New to ACPAP/UARS

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
Miss Emerita
Posts: 2735
Joined: Sun Nov 04, 2018 8:07 pm

Re: New to ACPAP/UARS

Post by Miss Emerita » Mon Jan 23, 2023 11:51 am

About suffocation fears: I use Somnifix strips, and I used one to check whether I could open my mouth with it on. Although it was uncomfortable, I definitely could. I also use a plug-in circuit alarm, in case the electricity goes off at night.

But if your tape was intact at the end of the night you used it, your leak problems are probably from mask leaks, as robysue explains.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Seb-Sanfilippo
Posts: 24
Joined: Mon Jan 16, 2023 1:49 am

Re: New to ACPAP/UARS

Post by Seb-Sanfilippo » Tue Jan 24, 2023 12:31 am

I followed Nicko's advice from SleepHQ and fixed my pressure to 4cm the whole night.
He said "Hey mate, if you want to look at your breathing, change to CPAP mode at a fixed pressure of 4cm."
Not sure what he meant by that but I did it anyway.
I feel pretty lousy this morning maybe even a bit worse than usual.
I tapped my mouth but I woke up at 3:40 with a bit of a stuffy nose. I cleared my nose and went back to sleep.
Maybe you can see something in my data that could help.
Thanks

https://sleephq.com/public/9409e614-d8d ... 63c6198f16

Seb-Sanfilippo
Posts: 24
Joined: Mon Jan 16, 2023 1:49 am

Re: New to ACPAP/UARS

Post by Seb-Sanfilippo » Tue Jan 24, 2023 11:07 am

Just got the results of my psg from the doctor. She says there’s nothing to explain my extreme fatigue. She said there were a few hypotonias and some sleep fragmentation but according to her nothing that would cause such debilitating symptoms. She recommends that I see a psychiatrist. I am really confused now and afraid they missed something.

I can’t share the psg because she must first send it to my gp

User avatar
Miss Emerita
Posts: 2735
Joined: Sun Nov 04, 2018 8:07 pm

Re: New to ACPAP/UARS

Post by Miss Emerita » Tue Jan 24, 2023 12:46 pm

I'll be curious to see your sleep study report (with personal information blanked out) once you get it.

I'm also curious whether you've been evaluated for other possible issues that could result in deep fatigue. These include thyroid problems, anemia, connective tissue disease (or other autoimmune diseases), Lyme disease, low testosterone (for men) and chronic fatigue syndrome.

The pointer toward a psychiatric disorder may be pointing in the right direction -- but it may not be. I would strongly recommend following up on other fronts first, or at least at the same time.

It's true that depression can lead to a sense of fatigue, but it's also true that when someone is deeply fatigued, depression may simply be a response to the ways in which the fatigue makes life difficult.

If you talk with your doctor about other possible causes of your fatigue, be sure to mention that it started in Sept of 2022. Try hard to think if anything else potentially relevant happened at around the same time, ranging from getting a cold to suffering a bereavement. This could include moving to a new house or apartment, noticing a rash or swelling, traveling to a foreign country, testing positive for Covid, changing your diet or your drinking habits -- lots of things to think about.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Seb-Sanfilippo
Posts: 24
Joined: Mon Jan 16, 2023 1:49 am

Re: New to ACPAP/UARS

Post by Seb-Sanfilippo » Wed Jan 25, 2023 3:52 am

In the middle of the night I remembered something the doctor said at the end of the consultation.
She said I sigh during my sleep, according to her that's a sign of anxiety.
But later I remembered I have a recording where I can hear @1" breathing through my nose, @2" my airway sounds like it's collapsing and makes a 'plopping' sound, @6" I can hear an expiratory resistance and @8" I can hear a 'puffing' sound probably through my mouth. I make a few 'puffing' sounds and then my breathing switches back to breathing through my nose @18"

Here is a link to the recording

https://voca.ro/1363nKqxXdDV

Seb-Sanfilippo
Posts: 24
Joined: Mon Jan 16, 2023 1:49 am

Re: New to ACPAP/UARS

Post by Seb-Sanfilippo » Thu Jan 26, 2023 1:45 pm

Hi, I am at the end of my rope. I felt so bad this morning that I almost went to psychiatric emergency. I am thinking more and more about ending my life.
The fatigue is just so unbearable and I can't seem to get any help.
The sleep doctor dismissed sleep apnea and UARS and that there's no reason for me to use a CPAP and that I should take antidepressant instead. The doctors report says my AHI is 9.6, that I have severe problem with maintaining sleep through the night and I have light Hypopnea syndrome linked to the REM sleep. I don't have any other info and I can't get anyone to send me the actual PSG results.
I am so lost, I feel totally abandoned and I have to live with this unbearable fatigue. It's really torture, I didn't know fatigue is actually painful.
I stopped CPAP for two days but I will get back to it and give all I can to make it work, my life depends on it.

User avatar
palerider
Posts: 31610
Joined: Wed Dec 16, 2009 5:43 pm
Location: Dallas(ish).

Re: New to ACPAP/UARS

Post by palerider » Thu Jan 26, 2023 2:12 pm

Seb-Sanfilippo wrote:
Sun Jan 22, 2023 12:23 pm
What is it about mouth-taping that you find upsetting to think about
Death by suffocation!
That will never happen. if the machine goes off, and your mouth is taped, you WILL wake up as your CO₂ levels increase, and you're trying to breathe more and more, at which point you'll remove the nasal pillows and breathe through your nose, if you haven't done so before you even wake up.
You will not suffocate. I often use tape, for various reasons, I'm still around, much to the consternation of the trolls that hate me. :D I can't give them the satisfaction of finding out I suffocated to death.

_________________
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: S9 VPAP Auto
Get OSCAR

Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

User avatar
palerider
Posts: 31610
Joined: Wed Dec 16, 2009 5:43 pm
Location: Dallas(ish).

Re: New to ACPAP/UARS

Post by palerider » Thu Jan 26, 2023 2:15 pm

Seb-Sanfilippo wrote:
Tue Jan 24, 2023 12:31 am
I followed Nicko's advice from SleepHQ and fixed my pressure to 4cm the whole night.
Uncle cracko probably shouldn't ever be listened to.
Seb-Sanfilippo wrote:
Tue Jan 24, 2023 12:31 am
He said "Hey mate, if you want to look at your breathing, change to CPAP mode at a fixed pressure of 4cm."
Not sure what he meant by that but I did it anyway.
it's a way to get people to have a terrible night.

_________________
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: S9 VPAP Auto
Get OSCAR

Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

User avatar
Miss Emerita
Posts: 2735
Joined: Sun Nov 04, 2018 8:07 pm

Re: New to ACPAP/UARS

Post by Miss Emerita » Thu Jan 26, 2023 5:13 pm

Most people feel air-starved at a pressure of 4. I don't understand what's to be gained by keeping your pressure there. Reset it to whatever is comfortable for you.

I strongly encourage you to go to psychiatric emergency. Quite apart from whether your root problems are or are not psychological in nature, you are thinking about ending your life, and that's most definitely a psychiatric emergency.

Please go, now.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Seb-Sanfilippo
Posts: 24
Joined: Mon Jan 16, 2023 1:49 am

Re: New to ACPAP/UARS

Post by Seb-Sanfilippo » Fri Jan 27, 2023 12:40 pm

I went to psychiatric emergency today. The looked very concerned and didn't really know how to help since it's not clear if my problem is physiological or psychological.
I have to go back on Tuesday to evaluate if I should be hospitalised.
I am not sure it makes sense for me to stay at hospital if the only thing they can do for me is give me some benzos or other sleeping pills.
I've tried most pills and was still terribly fatigued. I've been severely fatigued for 5 months now with no breaks. Everyday the same unrelenting exhaustion.
I will try to see if there's some kind of communication between psychiatry and the sleep department.
Do you have any suggestion as to how I can prepare for Tuesday. What I should ask for or things I should tell them?

User avatar
Miss Emerita
Posts: 2735
Joined: Sun Nov 04, 2018 8:07 pm

Re: New to ACPAP/UARS

Post by Miss Emerita » Fri Jan 27, 2023 4:55 pm

I'm so glad you went, and if they decide on Tuesday that you'd benefit from hospitalization, I'd strongly recommend that you don't try to second-guess them and just take their advice.

As for preparation -- I find it very useful to take a written document with me that clearly states the relevant points I want to get across. I've looked back at your posts, and here is the kind of thing I would write up if I were in your place:

Before September of 2022, I was not feeling unusually fatigued, I did not seem to be having respiration-disordered breathing, and I did not suffer from depression or anxiety.

In September of 2022, I began to feel very fatigued, and I began to notice that I was having unrestful sleep, morning headache, dry nose and throat, and neck stiffness.

By December of 2022, I was unable to work. I was also by then experiencing depression, anxiety, palpitations, and acid reflux.

I consulted a doctor, who prescribed Trazedone. I requested a PSG study. It showed that my AHI is 9.6, that I have severe problem with maintaining sleep through the night, and that I have a light hypopnea syndrome linked to the REM sleep.

I have not yet been tested to rule out other causes of the fatigue, e.g., low testosterone, anemia, autoimmune disease, Lyme disease, chronic fatigue syndrome, postural orthostatic tachycardia syndrome, or a thyroid disorder.

I believe the anxiety and depression started after I began to experience fatigue, as a response to the effects the fatigue was having on my life. Likewise, my suicidal thoughts have arisen recently as I contemplate continuing my life in my current condition.

With PAP therapy, I am having an AHI that is generally under 1, and I am no longer experiencing a dry nose and throat. While I have recently been marginally less fatigued, neither the Trazedone nor the PAP therapy have made a significant difference in my condition
.

(Of course, I may have gotten some of that wrong!)

One additional thing: You've referred to "fatigue." In English, at any rate, people can mean two rather different things by this. One is best described as sleepiness: the urge to sleep during the day. The other is what I think of as true "fatigue": the kind of feeling we have when we have the flu, as though any exertion can take place only through an act of will. Try hard to think about which of these apply to you (or maybe both do).

Several other things about describing your fatigue: Does it get worse when you exert yourself, e.g., by walking? And what goes along with it: difficulty in thinking of the words for things? difficulty in sustaining attention? difficulty in following a complex train of thought? difficult in speaking at a normal pace? a disinclination to get out of bed? feeling that your muscles are weak? And if you can be specific about the ways your condition has disabled you from work, that could be very helpful.

If possible, bring a trusted friend or family member with you when you go for your Tuesday appointment. That can be a big help in making sure the doctor is truly grasping what you're communicating and in helping you remember later what was said by and to you.

In your place, I would be asking for help in identifying the cause of the fatigue. And in your place I would allow as a theoretical possibility that the fatigue is intensified by depression and anxiety, but I would not allow my medical help to lose track of the fact that the depression and anxiety developed AFTER the fatigue (if that is in fact correct).

I would also recommend asking for help in protecting your life despite thoughts of suicide.

P.S. In case POTS is not familiar to you: https://www.hopkinsmedicine.org/health/ ... me-fatigue
Oscar software is available at https://www.sleepfiles.com/OSCAR/

dataq1
Posts: 652
Joined: Sat Dec 24, 2005 8:09 am
Location: Northeast Ohio

Re: New to ACPAP/UARS

Post by dataq1 » Mon Jan 30, 2023 3:10 pm

Seb-Sanfilippo wrote:
Tue Jan 24, 2023 11:07 am
Just got the results of my psg from the doctor. She says there’s nothing to explain my extreme fatigue. She said there were a few hypotonias and some sleep fragmentation but according to her nothing that would cause such debilitating symptoms. She recommends that I see a psychiatrist. I am really confused now and afraid they missed something.

I can’t share the psg because she must first send it to my gp
Are you ever going to get your PSG report? Please share that here. By the way, did your GP order (or prescribe) PaP therapy?
.
"THE INFORMATION PROVIDED ON CPAPTALK.COM IS NOT INTENDED NOR RECOMMENDED AS A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE."