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First Post - Need general advice...so many questions! - Printable Version

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First Post - Need general advice...so many questions! - annclarktx - 03-19-2021

[attachment=30916][attachment=30915][attachment=30917]This is my first post and I will probably end up sounding crazy like a crazy lady! I will try and make this short but my biggest fault is overtalking and oversharing so here I go...

I got a Redmed Airsense 10 Autoset back in 2016 by my doctor. Long story short, I was never able to get used to it (severe claustrophobia) and it has been sitting in my closet since. By the way, my Apnea was so minor I barely qualified -my pressure was 4. Move to present time-My husband of 7 yrs has undiagnosed Apnea, and believe me there is NO question he has it. In the last year as he gained more weight it has become so severe I am honestly worried every night he wont make it till morning. Almost every night he has multiple episodes where he is not breathing but his chest will start heaving up and down trying to get a breath that can last upward to 20 or more seconds sometimes and it wakes me up from my sleep and I shake him, at which he starts to breath taking deep breaths. He wakes up multiple times a night and makes sounds. Most nights he ends up moving to the recliner to sleep. Like I said it is getting worse. I cant imagine anyone having Apnea worse than him.

Problem is I got laid off because of Covid and he has no insurance so there is no way we can afford any kind of sleep study. So at this point I figured until we can get him into a doctor I am putting him on my unused machine. This is not a permanent solution but I sincerely believe it is better than not doing anything. Hopefully we will be able to get him to see a doctor and also a sleep study by the end of the year. I read a bunch from forum and I got the manual. I set up the pressures on recommendations read here and in manual. He has used it 3 night now. I downloaded the data and attached the reports. I dont understand any of it though! But right now I am just trying to get it to work because he is a stubborn "mans-man", ex football player that things he is invincible with hard-head and impatient and if we cant figure out quickly how to get the "kinks" worked out I have no doubt he will not keep using it. 

Right now the biggest issue is finding the right mask. The one he is using is a nasal mask that was provided to me. I am 5', 5" female with normal size face. He is a 6' 5" man who is built like a linebacker and weighs apx 350 with a head the size of a gorilla! I love my man but he is a very big dude! He is a very active sleeper and prefers sleeping on his side with pillow under his arm. He has already said there is no way he can handle a full face mask, but he did put mine on to see how it felt but since it wasnt even big enough to cover his nose and mouth not even a consideration (think of the memes where you see a face squashed into a glass jar!).  The nasal actually works but his nose fills up the entire thing with his nostrils very close to the bottom. The problem is he has so much.....hmmm, not a polite way to say this....fat on his face that when he lays on his side it pushes the nasal up and sideways so it leaks. I am not sure if this can be solved by a bigger nasal mask?

So, my fist question is this: is there any company or place where I can purchase just ONE EACH of several different styles and sizes of mask to try? My money recourses is VERY limited so I cant afford to buy large quantities of mask just to find out they wont work. And if we find one that works, will they sell them to you without a prescription? We are not trying to bypass any doctors or self-meditate or anything else crazy like that. I have a particular heart condition that requires me to go to the doctor on a regular basis so I am very pro-physician. But I go under a special insurance program that I quality for and he doesnt. I really feel though like keeping him off a CPAP machine any longer is a life or death thing.

Second, question: If anyone can interpret these reports that would be great. I understand you are not a doctor, that he needs a sleep study to be properly diagnosed, and everything we are doing is not the recommended way of starting therapy. I just dont understand all the numbers. I am actually not even entirely sure I have the machine set up right...dont understand the ERP thing. 

Any and all advice, comments, is welcomed! Since I can only attach 3 attachments and it looks like screenshots is preferred I only am sending day 1 data. I have day 2 and 3 and stats also. 

Ann


RE: First Post - Need general advice...so many questions! - annclarktx - 03-19-2021

Also, quick note. I made sure NO name or personal identifiable information is on my post and screenshots in regards to my husband. We do not share a last name and have never legally been married, so I believe there are no HIPPA rules being violated in regards to me discussing his condition. Since I am new to this web site I am not even sure if it is an issue but thought it might be important to state.


RE: First Post - Need general advice...so many questions! - Sleeprider - 03-19-2021

Let's start with a mask. The least intrusive and quietest mask is a Resmed Airfit P10 nasal pillows mask. It is silent, doesn't blow a stream of air and comes with 3-pillow sizes. Your husband will use Large like me. Many of us use this mask with good results, and I trust his results will be better than using yours which is too small and resulting in abundant leaks.

Your settings of minimum pressure 9.0 and maximum 14.0 are fine for starting out, but you need to get into the clinical settings and turn on EPR full time at a setting of 3. EPR is exhale pressure relief, and is bilevel pressure. So with EPR at 3 his pressure will start at 9.0/6.0 and go to 14.0/11.0 (inh ale/exhale). This pressure support helps lower flow limitations which are very high in his charts, and will help stabilize pressure. We may need a higher pressure setting, but this will make CPAP comfortable and tolerable. From the chart posted, resolving flow limitations and leaks will greatly improve everything. This is going to work great! No worries about HIPAA.

Here is a tutorial on getting into the settings https://www.apneaboard.com/resmed-airsense-10-aircurve-10-setup-info
Follow the directions on this link to request a copy of the clinician manual https://www.apneaboard.com/adjust-cpap-pressure/change-cpap-pressure-settings-adjusting-your-machine-with-a-clinician-setup-manual
On future charts, the first one you posted is perfect, just minimize the monthly calendar by clicking the triangle in the date.


RE: First Post - Need general advice...so many questions! - LBTRS - 03-19-2021

An FYI, you can get cheap home sleep studies with a prescription. I think I seen one of the more popular ones is $189.

I was having terrible insomnia (couldn't sleep a wink) due to my apnea and getting a sleep study was going to take months. I couldn't wait that long and paid for a home sleep study and purchased my own machine because I was dying (literally) with no sleep for the month before I got my machine.

Just wanted to make you aware in case it could help. Good luck to your husband.


RE: First Post - Need general advice...so many questions! - Sleeprider - 03-19-2021

If you want to get the Resmed Airfit P10 mask without a prescription, you need to buy separate parts. I will give you some products to look for on EBay. We don't post commercial links on the forum, but you should be able to find this with a search.

Cushions large: ResMed Airfit P10 Nasal Pillows 62933 LARGE NEW (Not Sealed) LOT of 3 FREE SHIP $20.50 Listing 387938

Headgear: Resmed Airfit P10 Headgear Blue Clips for Nasal Mask Replacement NEW Retail $7.95 Listing 353402418986

Mask frame on Amazon: P10_Short Tube & Frame, No Headgear, No Cushion $39.99

You can mix and match parts, but this gives you a complete mask and headgear with 3-nasal pillow cushions for $69. That's pretty good. You could make your life easier just using your prescription and buying through online suppliers like Supplier #1, but the above parts are cheaper than a complete mask.


RE: First Post - Need general advice...so many questions! - annclarktx - 03-20-2021

Thank you so much for the info! 

Quick question -When asking questions here on the forum, what are the key graphic charts that are important to include in the screenshot? It looks like I can fit 5 charts so for example would it be important to include event flags, pressure, minute, flow limit, and leak rate (just guessing at which ones) or some other combination? Also, when replying back to a post on your discussion do you reply with quote?

I did turn on the EPR at 3 and I think it helped. I noticed that he did not breath out of his mouth as much and had longer periods between episodes. What I did notice is when he does have a event, right after that is when he loses a good seal on the mask. He is still taking it off during a few times during the night and then putting back on because and he is saying that sometimes it feels like he just cant get a deep enough breath or seems like he is having to work at it and needs a break. I upped his min and max pressures and also turned the ramp up off and that seemed to help some. I cant tell by looking at his charts if he is hitting the max and I need up it more though.


RE: First Post - Need general advice...so many questions! - Sleeprider - 03-20-2021

We have a wiki about Organizing your Oscar Charts. It's linked in my signature, and that wiki suggests a chart include
Event Flags
Flow Rate
Pressure
Leak Rate
Flow Limit (Resmed only. Respironics includes Flow Limitation in Events)
Snore
http://www.apneaboard.com/wiki/index.php?title=OSCAR_Chart_Organization
Resolving leaks is going to be the biggest challenge to get to good therapy, and that means he needs a mask that fits. I think once he gets a mask that fits, much of the claustrophobic and airflow problem will be resolved. I'm sure you are working on it. The next think to be aware of is your husband's tendency to cut off his airway by tucking his chin. We can see that his obstructive events seem to occur in clusters. It is not as bad as many cases we have seen, but be aware that a pillow(s) that is too to tall or firm can cause this positional airway occlusion. We have a wiki for that http://www.apneaboard.com/wiki/index.php/Optimizing_therapy#Positional_Apnea This may be why he feels at time he does not get enough air, and the solution is to get the chin up. Awareness is sometimes enough to resolve this, others use a soft cervical collar. This case looks manageable with awareness.