Newbie asking for advice

[strawberryfields]

Hello everyone, I'm new here and also new to cpap. I've been reading through the forum a bit during the last days and thought I'd make a post myself
I've been diagnosed with sleep apnea via a home sleep study in January (this year), but hadn't been prescribed a cpap yet. I have an appointment for another in lab sleep study end of this month, but the doctor said clearly that he wouldn't prescribe me a cpap then (yet), because for that I would need another appointment (don't really understand why it is so complicated, but yeah), which would mean more months waiting time. Because my symptoms are very severe (gonna say more about that below) and I simply could not stand the waiting time anymore, I bought an apap on my own. I've been sleeping with it for 3 nights now, slowly getting used to the mask. The first two nights I set the min pressure at 5 and the max at 20, and having the auto ramp on. Last night I set the min pressure to 7 to see what happens.
So far I notice no improvement in my symptoms (except for one) which are the following:
extreme brain fog (unable to focus more than few minutes, difficulty holding conversations, feeling of getting more and more stupid), dizzyness, extreme weakness, weight gain, edema, tachycardia, pain, extreme fatigue/tiredness, extreme exhaustion, depression.
I also have diabetes which I developed within a very short time, my guess is that it happened after the sleep apnea manifested, but it's impossible to know now. My blood sugar numbers have improved in these 3 days I've used the apap.

Now my questions: Does it (just) take time until I can see some improvements in how I am feeling? My AHI has been good all 3 days. I wonder if it would make sense to still try different minimum pressures or if I should just leave it as it is and wait some weeks? Does anyhthing look wrong in my data? I will also ask my doctor at the end of the month, but was wondering what I can do for now.
Thanks!
Here is my data from last night:

Screenshot (4).png (90.79 KiB) Viewed 4213 times

sleepyhead 7th march (2).png (101.21 KiB) Viewed 4213 times

[Pugsy]

Welcome to the forum.

Yes...most of the time the improvements we want to see do take time to show up. A few lucky people get an immediate overnight miracle but those people are in a minority.

If you broke your ankle and put a cast on it....would you expect it to be healed up and normal the next day?

Do you take any medications of any kind? If so, what?

[bonjour]

Your obstructive events are essentially non-existent,
I would set your Min and Max at 4, and assuming that you do not feel starved for air try that overnight, 1 night only to see if more obstructive events show up.
The best we can determine from your machine is that you are well treated at 4 cmw, the lowest setting on your CPAP and that is the reason for the low setting. If you had a sleep study that said you had OSA I would not go there.

I do see some flow limitations that could be minimized but let's see if you actually need a CPAP in the first place, thus I believe is why Pugsy is asking.

[Pugsy]

Your obstructive events are essentially non-existent,
I would set your Min and Max at 4, and assuming that you do not feel starved for air try that overnight, 1 night only to see if more obstructive events show up.
The best we can determine from your machine is that you are well treated at 4 cmw, the lowest setting on your CPAP and that is the reason for the low setting. If you had a sleep study that said you had OSA I would not go there.

I do see some flow limitations that could be minimized but let's see if you actually need a CPAP in the first place, thus I believe is why Pugsy is asking.

His pressure line shows the machine is wanting to fight something...it doesn't stay at 4 very long...it quickly goes to 7 and never goes back down below 7 the entire night. It's wanting to kill something.... We don't have any way of knowing how many OAs or whatever got prevented...it is clear that Flow Limitations are a probable driving force but it may not have been the only force.

I am not sure that I get what you are saying here but it sounds like you don't think he has OSA or that if he does 4 cm does a good job...and I don't think I have nearly enough information to go down that road from just this one report.

The meds question is my usual one when people are complaining of a truck load of symptoms that may or may not be fully related to sleep apnea.
Next question would be nasal congestion question...see if we can blame any of that ugly FL graph on nasal issues.

[bonjour]

I don't disagree Pugsy, I saw his symptom list and I wondered if Meds could be contributing, but with the lack of any sleep study, I would love to see Obstructive events to be able to say yes those were being treated and you are definitely heading down the right path. Then proceed to clear up the issues we both see.

[Pugsy]

I don't disagree Pugsy, I saw his symptom list and I wondered if Meds could be contributing, but with the lack of any sleep study, I would love to see Obstructive events to be able to say yes those were being treated and you are definitely heading down the right path. Then proceed to clear up the issues we both see.

Oh... but he had a home sleep study and has another appointment in a sleep lab for another sleep study...but hasn't been told much.
Something showed up on the home sleep study to earn him/her an in lab sleep study. So there's definitely something going on besides just medication side effects.

Hey...strawberry....are you by chance in the UK or somewhere outside the USA?

[strawberryfields]

Thanks for your replys Pugsy and bonjour!
As for meds, I take metformin and januvia for the diabetes and a small dose of trimipramine before sleeping to fall asleep (have trouble with that). I had all symptoms prior to taking any medication though.
The pressure of 4 is just my starting point for the auto ramp, I think I've still been awake during the time where the graph is at 4.
I definitely do have nasal congestion. I still can breathe through my nose, just not 100% if that makes sense, which is why I got a full face mask. I've been wanting to see a doctor about tha nasal congestion soon.
I live in Germany.

[bonjour]

Well Kathi, ignore my recommendation for 4 min and max as I missed your home sleep study. You are heading down the right path and have purchased what in my humble Opinion is the Best in class of the APAPs.

[raisedfist]

You did a great job setting up your machine...data looks good. You could raise the min to 8 to see if those flow limitations reduce. Recovery takes time.

[strawberryfields]

Thanks bonjour and raisedfist!
I'm gonna try raising the min to 8 and see if something happens with the flow limitations.

[Pugsy]

Some of the ugliness on the flow limitation graph could very well be related to nasal congestion...more minimum pressure is unlikely to fix that but you could try. The machine will certainly try. It doesn't know why the air flow is reduced....airway or the nose so it just tried to fix it with more pressure.

It sounds like you have potentially several issues going on and they may not all be related to sleep apnea and you need to remember that cpap only fixes sleep apnea or sleep disordered breathing problems.
We have to start somewhere though...fix what you know can be fixed with cpap and go from there.

FWIW....It took me probably 3 months to notice much change in daytime energy levels when I started cpap.
I had a couple of symptoms that went away the first month....nocturia and killer morning headaches...but the rest of my symptoms didn't go away over night....it was instead a very gradual reduction that took place over months.

You didn't get this way overnight...and it's really unrealistic to expect to fix it overnight. Sorry, I know that isn't what you wanted to hear.

[palerider]

Your obstructive events are "essentially non-existent",

They're actually completely non-existent because the machine is working!

I would set your Min and Max at 4,

This is what we over here like to call BAD ADVICE

I do see some flow limitations that could be minimized but let's see if you actually need a CPAP in the first place,

No, let's not. That's a LOT of flow limitations.

[palerider]

Thanks bonjour and raisedfist!
I'm gonna try raising the min to 8 and see if something happens with the flow limitations.

I'm betting you're going to need more than that, since the FL's were pushing you up almost to 13. I'm guessing 10-12, but work your way up.

Also, please review wiki/index.php/Sleepyhead:Organize on how to format your SH charts.

[strawberryfields]

Thanks Pugsy and palerider!

Some of the ugliness on the flow limitation graph could very well be related to nasal congestion...more minimum pressure is unlikely to fix that but you could try. The machine will certainly try. It doesn't know why the air flow is reduced....airway or the nose so it just tried to fix it with more pressure.

It sounds like you have potentially several issues going on and they may not all be related to sleep apnea and you need to remember that cpap only fixes sleep apnea or sleep disordered breathing problems.
We have to start somewhere though...fix what you know can be fixed with cpap and go from there.

FWIW....It took me probably 3 months to notice much change in daytime energy levels when I started cpap.
I had a couple of symptoms that went away the first month....nocturia and killer morning headaches...but the rest of my symptoms didn't go away over night....it was instead a very gradual reduction that took place over months.

You didn't get this way overnight...and it's really unrealistic to expect to fix it overnight. Sorry, I know that isn't what you wanted to hear.

I'll try to do something against the nasal congestion and see if it helps.. I found a nasal spray that is not addicting, will get it on Monday and try it out. And also make an appointment with the doctor to check if I have any allergies..
Thank you for sharing how long it took you to feel better.
It makes sense that it's not fixed overnight and I feel like having more realistic expections will help not being too disappointed with how long it will take to feel an improvement.

I'm betting you're going to need more than that, since the FL's were pushing you up almost to 13. I'm guessing 10-12, but work your way up.

Also, please review wiki/index.php/Sleepyhead:Organize on how to format your SH charts.

Thank you. I'll try to get rid of my nasal congestion and then work my way up the pressure, if still necessary. Also, thanks for the link!

[strawberryfields]

Posting an update.
Changes I did during the last weeks: gradually increased my min pressure to 12, tried out a nose spray against the congestion, tried out a different mask (it didn't work for me, so I stick with this full face mask), turned on EPR.
I also had my in lab sleep study, but the doctor for some reason doesn't want to treat me, so I am on my own for now and will look for a new sleep doc. I will ask for a copy of my results next week.

Here's my graph from last night:

screenshot-20190324-143344.png (89.52 KiB) Viewed 4006 times

Flow limitations went down with nose spray. Pressure is more steady at 12. I feel like I wake up less often at night. Not feeling more rested during the day yet, still brain fogged and tired and feeling garbage overall. Wondering if I should leave my settings as they are now and just wait and see if I see any improvements during the day?