", not "fatigued".

Perhaps he indulged too much in a....bottle of red?

[robysue1]

RobySue has made a great suggestion: go to bed at 10:30!

I need to start doing better at that, too, myself. Good advice!

10:30!?

I haven't seen 10:30 since the Billy Joel concert!

And frankly he looked like he should have been in bed at 10!

Me? I'm seldom sleepy enough to go to bed much before 12:30 or 1:30. But on those rare occasions when I do get sleepy by 11:30, I do now tend to go to bed.