Newbie asking for advice

I don't know how much your medication side effects might be playing a part in your continued unwanted symptoms but it is possible they are impacting things a bit.

trimipramine side effect...google and read up on it and how it might impact sleep quality and read from multiple sources
here's just one source
https://en.wikipedia.org/wiki/Trimipramine

https://www.rxlist.com/januvia-side-eff ... center.htm

https://www.rxlist.com/consumer_metform ... dition.htm

I wish I could spot something on the report that I could suggest a change in a setting that might help but you look pretty darn good on paper. I wouldn't change anything.

strawberryfields wrote: ↑

Sun Mar 24, 2019 7:51 am

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?

I'm not a doctor but I have gotten my diabetes under control with the help of Januvia and Metformin. Since you are taking both Januvia and Metformin I am going to guess that your sugar was fairly high before treatment.
Generally speaking most people feel like heck while their blood sugar is coming down to reasonable levels.
Even though Januvia gave me a runny nose for months I think its great and am considering going back on it even though my sugar is at normal levels without it.

strawberryfields wrote: ↑

Sun Mar 24, 2019 7:51 am

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?

i'm a cautious soul, myself, so i usually make gradual changes. some are adventurous souls and try to do a big jump in pressure.

you are doing pretty well, in my humble opinion. while it may seem like it's been a long time, it really hasn't. for a rare few, they get the AH-HA! moment early on and everything just continues to come up roses. but for the majority, it takes some time until you start to feel better. and it's subtle when it comes.

i wish i could tell you "why, you'll be fine in XX number of days!". if i could do THAT, think of the money i could make!

so, if it were me, i'd leave it alone and let's see what you look like in a week.

good luck!

Thanks Pugsy, Jack and zonker!
I looked up the side effect lists of all three medications.. some of the side effects sound indeed like some symptoms, like nausea, weight gain etc. But as far as I remember this started before I took any medication at all? I have to take the trimipramine for insomnia. Without it I would lay awake for hours and hours.. with it only for 20-60 minutes max. And the blood sugar medication, I hope I will be able to taper off it a bit when my blood sugar is better. My blood sugar levels have already improved a bit since using the apap so I believe this is a good sign. I'm taking both januvia and metformin because they have opposite side effects on digestion and I couldn't handle either on its own. It's both not a very high dose.
zonker, you're right, it hasn't been a long time yet. I think I am a little impatient

Something I did out of curiosity, was to zoom in on my graph and I discovered that, especially in the early morning hours, I seem to have some, well, not events, but it looks like an obstructive apnea except it's not long enough (less than 10 seconds). Else it's the same pattern, it just looks smaller. The machine doesn't react to those with an increase of pressure. They happen 2-3 times an hour and start at about 4 am. Should I worry about those or is this normal? They look like this:

The machine won't necessarily react to a single reduction in air flow which might explain why you don't see much of a pressure change with those short lived flow reductions. It takes more than a single warning sign of airway collapse to trigger the auto adjusting algorithm into increasing. Spread out over an hour they just aren't close enough together.

Are they important? I don't know. I doubt it though unless they cause an arousal and I don't see it in the one example you posted.

It's been a month since I last posted. I kept my min pressure at 12 for 2 weeks and then increased to 13 because I still didn't feel any better. At 13 I don't feel better either. AHI always under 1. I tried sleeping with a soft neck brace, which resulted in many wake ups because I found it to be quite uncomfortable. In the 2 months so far using apap I had about 2-3 days where I felt slightly better with lower pulse, lower blood sugar, slightly less exhaustion/fatigue. I tried figuring out what it was that helped, but it feels like it was random. I am so desperate to feel better and I wonder what I can still do to make the apap work better for me. I have the feeling that I am not getting everything out of it.

Things I have been wondering:
1. My mouth often falls open during sleep, even if I breathe through my nose. Is this a problem even with FFM? Should I invest in a good chin strap (tried a cheap one but it didn't work for me)?
2. I have many arousals at night and very few OSA related events. I wonder how to reduce the arousals, also wondering if I might have UARS instead of OSA? Not sure if there is the possibility of getting UARS tested in my country, didn't find anything on google.

strawberryfields wrote: ↑

Wed May 01, 2019 7:19 am

I have many arousals at night and very few OSA related events. I wonder how to reduce the arousals,

Cpap/apap won't help arousals that are unrelated to breathing no matter how much we might want it to fix bad sleep.
The best therapy in the world can't fix bad sleep that is not caused by some sort of sleep disordered breathing issue.

Now figuring out what is causing the arousals and reducing them.....whole new ball game. Not easy to do at all.

Bad sleep....big long list of potential culprits and breathing related issues are but one of a mile long list.
cpap/apap can only fix one item on that long list.

strawberryfields wrote: ↑

Wed May 01, 2019 7:19 am

1. My mouth often falls open during sleep, even if I breathe through my nose. Is this a problem even with FFM? Should I invest in a good chin strap (tried a cheap one but it didn't work for me)?

this is fresh on my mind, because someone mentioned this product in another thread. you may want to try the Dr. Dakota device-

viewtopic/t172782/Success-with-Dr-Dakot ... evice.html

they seem to be found at amazon and walmart, i'm sure other places as well. i tried it, but didn't like it. i went back to my foam cervical collar. BUT i didn't like it because it wasn't like the cervical collar. seeing how you don't like the foam collar, maybe this will help??

good luck!

Thanks Pugsy and zonker for your replies and so sorry that I am writing so much later!

Pugsy wrote: ↑

Wed May 01, 2019 7:32 am

Cpap/apap won't help arousals that are unrelated to breathing no matter how much we might want it to fix bad sleep.
The best therapy in the world can't fix bad sleep that is not caused by some sort of sleep disordered breathing issue.

Now figuring out what is causing the arousals and reducing them.....whole new ball game. Not easy to do at all.

Bad sleep....big long list of potential culprits and breathing related issues are but one of a mile long list.
cpap/apap can only fix one item on that long list.

Thanks Pugsy!
I understand what you are saying. I do still want to try anything possible to get better, and I believe sleep disordered breathing is quite a big puzzle piece in my personal health mess (though not the only one).

zonker wrote: ↑

Wed May 01, 2019 11:18 am

this is fresh on my mind, because someone mentioned this product in another thread. you may want to try the Dr. Dakota device-

viewtopic/t172782/Success-with-Dr-Dakot ... evice.html

they seem to be found at amazon and walmart, i'm sure other places as well. i tried it, but didn't like it. i went back to my foam cervical collar. BUT i didn't like it because it wasn't like the cervical collar. seeing how you don't like the foam collar, maybe this will help??

good luck!

Thanks zonker!
After seeing your suggestion, I've been wanting to buy the Dr Dakota collar, but haven't been able to :/ They don't have it on German amazon and not having a credit card I am unable to order from US amazon sadly. I will keep my eyes open if I see anything similar here.



//
A bit of an update: since nothing seemed to help me sleep and feel better, I have bought a used bilevel machine to try. I only used it for 5-6 nights, and had to stop it because I felt a lot worse on it and my sleep was way more interrupted. I then went back to my normal Apap machine. Pressure range of 13.2-20 seems most comfortable, so I have been sticking with that. (I had been trying higher pressures, and even though I was able to sleep with them, I felt even groggier and overall worse the following days)

Also, I finally managed to get the results of my in lab sleep study. It turns out, my AHI was quite low in the study, and I had many arousals, like I thought. I am uploading the results and also writing some of the results here because the paper is in German.

Total sleeping time 374 mins
REM latency 220,5 mins
AHI 1,8
REM AHI 3,8
Duration of hypopneas 21 sec - 43 sec
medium spO2 during NREM and REM 92%
Lowest spO2 86%
Arousal Index 21,5
Snoring periods 140
Total snoring time 69,2 mins
Leg Movements 38

During the time when the study was done, I was using a strong nasal spray so I was nose breathing during the study, but normally I mostly mouth breathe. I wonder if this altered the results, but it is impossible to know :/ I didn’t think of it at that time.
My normal sleeping time is 8 hours, and at the sleep study they woke me up very early so I had less hours than usual.

Does anything in the study show a link to why my sleep quality is so poor?
Also wondering if the changing SpO2 and BPM are normal? There is only one longer period where they seem even.

at the time of my sleep study, I was a mouth breather, and I suspect my sleep study would have been different if I had been nose breathing.

Your lowest oxygen level dropping to 86% looks suspicious to me. In my personal experience, that was low enough to wake me up in a panic, and give me pretty bad headaches and brain fog and want to sleep all day. Are you still nose breathing, or are you back to mouth breathing? I went back and forth between the two, before deciding on nose breathing and learning to keep my tongue plastered to the roof of my mouth.

What looks strangest to me about your sleep study is your sleep architecture, and you can see an example of a hypnogram here https://www.researchgate.net/publicatio ... ures?lo=1

and see how REM sleep happens at the end of every sleep cycle? Well you don't have any at all for several hours, and then you have a lot. I know Jason from freecpapadvice.com says that it's not unusual to have delayed REM sleep onset with OSA, but yours is almost 4 hours. On the other hand, some of your medications might be doing that.

dogsarelife wrote: ↑

Sat Jul 06, 2019 12:04 pm

at the time of my sleep study, I was a mouth breather, and I suspect my sleep study would have been different if I had been nose breathing.

Your lowest oxygen level dropping to 86% looks suspicious to me. In my personal experience, that was low enough to wake me up in a panic, and give me pretty bad headaches and brain fog and want to sleep all day. Are you still nose breathing, or are you back to mouth breathing? I went back and forth between the two, before deciding on nose breathing and learning to keep my tongue plastered to the roof of my mouth.

What looks strangest to me about your sleep study is your sleep architecture, and you can see an example of a hypnogram here https://www.researchgate.net/publicatio ... ures?lo=1

and see how REM sleep happens at the end of every sleep cycle? Well you don't have any at all for several hours, and then you have a lot. I know Jason from freecpapadvice.com says that it's not unusual to have delayed REM sleep onset with OSA, but yours is almost 4 hours. On the other hand, some of your medications might be doing that.

Thanks for your reply dogsarelife!
When I fall asleep, I am nose breathing mostly, but when I wake up I find myself mouth breathing a lot of times. I sometimes use mouth tape to prevent that, but it depends on the level of nasal congestion whether I can use the tape or not.
I have found the sleep architecture to look weird as well. And I agree that it might be the meds (the trimipramine specially) causing this - I've tried tapering off it, but have struggles getting to sleep without it :/
I was thinking to get an oxymeter to check how my SpO2 looks like with the Apap.

what are the other medications you are on again besides trimipramine?

Wikipedia says this:

"Trimipramine's primary use in medicine is in the treatment of major depressive disorder,[10][11] especially where sedation is helpful due to its prominent sedative effects.[11] The drug is also an effective anxiolytic, and can be used in the treatment of anxiety.[7][8] In addition to depression and anxiety, trimipramine is effective in the treatment of insomnia, and unlike most other hypnotics, does not alter the normal sleep architecture.[7] In particular, it does not suppress REM sleep, and dreams are said to "brighten" during treatment.[7] Trimipramine also has some weak antipsychotic effects with a profile of activity described as similar to that of clozapine, and may be useful in the treatment of psychotic symptoms such as in delusional depression or schizophrenia.[5][6]"

so Wikipedia says it's not supposed to suppress any REM sleep. I guess it must be one of the other ones?

dogsarelife wrote: ↑

Sat Jul 06, 2019 4:54 pm

what are the other medications you are on again besides trimipramine?

Wikipedia says this:

"Trimipramine's primary use in medicine is in the treatment of major depressive disorder,[10][11] especially where sedation is helpful due to its prominent sedative effects.[11] The drug is also an effective anxiolytic, and can be used in the treatment of anxiety.[7][8] In addition to depression and anxiety, trimipramine is effective in the treatment of insomnia, and unlike most other hypnotics, does not alter the normal sleep architecture.[7] In particular, it does not suppress REM sleep, and dreams are said to "brighten" during treatment.[7] Trimipramine also has some weak antipsychotic effects with a profile of activity described as similar to that of clozapine, and may be useful in the treatment of psychotic symptoms such as in delusional depression or schizophrenia.[5][6]"

so Wikipedia says it's not supposed to suppress any REM sleep. I guess it must be one of the other ones?

oh that's weird. So the trimipramine shouldn't be the reason for the altered sleep architecture it seems.
Apart from the trimipramine I only take metformin and januvia for diabetes, no other psychiatric meds.