How to determine Good Sleep?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
lynninnj
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Re: How to determine Good Sleep?

Post by lynninnj » Sun Nov 13, 2022 5:10 pm

Billymadison420 wrote:
Sun Nov 13, 2022 10:08 am
Julie wrote:
Sun Nov 13, 2022 9:54 am
Fingers crossed for a definitive and uiseful answer. Certainly something (besides just OSA) is happening, even if 'only' depression and you need help to deal with it.

Thanks Julie.

Sadly I’m almost positive that nothing physical will come back. I won’t get answers and I will be stuck disabled and without help. This sucks.

I know I’m depressed. But depression doesn’t cause disabling fatigue. I know this because I’ve had depression my whole life. It never caused this level of exhaustion to the point of having trouble supporting my own weight. Of wanting to sleep all day everyday. I’ve never experienced that.

This is either something neurological or some sort of conversion disorder caused by someone telling me I have narcolepsy. Either way I don’t know how to change it.

I’ve been seeing an army of psychologists but I don’t feel like any of them have helped.

I’ve also tried a variety of medications and treatments including:

1. CBT/DBT/ACT
2. Wellbutrin/mirtazapine/Lithium/trileptal/Gabapentin
3. Talk therapy
4. Exercise
Glad to see you checking in Billy. I was a bit worried for you last time you posted.

I really wish someone could give you answers to what ails you.

Sometimes I have to bite my tongue when I go into a provider and just let them do thier own differential diagnosis rather than going into it with preconceived notions.

Good luck and I hope you get answers.

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Billymadison420
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Re: How to determine Good Sleep?

Post by Billymadison420 » Sun Nov 13, 2022 9:30 pm

lynninnj wrote:
Billymadison420 wrote:
Sun Nov 13, 2022 10:08 am
Julie wrote:
Sun Nov 13, 2022 9:54 am
Fingers crossed for a definitive and uiseful answer. Certainly something (besides just OSA) is happening, even if 'only' depression and you need help to deal with it.

Thanks Julie.

Sadly I’m almost positive that nothing physical will come back. I won’t get answers and I will be stuck disabled and without help. This sucks.

I know I’m depressed. But depression doesn’t cause disabling fatigue. I know this because I’ve had depression my whole life. It never caused this level of exhaustion to the point of having trouble supporting my own weight. Of wanting to sleep all day everyday. I’ve never experienced that.

This is either something neurological or some sort of conversion disorder caused by someone telling me I have narcolepsy. Either way I don’t know how to change it.

I’ve been seeing an army of psychologists but I don’t feel like any of them have helped.

I’ve also tried a variety of medications and treatments including:

1. CBT/DBT/ACT
2. Wellbutrin/mirtazapine/Lithium/trileptal/Gabapentin
3. Talk therapy
4. Exercise
Glad to see you checking in Billy. I was a bit worried for you last time you posted.

I really wish someone could give you answers to what ails you.

Sometimes I have to bite my tongue when I go into a provider and just let them do thier own differential diagnosis rather than going into it with preconceived notions.

Good luck and I hope you get answers.
Thanks Lynn! Either there is a neurological issue or I’m really coo-coo. Which is possible!


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Billymadison420
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Re: How to determine Good Sleep?

Post by Billymadison420 » Sun Nov 13, 2022 9:32 pm

Julie wrote:Good idea - not that you have ALS necessarily (don't know that it's genetic) but neuros have lots more ideas re e.g. your symptoms than a GP might. Let us know how it goes!
Oh for sure it’s not ALS. We got the genetic testing and it was random and not familial. So fortunately for me it’s not that.

But it could be anything else. Or just….severe depression/grieving my mom.


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Billymadison420
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Re: How to determine Good Sleep?

Post by Billymadison420 » Tue Nov 15, 2022 5:19 pm

Update:

I am barely making it through each day. Can't stay awake the whole day. I am kind of out of options. I have a neurology appointment. I talked to my NeuroPsycholgoist and he does feel that I have hypersomnia given my history. I will be going back to the original Pulmonologist that thinks I have N/IH. I have nothing to lose at this point. This isn't just insomnia. :|

lynninnj
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Re: How to determine Good Sleep?

Post by lynninnj » Tue Nov 15, 2022 9:00 pm

Billymadison420 wrote:
Tue Nov 15, 2022 5:19 pm
Update:

I am barely making it through each day. Can't stay awake the whole day. I am kind of out of options. I have a neurology appointment. I talked to my NeuroPsycholgoist and he does feel that I have hypersomnia given my history. I will be going back to the original Pulmonologist that thinks I have N/IH. I have nothing to lose at this point. This isn't just insomnia. :|
Good luck Billy. I hope you get answers soon!

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Billymadison420
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How to determine Good Sleep?

Post by Billymadison420 » Wed Nov 16, 2022 6:38 am

lynninnj wrote:
Tue Nov 15, 2022 9:00 pm
Billymadison420 wrote:
Tue Nov 15, 2022 5:19 pm
Update:

I am barely making it through each day. Can't stay awake the whole day. I am kind of out of options. I have a neurology appointment. I talked to my NeuroPsycholgoist and he does feel that I have hypersomnia given my history. I will be going back to the original Pulmonologist that thinks I have N/IH. I have nothing to lose at this point. This isn't just insomnia. :|
Good luck Billy. I hope you get answers soon!
Thank you Lynn! Hope you’re doing well ImageImageImage

Billymadison420
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Re: How to determine Good Sleep?

Post by Billymadison420 » Sun Nov 20, 2022 9:19 pm

Ok. I didn't breath last night for a whole minute. That is kind of terrifying. What can I do about that?

https://www.dropbox.com/s/rmw8nji37e8ra ... M.png?dl=0


As well during my transitional breaths that are being flagged as Centrals I am sometimes not breathing up to 30 seconds or more. It doesn't seem CPAP helps with that. Any thoughts?

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ozij
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Re: How to determine Good Sleep?

Post by ozij » Sun Nov 20, 2022 9:36 pm

Billymadison420 wrote:
Sun Nov 20, 2022 9:19 pm
Ok. I didn't breath last night for a whole minute. That is kind of terrifying. What can I do about that?

https://www.dropbox.com/s/rmw8nji37e8ra ... M.png?dl=0
Upload the full night's graphs.
Also, upload the statisitics screen so we can see you various pressure settings and how you responded to them in the long run.
As well during my transitional breaths that are being flagged as Centrals I am sometimes not breathing up to 30 seconds or more. It doesn't seem CPAP helps with that. Any thoughts?
What do you mean "CPAP helps with that?" CPAP can do nothing helpful about anything when your breathing is not the regular breathing of sleep. Transitions are not the regular breathing of sleep.

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Billymadison420
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Re: How to determine Good Sleep?

Post by Billymadison420 » Mon Nov 21, 2022 7:23 am

ozij wrote:
Sun Nov 20, 2022 9:36 pm
What do you mean "CPAP helps with that?" CPAP can do nothing helpful about anything when your breathing is not the regular breathing of sleep. Transitions are not the regular breathing of sleep.
Hi Ozij!

https://sleephq.com/public/b279e06c-77a ... f0b207464a

That's the link to last nights sleep.

As you can probably see. Trainwreck sleep like most nights. Despite the fact I feel always asleep and am never conscious of being awake. Dark room. White noise machine. Comfortable blankets.

My question about the S/W breathing (flagged as CA's) is: Despite them being "Normal" shall we say, I am still stopping breathing for quite some time. Isn't that still affecting my therapy. Isn't that still affecting sleep quality greatly? And more than that I still seem to have Obstructive Apneas that can seem to happen for a minute or more. The CPAP doesn't seem to be able to get rid of those. Is this something a BIPAP could help with?

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robysue1
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Re: How to determine Good Sleep?

Post by robysue1 » Mon Nov 21, 2022 9:33 am

Billymadison420 wrote:
Mon Nov 21, 2022 7:23 am
ozij wrote:
Sun Nov 20, 2022 9:36 pm
What do you mean "CPAP helps with that?" CPAP can do nothing helpful about anything when your breathing is not the regular breathing of sleep. Transitions are not the regular breathing of sleep.
Hi Ozij!

https://sleephq.com/public/b279e06c-77a ... f0b207464a

That's the link to last nights sleep.

As you can probably see. Trainwreck sleep like most nights. Despite the fact I feel always asleep and am never conscious of being awake. Dark room. White noise machine. Comfortable blankets.
First of all, while your data is far from perfect, it's also not the train wreck you are making it out to be. (You want to see a real trainwreck? Look at some of the data GeneMpls has posted on his thread. His data really is a train wreck.]

I know you're going to think I'm being a Pollyanna, but sometimes it helps to look for positives rather than just the negatives in your data.

And here are some positives in your data and in what you've subjectively written:

1) The fact that you don't remember waking up is actually a positive. It means that the wakes you do have are short and that you are getting back to sleep in a timely fashion.

2) There are some stretches of normal sleep breathing that last for as long as 30 and 40 minutes between what might be arousals. And I stress the word might. Not every single breathing glitch is a wake/arousal. Sometimes REM breathing can look like wake breathing and sometimes such simple, natural things as turning over will be reflected in the flow rate curve as visible "glitches".

3) The data for the second half of the night looks like this:
Image

From 4:10 to 9:10, the data indicates that you had very few events which were mostly far apart. And if you zoom in, there is a lot of what looks like pretty decent normal sleep breathing during this 5 hour stretch. If the whole night looked like the second half, then "trainwreck" would not be the word you'd be using to describe the data.


That said, there is still a lot in this data that points to things you still need to be looking at in order to optimize your xPAP therapy and eliminate untreated OSA from the list of things that are causing your sleep problems and, in particular, your daytime symptoms of sleepiness and fatigue, which are two separate things.

So here's what I notice about the data that points to things to "work on" so to speak:

1) Leaks. Your leaks are never into the Large Leak zone (which Resmed defines as above 24 L/min), except for one super-big, but very short lived leak around 8:01. But you are leaking the whole night. Here's the whole leak line for the night:
Image
The fact that your leaks are always above 5 L/min and are often above 10 L/min begs the question: Are you fighting with pesky little leaks all night? And are the constant, but little leaks causing you to repeatedly arouse enough to try to fix those leaks? Significant numbers of spontaneous arousals that occur because you're fiddling with the mask attempting to get it to seal while you are in a very light sleep (or in a 30-60 second wake) do play havoc with the quality of your sleep. Does your leak line often look like this one? If so, then working on fixing the leaks should be a priority given that you subjectively feel like you are not getting sound, uninterrupted sleep even though you can't remember waking up in the night.

2) You probably need a bit more pressure to treat the obstructive stuff. Your worst 1.5 hour period for the night looks like this:
Image

Your pressure is maxed out during most of this hour. And just as important as the clusters of Hs and OAs is the fact that there is still a lot of flow limitation going on in and amongst those Hs and OAs. In other words, if your machine could have raised the pressure further near the start of this nasty period, it would have. And its possible that the additional pressure could have prevented most of these events from happening in the first place.

It looks like your Min Pressure is set to 9cm, but your median pressure is 10.84. So your pressure is pretty close to or above 11cm for 50% off the night. Your Max Pressure is set to 13cm, but that's clearly not enough to prevent the worst of the clusters from happening. Those two bits of data indicate you need to increase your pressures. Since rapid pressure increases can cause some people to arouse/wake, it might not be as simple as just setting Max Pressure = 20 to see where the machine wants to go during your worst clusters of events, including flow limitations. You might want to increase the min pressure as well so that the machine doesn't have to increase the pressure quite so far in an effort to prevent nasty clusters from occurring.

If aerophagia has not been an issue, I'd suggest using Min Pressure = 10.5 & Max Pressure = 15 for about 5 nights to see if it's possible to prevent the nasty cluster from developing. If aerophagia has been an issue, I'd increase both Min Pressure and Max Pressure by 0.2 cm each night until you get to a Min Pressure of somewhere around 11. And then keep increasing Max Pressure by 0.2 cm each night until those nasty clusters disappear.
My question about the S/W breathing (flagged as CA's) is: Despite them being "Normal" shall we say, I am still stopping breathing for quite some time. Isn't that still affecting my therapy. Isn't that still affecting sleep quality greatly?
If you are awake, the breathing when you are awake is not affecting your sleep quality. But the fact that you are awake can affect the sleep quality---numerous spontaneous arousals/micro-wakes create problems with sleep continuity, even if there are no long CAs flagged. At this point, I'd suggest that you not worry about the length of the CAs. It could easily be that you are holding your breath while attempting to fix a pesky, small leak that caused you to arouse. Fix the leaks, and you fix the arousals. Fix the arousals, and the CAs will likely dissappear.
And more than that I still seem to have Obstructive Apneas that can seem to happen for a minute or more. The CPAP doesn't seem to be able to get rid of those. Is this something a BIPAP could help with?
All xPAP machines, including BiPAPs, do not increase pressure during an obstructive apnea: They do not generate enough pressure (even at their maximum setting of 20-25 cm H2O) to force an obstructed airway to open. Rather, they rely on a person's body/brain to detect the apnea and arouse enough to open up the airway and restart the breathing. An auto-adjusting CPAP (like the AirSense 11 AutoSet) and an auto adjusting BiPAP (like the AirCurve 10 VAuto) increases the pressure after an OA ends in an effort to prevent more OAs from happening. But if the auto-adjusting machine is already at its maximum pressure (as yours was during the nasty cluster), the machine cannot increase the pressure any further even though it would like to increase the pressure further in an effort to prevent more OAs from occurring.

Unless you are dealing with something like aerophagia or it becomes clear that you need more than 20cm of pressure to prevent your OAs from happening in the first place, it's not clear that this kind of data would lead a sleep doc to prescribe a bi-level machine. So if you wanted to try a bi-level for comfort reasons, you would likely have to buy one from an individual instead of a DME because you won't have a script for a bi-level.
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Billymadison420
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Re: How to determine Good Sleep?

Post by Billymadison420 » Tue Nov 22, 2022 7:22 am

robysue1 wrote:
Mon Nov 21, 2022 9:33 am
Billymadison420 wrote:
Mon Nov 21, 2022 7:23 am
ozij wrote:
Sun Nov 20, 2022 9:36 pm
What do you mean "CPAP helps with that?" CPAP can do nothing helpful about anything when your breathing is not the regular breathing of sleep. Transitions are not the regular breathing of sleep.
Hi Ozij!

https://sleephq.com/public/b279e06c-77a ... f0b207464a

That's the link to last nights sleep.

As you can probably see. Trainwreck sleep like most nights. Despite the fact I feel always asleep and am never conscious of being awake. Dark room. White noise machine. Comfortable blankets.
First of all, while your data is far from perfect, it's also not the train wreck you are making it out to be. (You want to see a real trainwreck? Look at some of the data GeneMpls has posted on his thread. His data really is a train wreck.]

I know you're going to think I'm being a Pollyanna, but sometimes it helps to look for positives rather than just the negatives in your data.

And here are some positives in your data and in what you've subjectively written:

1) The fact that you don't remember waking up is actually a positive. It means that the wakes you do have are short and that you are getting back to sleep in a timely fashion.

2) There are some stretches of normal sleep breathing that last for as long as 30 and 40 minutes between what might be arousals. And I stress the word might. Not every single breathing glitch is a wake/arousal. Sometimes REM breathing can look like wake breathing and sometimes such simple, natural things as turning over will be reflected in the flow rate curve as visible "glitches".

3) The data for the second half of the night looks like this:
Image

From 4:10 to 9:10, the data indicates that you had very few events which were mostly far apart. And if you zoom in, there is a lot of what looks like pretty decent normal sleep breathing during this 5 hour stretch. If the whole night looked like the second half, then "trainwreck" would not be the word you'd be using to describe the data.


That said, there is still a lot in this data that points to things you still need to be looking at in order to optimize your xPAP therapy and eliminate untreated OSA from the list of things that are causing your sleep problems and, in particular, your daytime symptoms of sleepiness and fatigue, which are two separate things.

So here's what I notice about the data that points to things to "work on" so to speak:

1) Leaks. Your leaks are never into the Large Leak zone (which Resmed defines as above 24 L/min), except for one super-big, but very short lived leak around 8:01. But you are leaking the whole night. Here's the whole leak line for the night:
Image
The fact that your leaks are always above 5 L/min and are often above 10 L/min begs the question: Are you fighting with pesky little leaks all night? And are the constant, but little leaks causing you to repeatedly arouse enough to try to fix those leaks? Significant numbers of spontaneous arousals that occur because you're fiddling with the mask attempting to get it to seal while you are in a very light sleep (or in a 30-60 second wake) do play havoc with the quality of your sleep. Does your leak line often look like this one? If so, then working on fixing the leaks should be a priority given that you subjectively feel like you are not getting sound, uninterrupted sleep even though you can't remember waking up in the night.

2) You probably need a bit more pressure to treat the obstructive stuff. Your worst 1.5 hour period for the night looks like this:
Image

Your pressure is maxed out during most of this hour. And just as important as the clusters of Hs and OAs is the fact that there is still a lot of flow limitation going on in and amongst those Hs and OAs. In other words, if your machine could have raised the pressure further near the start of this nasty period, it would have. And its possible that the additional pressure could have prevented most of these events from happening in the first place.

It looks like your Min Pressure is set to 9cm, but your median pressure is 10.84. So your pressure is pretty close to or above 11cm for 50% off the night. Your Max Pressure is set to 13cm, but that's clearly not enough to prevent the worst of the clusters from happening. Those two bits of data indicate you need to increase your pressures. Since rapid pressure increases can cause some people to arouse/wake, it might not be as simple as just setting Max Pressure = 20 to see where the machine wants to go during your worst clusters of events, including flow limitations. You might want to increase the min pressure as well so that the machine doesn't have to increase the pressure quite so far in an effort to prevent nasty clusters from occurring.

If aerophagia has not been an issue, I'd suggest using Min Pressure = 10.5 & Max Pressure = 15 for about 5 nights to see if it's possible to prevent the nasty cluster from developing. If aerophagia has been an issue, I'd increase both Min Pressure and Max Pressure by 0.2 cm each night until you get to a Min Pressure of somewhere around 11. And then keep increasing Max Pressure by 0.2 cm each night until those nasty clusters disappear.
My question about the S/W breathing (flagged as CA's) is: Despite them being "Normal" shall we say, I am still stopping breathing for quite some time. Isn't that still affecting my therapy. Isn't that still affecting sleep quality greatly?
If you are awake, the breathing when you are awake is not affecting your sleep quality. But the fact that you are awake can affect the sleep quality---numerous spontaneous arousals/micro-wakes create problems with sleep continuity, even if there are no long CAs flagged. At this point, I'd suggest that you not worry about the length of the CAs. It could easily be that you are holding your breath while attempting to fix a pesky, small leak that caused you to arouse. Fix the leaks, and you fix the arousals. Fix the arousals, and the CAs will likely dissappear.
And more than that I still seem to have Obstructive Apneas that can seem to happen for a minute or more. The CPAP doesn't seem to be able to get rid of those. Is this something a BIPAP could help with?
All xPAP machines, including BiPAPs, do not increase pressure during an obstructive apnea: They do not generate enough pressure (even at their maximum setting of 20-25 cm H2O) to force an obstructed airway to open. Rather, they rely on a person's body/brain to detect the apnea and arouse enough to open up the airway and restart the breathing. An auto-adjusting CPAP (like the AirSense 11 AutoSet) and an auto adjusting BiPAP (like the AirCurve 10 VAuto) increases the pressure after an OA ends in an effort to prevent more OAs from happening. But if the auto-adjusting machine is already at its maximum pressure (as yours was during the nasty cluster), the machine cannot increase the pressure any further even though it would like to increase the pressure further in an effort to prevent more OAs from occurring.

Unless you are dealing with something like aerophagia or it becomes clear that you need more than 20cm of pressure to prevent your OAs from happening in the first place, it's not clear that this kind of data would lead a sleep doc to prescribe a bi-level machine. So if you wanted to try a bi-level for comfort reasons, you would likely have to buy one from an individual instead of a DME because you won't have a script for a bi-level.
First of all. I am extremely grateful for your detailed and time-consuming analysis. You didn't have you do all of that and you did. I am extremely grateful for that. Thank you!

Second of all I took your advice, and some advice elsewhere and combined it last night. From you, I took the raising of the max pressures to 16 and set the response to be a bit more aggressive. That seemed to work! I also lowered my EPR to 1. I saw elsewhere that could possibly help with central, but it sounds like you were saying my central weren't true central.

As far as the leaks are concerned I am not quite sure what to do there. I may have to trim my beard (as I am using a full facemask now).

My data look s pretty good. Thats healthy and the good news. The bad is I still feel like garbage.

https://sleephq.com/public/8b4db213-2f7 ... ca69a47291

I am seeing a psychiatrist this week from University of Pennsylvania. She has been instructed to meet with me on the suggestion of the pulmonologist that feels that I have hypersomnia or narcolepsy. He is considering on starting xywav for me soon. Before he does that, he wants me to have an analysis done by this psychiatrist, who also does sleep medicine. He still feels pretty strongly about his diagnosis, but it's willing to consider that he may be wrong and if we do treat me with these medicines and they don't help that perhaps for treating the wrong thing. In other words, I think they are considering the possibility that some of you have here that there is a deeply psychological component.

I am still having the same symptoms of endless lucid dreaming every night. Sleep, that is not refreshing. Daytime, fatigue, and sleepiness, as you noted. Muscle, fatigue, and soreness, lethargy, dizziness. I've been completely cleared by my primary care doctor for most other things. And like I mentioned, I know I have two separate university sleep, clinicians who do not believe that I have Narcolepsy or hypersomnia.

My personal belief, still, is that there is an underlying issue. I have had long sleep times, since I was a child, as well as frequent napping, and an inability to keep up with other people in life as far as energy is concerned. It is certainly worse now than it was one year or even two years ago and I cannot account for why that is. The Sleepiness and fatigue is debilitating and I am considering going on short-term disability, short of a miracle. I usually wake up somewhat OK and have energy for a couple hours in the morning to degree. Between 12 and 5 PM. It goes off a cliff. I cannot resist a nap. And if I don't nap. I have to lie down. I literally have no energy at that time. I worry about driving. I worry about a lot of things.

lynninnj
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Re: How to determine Good Sleep?

Post by lynninnj » Tue Nov 22, 2022 8:59 pm

Billy, I hope that your sleep continues in such a positive direction and you find relief soon as far as a proper diagnosis.

Take care of yourself and keep us posted.

_________________
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Additional Comments: Newbie who loves her machine!
Beware the schoolyard bullies, mean girls, and fragile male egos. Move along if you can’t be kind.

Billymadison420
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Re: How to determine Good Sleep?

Post by Billymadison420 » Tue Nov 22, 2022 9:17 pm

lynninnj wrote:
Tue Nov 22, 2022 8:59 pm
Billy, I hope that your sleep continues in such a positive direction and you find relief soon as far as a proper diagnosis.

Take care of yourself and keep us posted.


Thank you Lynne! I’m grateful to all the wonderful people here. How are you? I hope you have a wonderful Thanksgiving.

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Re: How to determine Good Sleep?

Post by lynninnj » Tue Nov 22, 2022 9:39 pm

Billymadison420 wrote:
Tue Nov 22, 2022 9:17 pm
lynninnj wrote:
Tue Nov 22, 2022 8:59 pm
Billy, I hope that your sleep continues in such a positive direction and you find relief soon as far as a proper diagnosis.

Take care of yourself and keep us posted.


Thank you Lynn! I’m grateful to all the wonderful people here. How are you? I hope you have a wonderful Thanksgiving.
Doing well enough, thanks! Looking forward to a few quick nights out of town on the long weekend. I hope you enjoy your holiday as well!

(Lynn no E- I edited that out of your post. lol)

_________________
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Beware the schoolyard bullies, mean girls, and fragile male egos. Move along if you can’t be kind.

Billymadison420
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Re: How to determine Good Sleep?

Post by Billymadison420 » Thu Nov 24, 2022 4:39 pm

Well. I’m making the decision to apply for disability. Sadly I do not have the energy to even take care of myself. Let alone work my 40 hour a week job. I can’t understand how an army of sleep medicine doctors and psychologists can’t help me. It’s shocking. In a short 2 years I have become effectively disabled.

It’s devastating. At 35 I am disabled. There was so much I wanted to do with my life.