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[split] losballos - Therapy Thread
#1
[split] losballos - Therapy Thread
Hi all,

So to share my story. I am new in the apnea world. I have had severe health related problems for at least 4 years now. Mostly related to lack of concentration, dizziness, tiredness, lack of strength. This has brought me into total isolation, im just not in the mood to meet people, as it costs me too much energy to even talk and concentrate when talking. I just sit at home work and wait until i can go to bed again and hope I wake up a bit better the next day.

Been to many many docters, but they couldn't find anything. In the end I just waited it out because docs think it is a burnout.

However, i've been monitoring my sleep with apps and such, and found out that I am a heavy snoring person. And on multiple occasions I found myself actually getting more sick from sleeping than from being awake. Especially after REM sleep at the last stage of my sleep, I find myself to become more and more sick. 

This made me decide to get a resmed 11 apap. So far the results are promising. I can concentrate more easily, have a bit more energy, and snoring is completely stopped. My AHI went from 5 to <2, and trying to get it down more. But the AHI is not my main concern. My main concern is that most of my events happen during REM, confirming my suspicion of REM f****** up my health, and sometimes I stop breathing for 70 seconds. These are mostly central events. 

I have yet to get the result of the sleep study which I also did recently. So I don't know yet what numbers I would have untreated.

Bottom line, I do think that CPAP/APAP is helping me, my nerve system has calmed down, no more sensitivity for sound, and no more waking up so much during the night. But I am still having concentration issues and lack of strength. This is after 6 weeks of using APAP. 

How long did it take for you guys before you felt better? (I notice most posts here don't mention if they actually recovered and how long it took) I would like to live my old life again, going on trips, doing active sports such as mountain biking, and making plans for the future.

Attached my screenshot of first day on apap, where you can see my events are mostly during the 2nd half of my sleep, and a screenshot with me not breathing for 69 seconds. Any tips are much appreciated.


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#2
RE: Your Personal CPAP Success Story - Post Here
Greetings losballos and   Welcome


I'm no expert at reading OSCAR screen snapshots or sleep reports, but I can share my experience. I was diagnosed with complex apnea and an AHI of about 40. I believe mine went unrecognized and undiagnosed for many decades. Unfortunately that meant my body suffered decades of damage. When my PCP rattled off a laundry list of health issues related to sleep apnea, I mentally said "yup" to all but one. And there were nearly a couple dozen things he mentioned.

I purchased a ResMed ASV to treat my complex apnea. If you do have centrals, you would need an ASV machine too. However if your AHI is truly only 5 or so without treatment, there may be other options. The experts would have to chime in with options.

As far as how long did it take to realize positive results? For me, that would be about nine months of ASV use. Sure, my AHI numbers dropped immediately, but remember when I said 'decades of damage'? I think it just took a long time for things in my body to heal up and eventually realize the improvements thereof. This is definitely not typical. But my point being, stick with it, know whatever damage may be done may take time to resolve. I believe most people start seeing health improvements within days to weeks. Fortunately, I didn't get discouraged.

On the upside, if I am off my machine for a couple weeks to a month or so, I really don't feel any ill effects or lack of energy throughout the day. This was put to the test when I had an overly-sensitive wisdom tooth that would impose excruciating pain within only 30 minutes after masking up. Had to wait about three weeks for the extraction and healing process before I could get back on my ASV machine. I felt no ill effects of being off-PAP for that time.

When you get your sleep study, go through it and remove all of your personal information and then post the redacted report here. The experts will be able to provide you with a lot of great information and get you headed down the right path rather quickly.

You may be directed to a new thread specific to your issue, and the moderators my create a new post on your behalf and move your original post (above) over there. Your needs would be more visible and responses would come in more quickly.

Hope all will be improving soon.
RayBee

~ Self-Treatment - via ApneaBoard experts.
~ Self-Pay - no help from Kaiser other than getting my script, then a pat on the butt and out the door.
~ Self-Educated - via ApneaBoard experts, its many users, and posted reference material.
~ Complex Apnea - All Night AHI=34.2/h, Supine AHI=45.5/h
~ Using a 2021 16" MacBook Pro M1 Max, 32 GB, 1 TB, macOS Monterey V12.6.
~ Pay no attention to the dog behind the cup, he ain't a docta, and does not give medical advise.
~ Woof, woof.

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#3
RE: [split] losballos - Therapy Thread
It will be interesting to see your sleep study results as it seems most events are central with the CPAP. Results on December 17 are much better with EPR 1 than November 4 without EPR. I think in your case we are going to need to see additional charts and varied settings to see if a pattern or trend emerges. Have you tried EPR greater than 1? Can you correlate results to the use of pressure or EPR?
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: [split] losballos - Therapy Thread
Hi Guys, thanks for your response. helps a lot to have you guys think along, I am kind of alone in this battle.  

@sleeprider I did try a larger EPR setting, however I got big central apnea's from it, some of them lasting up to 70 seconds.

@raybee, that story of decades of damage resonates with me, and in case my health issues come from apnea's I feel that it's been going on for a long time as well.

I want to give you a small update on my situation. 

I've completed the sleep study, and the AHI is 5.4, however it's 7.1 during REM. To be honest I think the fact that I was on CPAP already for 2 months before doing the sleep study, might have caused it to be lower than if I had a sleep study prior to starting CPAP. I think it would be closer to 10-15 untreated, and that for many years. As i know that ive been snoring for a long time. (10+years).

Anyway... 

I didnt get any more information from the docs (they also didnt want to give the full report) than what I showed you guys here. So 5.4 AHI and 7.1 during REM. This does however confirm my suspicion that REM is where I suffer most. (before CPAP I always found to feel really bad during the second half of sleep of a night).

Advice from the docter is to start with APAP 5-10 and EPR1. However I found that 8-10.5 gives me better results with EPR0.  

Attached a screenshot of last night. It looks pretty good, it's not perfect yet though. Flow limitation is still a thing and I'm still having a lot of unstable flow rate with lot's of hypopnea's (most of them not large enough to be identified as such).

I'm hoping that with time I will get more energy, I am now in my 3rd month of CPAP, I do see some improvements but it's slow.

The largest improvement so far is that I feel a bit better in the mornings, and less nightly toilet visits. This allows me to do a bit more work and focus, but after lunch I do get a large dip, and feel tired with brain fog during the remainder of the day. Physical exercise is still a bridge too far, small walks is possible though.

As for the hypopnea's and flow limit, I am thinking of experimenting with raising the pressure upper limit a little bit to give it more headroom, but doing so in steps.


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#5
RE: [split] losballos - Therapy Thread
Losballos, I suspected that increased EPR would result in more centrals. Your response to my question about higher EPR is not a surprise, and as I said before, I suspect your problem is mainly central. Unfortunately your doctors don't think you have a right to your own medical test results. Fortunately you seem to be doing pretty well at your current settings. Have you tried fixed pressure?
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: [split] losballos - Therapy Thread
In the US if you ask for a copy of your complete sleep study, your doctor MUST give it to you.  I don't know if that's true in Holland, but it may well be the same as here.  Ask for it and hope for the best. Smile
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#7
RE: [split] losballos - Therapy Thread
Sleeprider is a super-expert. My grandkids would call him The Bomb, a highly complementary term in their vernacular. Do what he says. My understanding is that ASV is purpose-built to handle CA and other complex events.

As to the timing, I suppose each person is somewhat different. In my case it took about 3 months before I felt truly significant results, but smooth sailing afterwards. Stay the course.
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#8
RE: [split] losballos - Therapy Thread
There is a pinned thread for "personal success stories" near the top of main forum page. Lots of folks telling their story. Might be beneficial to read those and know that many people have better sleep because of the expert advice here.

I think sometimes random threads end because the person asking for help no longer needs it. That's a win.

Listen to Sleeprider, super expert for real.
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