New CPAP user pretty desperate for help

DANQ725 · Post by **DANQ725** » Mon Mar 08, 2021 9:03 pm

New to the forum and new to CPAP. I will list below my personal characteristics, initial symptoms, and reason why I'm here.

- Male, 28, 170lb, slender build
- 2 years of symptoms, multiple sleep studies, and every blood test you can think of
- Taking Welbutrin (minor depression), Pantoprazole (GERD), and Magnesium & Iron (slightly anemic)
- Moderate to severe daytime sleepiness, fatigue, muscle weakness, mental confusion, lack of focus, lack of motivation
- Mild to moderate morning headaches
- Low libido and weight gain

I'm hoping someone can enlighten me as to why I still feel like crap. I need to find an answer because I just want to feel myself again. I used to be a high energy, happy, healthy, and motivated young man. I was making great progress in my career (Manufacturing Engineer) while being able to maintain a healthy home and social life. I was remodeling my house or running 6 miles with the dogs on a rotating every other day schedule. I was even taking steps toward starting my own business and racing my motorcycle on occasional weekends. I would get 6-7 hours of sleep, wake up recharged, and be ready to do it again.

When I first started to notice something was wrong was when I would have a really rough time waking up. Then I would occasionally have days where I was really tired at work. Eventually it got to the point where I was totally spent by the time I got home from work. I would sit down until I was forced to feed the dogs and myself then go to bed. I also started losing motivation, mental clarity, and creativity. I used to be so active and now it was hard to take care of my dogs and that hurt because were the most important part of my life. I started seeing doctors at this point.

I started a new job after a few months after this and it was only getting worse. Now, however, I was working longer hours and with a commute.

A few months ago was the worst point I have ever felt. I would set 18 morning alarms, wake up at 5am exhausted/confused (sometimes with a headache) and really dragging myself around. I was so fatigued that once I started my hour long drive to work that my arms felt heavy and I occasionally struggled to stay awake. I would stay fatigued all morning until about 10am or 11am when it was nearly impossible to stay on my feet. I would have to sit down and it felt like I was being sucked into the chair by something like a vacuum or a magnet. My eyes would get heavy and then it would be lights out. I would wake about 10-20mins later. It would take hours for the physical fatigue to subside to the point where I could get up and start doing my rounds on the production line. I would drag my feet for the remainder of the day until it was time to go home. Mentally and physically exhausted I would go home. Arms heavy, eyes heavy, and totally spent I would make it home. Some days I was so exhausted I would just go straight to bed. Luckily at this point my girlfriend started cooking dinner practically every night and walking the dogs. I couldn't do it.

A few months ago I got my second sleep study. I have mild/moderate sleep apnea. 20 instances per hour. My MSLT came back normal. (the first sleep study only came back with idiopathic hypersomnia)

During the initial 2 week "calibration" (4-20 ramp) with my CPAP I notice no improvement in any of the symptoms. The machine readjusted to a minimum pressure of 6. Another few weeks went by and I only notice a slight improvement. Last week was the first week I didn't fall asleep at my desk in the past 1.5 years. I had a couple good days where I felt about 60% to normal. However, Saturday I was exhausted all day. So tired, in fact, that I went to bed early, woke up for a couple hours, then went back to bed. I was exhausted all Sunday as well but was out with the girlfriend
so I couldn't lay down or take a nap. This was better, but nothing to write home about. This evening I actually felt good. Good enough that I excitedly took the dogs out. I haven't "wanted" to take them out in a year.

I'm hoping someone could weigh in to give me advice. It seems like I may be making progress, but I'm reluctant to get my hopes up. How do my charts look? Is there anything I should be doing differently? How long did it take you to feel better after starting CPAP?

I'm going to include OSCAR screenshots from the past week because I know that's the first thing I should provide to this forum. Is there anything else that I should provide? If any would find a more detailed account of the past few years in terms of symptoms, progression (or regression depending on how you want to look at it), or doctors/treatments, please let me know.

Pugsy · Post by **Pugsy** » Mon Mar 08, 2021 9:47 pm

Look up the side effects to Welbutrin for one thing. It is well known to mess with sleep and sleep stages and make people feel like crap during the day.

Any other meds?

Do you wake up very any times during the night or sleep soundly for the most part.

Any other physical or mental health conditions going on?

DANQ725 · Post by **DANQ725** » Tue Mar 09, 2021 6:33 am

Pugsy wrote: ↑
Mon Mar 08, 2021 9:47 pm
Look up the side effects to Welbutrin for one thing. It is well known to mess with sleep and sleep stages and make people feel like crap during the day.

Any other meds?

Do you wake up very any times during the night or sleep soundly for the most part.

Any other physical or mental health conditions going on?

Luckily I don't believe I experience any side effects. At first I may have experienced lighter sleep, but now I sleep soundly.

I used to toss and turn a lot at night. I could never wake up with the sheets still on the bed. Ever since I started CPAP I'm less restless, and sleep well.

I forgot to mention that the doctor said I have low testosterone. They started me on testosterone replacement therapy, but I don't believe this is true, so I plan on stopping this as soon as I can.

No other physical or mental conditions.

P.S. I will add the remaining screenshots from the week when I get home.

Julie · Post by **Julie** » Tue Mar 09, 2021 7:00 am

I hope you're not stopping the T because you feel embarrassed (even to yourself) tho' the doctor thinks you need it. Do you have side effects from it?

Pugsy · Post by **Pugsy** » Tue Mar 09, 2021 7:59 am

https://www.healthline.com/health/side- ... al-changes

Sleep disturbances

Low testosterone can cause lower energy levels, insomnia and other changes in your sleep patterns.

Testosterone replacement therapy may contribute to or cause sleep apnea. Sleep apnea is a serious medical condition that causes your breathing to stop and start repeatedly while you sleep. It can disrupt your sleep pattern in the process and raise your risk for other complications, like having a stroke.

On the other hand, changes in the body that occur as a result of sleep apnea can lead to low testosterone levelsTrusted Source.

Even if you don’t have sleep apnea, low testosterone can still contribute to a decrease in the hours of sleep. Researchers aren’t yet sure why this happens.

Don't assume Welbutrin is entirely innocent...your body can change.

Finally, your unwanted symptoms may or may not be related to your airway or sleep apnea issues. It happens often that people have unwanted symptoms that could be from sleep apnea and they expect the cpap machine to fix everything but in reality maybe the unwanted symptoms are from something else and the cpap machine can only fix airway related problems.

Pugsy · Post by **Pugsy** » Tue Mar 09, 2021 8:35 am

Where are you located?
How long have you been using this new model machine at fixed pressures?
What brand was your trial with auto adjusting machine?

DANQ725 · Post by **DANQ725** » Tue Mar 09, 2021 9:49 am

Julie wrote: ↑
Tue Mar 09, 2021 7:00 am
I hope you're not stopping the T because you feel embarrassed (even to yourself) tho' the doctor thinks you need it. Do you have side effects from it?

Not embarrassed by any means. I just don't believe I truly need it. My blood test was in the low normal range, but testosterone is highly effected by sleep quality and physical exercise, which both were very poor at the time. I'm hoping if I fix my sleep problems I can finally have the energy and willpower to exercise again.

DANQ725 · Post by **DANQ725** » Tue Mar 09, 2021 9:58 am

Pugsy wrote: ↑
Tue Mar 09, 2021 7:59 am
https://www.healthline.com/health/side- ... al-changes

Sleep disturbances

Low testosterone can cause lower energy levels, insomnia and other changes in your sleep patterns.

Testosterone replacement therapy may contribute to or cause sleep apnea. Sleep apnea is a serious medical condition that causes your breathing to stop and start repeatedly while you sleep. It can disrupt your sleep pattern in the process and raise your risk for other complications, like having a stroke.

On the other hand, changes in the body that occur as a result of sleep apnea can lead to low testosterone levelsTrusted Source.

Even if you don’t have sleep apnea, low testosterone can still contribute to a decrease in the hours of sleep. Researchers aren’t yet sure why this happens.
Don't assume Welbutrin is entirely innocent...your body can change.

Finally, your unwanted symptoms may or may not be related to your airway or sleep apnea issues. It happens often that people have unwanted symptoms that could be from sleep apnea and they expect the cpap machine to fix everything but in reality maybe the unwanted symptoms are from something else and the cpap machine can only fix airway related problems.

That's exactly why I wasn't convinced my testosterone was the problem. It's a double edged sword, and I really believe my lack of sleep and deteriorating exercise routine was the cause of me testing low (but still in the normal ranges).

I should mention that I was on Wellbutrin for two months before I started CPAP, but quit taking it because I felt no different other than being dehydrated all the time. It's like it just sucked the water right out of me. I just started taking it again about three weeks ago and I have been more active, so I believe it has been helping, but ideally I wouldn't have to take any medication at all, so my end goal is to stop taking it.

I understand exactly what you are saying. I know there could be underlying conditions, but I just didn't know if what I'm still experiencing is normal.

DANQ725 · Post by **DANQ725** » Tue Mar 09, 2021 10:04 am

Pugsy wrote: ↑
Tue Mar 09, 2021 8:35 am
Where are you located?
How long have you been using this new model machine at fixed pressures?
What brand was your trial with auto adjusting machine?

I'm located in Maryland.

I took my sleep study early January, got my CPAP about two weeks later. Two weeks after that (once the two week calibration ended), was when it switched to fixed 6.

I'm not entirely sure what you mean by "what brand." I have been using the same machine this entire time if that answers your question. If not you can blame my ignorance.

Pugsy · Post by **Pugsy** » Tue Mar 09, 2021 10:42 am

DANQ725 wrote: ↑
Tue Mar 09, 2021 10:04 am
I'm not entirely sure what you mean by "what brand." I have been using the same machine this entire time if that answers your question. If not you can blame my ignorance.

You mentioned initial trial with a range of pressures and then they decided to do fixed pressures based on the results of the auto mode range trial.
I didn't know if you used this same machine or a different brand for the auto adjusting range.
If this is the same machine they just used the limited auto adjusting mode available with the DreamStation Pro model machine.

If it had been a different brand then the pressures reached might have been unequal because different brands have different auto adjusting algorithms. I wanted to rule out that potential issue. It's common for a person to have different pressure needs because of different algorithms.

I am not sure that machine setting tweaking is going to fix your problem....but it is something worth looking at.
A problem with the fixed pressure mode with Respironics machines is they don't bother to flag flow limitations in fixed mode.
Stupid idea IMHO because flow limitations are early warning signs that the airway is trying to collapse and in fact in auto mode the machine will increase the pressure trying to kill FLs...so they are very important but in fixed mode Respironics won't even tell us if you are having FLs or not.

Since this is the same machine...there should be data available to review back when it was in auto trial mode.
Can you see it?
Need to know how many FLs you might have had in auto mode and why they decided 6 cm was your best fixed option.
FLs can impact sleep quality....long shot that they are a potential factor in your unwanted symptoms but I always turn over every rock possible when looking for solutions to problems....no matter how small a rock it might be.

DANQ725 · Post by **DANQ725** » Tue Mar 09, 2021 11:57 am

Pugsy wrote: ↑
Tue Mar 09, 2021 10:42 am

DANQ725 wrote: ↑
Tue Mar 09, 2021 10:04 am
I'm not entirely sure what you mean by "what brand." I have been using the same machine this entire time if that answers your question. If not you can blame my ignorance.
You mentioned initial trial with a range of pressures and then they decided to do fixed pressures based on the results of the auto mode range trial.
I didn't know if you used this same machine or a different brand for the auto adjusting range.
If this is the same machine they just used the limited auto adjusting mode available with the DreamStation Pro model machine.

If it had been a different brand then the pressures reached might have been unequal because different brands have different auto adjusting algorithms. I wanted to rule out that potential issue. It's common for a person to have different pressure needs because of different algorithms.

I am not sure that machine setting tweaking is going to fix your problem....but it is something worth looking at.
A problem with the fixed pressure mode with Respironics machines is they don't bother to flag flow limitations in fixed mode.
Stupid idea IMHO because flow limitations are early warning signs that the airway is trying to collapse and in fact in auto mode the machine will increase the pressure trying to kill FLs...so they are very important but in fixed mode Respironics won't even tell us if you are having FLs or not.

Since this is the same machine...there should be data available to review back when it was in auto trial mode.
Can you see it?
Need to know how many FLs you might have had in auto mode and why they decided 6 cm was your best fixed option.
FLs can impact sleep quality....long shot that they are a potential factor in your unwanted symptoms but I always turn over every rock possible when looking for solutions to problems....no matter how small a rock it might be.

Ok. Im following what you're saying now. Im not sure why my machine was switched to fixed, but I will be sure to ask. I have a follow up scheduled for next Wednesday, so maybe they will enlighten me. Im not looking to tweak settings until the doctor tells me exactly what his plan is, and why. Im reluctant to put my faith in any doctor at this point and that is another reason why I was reaching out here to get first hand experience.

I have every bit of data since I first started using the machine, so I can definitely provide that. I will edit this comment when I get home and add that information. I will also edit my previous comment with the remainder of last week that I neglected to add.

Im willing to flip every rock I can find.

zonker · Post by **zonker** » Tue Mar 09, 2021 2:06 pm

DANQ725 wrote: ↑
Tue Mar 09, 2021 11:57 am

Im willing to flip every rock I can find.

i predict that you will soon be on top of your therapy, with an attitude like that!

DANQ725 · Post by **DANQ725** » Wed Mar 10, 2021 8:33 am

DANQ725 · Post by **DANQ725** » Wed Mar 10, 2021 8:34 am

DANQ725 wrote: ↑
Wed Mar 10, 2021 8:33 am
.

DANQ725 · Post by **DANQ725** » Wed Mar 10, 2021 8:40 am

DANQ725 wrote: ↑
Wed Mar 10, 2021 8:34 am

DANQ725 wrote: ↑
Wed Mar 10, 2021 8:33 am
.

New CPAP user pretty desperate for help

New CPAP user pretty desperate for help

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Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help

Re: New CPAP user pretty desperate for help