Should I trust my MSLT?

[Billymadison420]

I promise this is the last time I will post about this here, and then I am going to move on to get a third opinion about this from a Sleep Specialist.

PSG: https://www.dropbox.com/s/mnzns34ikliyzws/PSG.jpeg?dl=0
MSLT: https://www.dropbox.com/s/naemldy0krs4pgh/MSLT.jpg?dl=0

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.

So anyway, yeah that is where I am at. I am still tired all the time. I don't have hypersomnia as I sleep around 6-8 hours every night and feel compelled to get up around 7am. I do have depression. I do have anxiety. I am also off the medication I was on during the sleep study that made me more tired.

I guess I need someone with some knowledge to tell me to let this go.

I don't have:
1. Hallucinations (i thought I did, I don't)
2. Cataplexy
3. Any other Narc symptoms


Yet I remain dead tired.

[palerider]

3. Home sleep study's are a SUPPOSITION and cannot accurately detect REM without an EOG

Lumping the three types of home tests into one bucket is a sign of ignorance. Type II have EEG.

[Billymadison420]

3. Home sleep study's are a SUPPOSITION and cannot accurately detect REM without an EOG

Lumping the three types of home tests into one bucket is a sign of ignorance. Type II have EEG.

I was told by the Board Certified Sleep specialist that the home study I received was not accurate despite being a 2 lead EEG because without an EOG the REM % is just a supposition.

[babydinosnoreless]

You were told by the pulmonologist that you had narcolepsy. Clearly experts can be wrong. It depends on how much more money you want to toss at the problem. Me I would post some oscar charts and have the experts here help you get your pap machine dialed in. At least you will get some sleep that way.

[Billymadison420]

You were told by the pulmonologist that you had narcolepsy. Clearly experts can be wrong. It depends on how much more money you want to toss at the problem. Me I would post some oscar charts and have the experts here help you get your pap machine dialed in. At least you will get some sleep that way.

I want to make sure I’m not misinterpreting you. Are you saying the pulmonologist is wrong, or the sleep specialist that is board-certified is wrong? Or are you not saying either? It seems to me that the Pulmonologist was basing his assertions on completely crap-data and without a PSG/MSLT. Even when presented with the PSG/MSLT he refused to even admit it was possible he was wrong.

I asked the BCSP if she would have ever even uttered N/IH to me to begin with and she said "no absolutely not, I have never thought you had N/IH".

I’ve done a fair bit of chart posting, but I’ll post again. I’ve been told it is sleep maintenance, insomnia. Despite the fact that I am never consciously awake during the night.

Anyway here is my OSCAR data

https://www.dropbox.com/s/t33ymutotldhr ... 2.zip?dl=0

[lazarus]

Docs try to qualify you to try treatments. They don't 'put you on' anything. You agree to try the treatments they offer to see if they help. If they don't, you move on, based on lack of response to treatment. You don't fault the doc for 'putting ideas in your head.' They have to discuss ideas with you. Then when an idea is no longer useful to you, you are the only member of your team who can subsequently say, "OK, I tried that, it ain't working, what do I try next?" So, to my way of thinking, pulmo doc wasn't necessarily wrong for allowing you to try a treatment to see if you got any benefit, regardless of the validity of the details of the testing methods and interpretation. Tests are always imperfect snapshots of a point in time.

Fixing sleep-breathing to the extent possible only gets one possible cause of depression and anxiety out of the way, allowing for exploration of other causes of those highly tiring conditions. Once PAP is optimized for the best sleep possible, you and your team can then focus on the best approaches to any other medical conditions that can also make you feel very tired.

I am sorry your journey hasn't been direct or smooth. But there is more than one way to get there. Multiple inter-related complicated conditions are often best addressed in person rather than over the Internet, though. May you get the best team possible, one you can trust, as you optimistically keep trying things together.

[babydinosnoreless]

You were told by the pulmonologist that you had narcolepsy. Clearly experts can be wrong. It depends on how much more money you want to toss at the problem. Me I would post some oscar charts and have the experts here help you get your pap machine dialed in. At least you will get some sleep that way.

I want to make sure I’m not misinterpreting you. Are you saying the pulmonologist is wrong, or the sleep specialist that is board-certified is wrong? Or are you not saying either? It seems to me that the Pulmonologist was basing his assertions on completely crap-data and without a PSG/MSLT. Even when presented with the PSG/MSLT he refused to even admit it was possible he was wrong.

I asked the BCSP if she would have ever even uttered N/IH to me to begin with and she said "no absolutely not, I have never thought you had N/IH".

I’ve done a fair bit of chart posting, but I’ll post again. I’ve been told it is sleep maintenance, insomnia. Despite the fact that I am never consciously awake during the night.

Anyway here is my OSCAR data

https://www.dropbox.com/s/t33ymutotldhr ... 2.zip?dl=0

I'm not saying either is wrong or right. I am saying be skeptical. I like to point out that ALL doctors are practicing. When two are directly contradicting each other it is time for more questions.

I am unable to see the stuff you posted, my cell phone says the file is to big but hopefully the board experts can. They are good at helping to get your pressure dialed into where it should be.

I didn't realize you had another thread started somewhere. I do know its usually helpful to the experts if you keep all of your therapy info in one thread.

[Billymadison420]

Docs try to qualify you to try treatments. They don't 'put you on' anything. You agree to try the treatments they offer to see if they help. If they don't, you move on, based on lack of response to treatment. You don't fault the doc for 'putting ideas in your head.' They have to discuss ideas with you. Then when an idea is no longer useful to you, you are the only member of your team who can subsequently say, "OK, I tried that, it ain't working, what do I try next?" So, to my way of thinking, pulmo doc wasn't necessarily wrong for allowing you to try a treatment to see if you got any benefit, regardless of the validity of the details of the testing methods and interpretation. Tests are always imperfect snapshots of a point in time.

Fixing sleep-breathing to the extent possible only gets one possible cause of depression and anxiety out of the way, allowing for exploration of other causes of those highly tiring conditions. Once PAP is optimized for the best sleep possible, you and your team can then focus on the best approaches to any other medical conditions that can also make you feel very tired.

I am sorry your journey hasn't been direct or smooth. But there is more than one way to get there. Multiple inter-related complicated conditions are often best addressed in person rather than over the Internet, though. May you get the best team possible, one you can trust, as you optimistically keep trying things together.

Really appreciate the way you put that. That was very kind of you to say. I think it is fair to say that I should be looking other places than sleep disorders/OSA at this point for what ails me.

[Billymadison420]

You were told by the pulmonologist that you had narcolepsy. Clearly experts can be wrong. It depends on how much more money you want to toss at the problem. Me I would post some oscar charts and have the experts here help you get your pap machine dialed in. At least you will get some sleep that way.

I want to make sure I’m not misinterpreting you. Are you saying the pulmonologist is wrong, or the sleep specialist that is board-certified is wrong? Or are you not saying either? It seems to me that the Pulmonologist was basing his assertions on completely crap-data and without a PSG/MSLT. Even when presented with the PSG/MSLT he refused to even admit it was possible he was wrong.

I asked the BCSP if she would have ever even uttered N/IH to me to begin with and she said "no absolutely not, I have never thought you had N/IH".

I’ve done a fair bit of chart posting, but I’ll post again. I’ve been told it is sleep maintenance, insomnia. Despite the fact that I am never consciously awake during the night.

Anyway here is my OSCAR data

https://www.dropbox.com/s/t33ymutotldhr ... 2.zip?dl=0

I'm not saying either is wrong or right. I am saying be skeptical. I like to point out that ALL doctors are practicing. When two are directly contradicting each other it is time for more questions.

I agree. I am getting one more opinion from a separate Board-Certified-Sleep-Specialst and I will let them be the tie breaker. After that I am moving off of the topic.

[lazarus]

I am thankful for PAP. It makes treating everything else go better. But treating everything else is still necessary for me.

I wish you all the best, Billymadison420.

[Billymadison420]

I am thankful for PAP. It makes treating everything else go better. But treating everything else is still necessary for me.

I wish you all the best, Billymadison420.

Yep, it can't be God. I can say my IBS went away, and my blood pressure normalized with PAP therapy. Double win. So elsewhere I will look for the fatigue. Take care! Thank you.

[robysue1]

I would trust the MSLT that was read by a certified sleep doctor over the pulmonologist's intuition.

Having said that, I would also be asking some questions about the titration study as well: There's a note on the titration study that states: Sleep state misperception seems to be present. Clinical correlation is suggested.

The reason that statement is on your titration study is that you vastly overestimated how long it took you to get to sleep and you also vastly overestimated the time you were awake during the night, and hence you vastly underestimated the amount of sleep you got.

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. But being sleepy is when you are actually feeling like you just might actually fall asleep even if you want to stay awake.

I bring this up specifically because both depression and anxiety (which you say you have) can lead to feelings of daytime fatigue and exhaustion: It's mentally wearing and exhausting to be down/sad much of the time, and it's mentally wearing and exhausting to be anxious much of the time. Add to that the fact that you may have a tendency to significantly underestimate the amount of sleep you actually get, and it's easy to see why you might confuse your daytime exhaustion as daytime sleepiness and blame the daytime fatigue on not getting decent quality sleep.

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?

[Billymadison420]

I would trust the MSLT that was read by a certified sleep doctor over the pulmonologist's intuition.

I am going to take that and run with it. I may be selective in what I want to hear, but this is what I need to hear.

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.

I bring this up specifically because both depression and anxiety (which you say you have) can lead to feelings of daytime fatigue and exhaustion: It's mentally wearing and exhausting to be down/sad much of the time, and it's mentally wearing and exhausting to be anxious much of the time. Add to that the fact that you may have a tendency to significantly underestimate the amount of sleep you actually get, and it's easy to see why you might confuse your daytime exhaustion as daytime sleepiness and blame the daytime fatigue on not getting decent quality sleep.

This x 2. Can I pay you for your time? What is your hourly rate?

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.

[babydinosnoreless]

I agree. I am getting one more opinion from a separate Board-Certified-Sleep-Specialst and I will let them be the tie breaker. After that I am moving off of the topic.
[/quote]

Oh good to hear. So many people treat medical professionals like gods that can do no wrong. My experiences have taught me different and I treat anything that comes from a doctor with a good healthy does of skepticism. The more letters they have after their names the less I trust them. Lol.

[robysue1]

I asked the BCSP if she would have ever even uttered N/IH to me to begin with and she said "no absolutely not, I have never thought you had N/IH".

I’ve done a fair bit of chart posting, but I’ll post again. I’ve been told it is sleep maintenance, insomnia. Despite the fact that I am never consciously awake during the night.

That's not exactly what happened on the titration study: You subjectively thought it took you 10 times as long to get to sleep as it actually did.

And you underestimated the total amount of sleep you got by 1/3 to 1/2.

In other words, you may say that you never consciously wake up during the night, but when you were asked, "How long did it take you to get to sleep?" and "How much sleep do you think you actually got during the night?" your subjective answers were way off the mark.

Now it's common among people with insomnia to underestimate how much sleep they get. And that may be what you mean by saying you've been told "it is sleep maintenance insomnia."

Treating sleep maintenance insomnia is not particularly easy: Sleep meds do nothing to really help consolidate sleep cycles to eliminate microwakes and arousals and the cognitive behavior therapy for insomnia can require changes that some people are simply unwilling to do even for a short period of time.