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jb.sing
Unread post  Post subject: this is VERY challenging  |  Posted: Mon Oct 10, 2016 3:26 pm

Joined: Thu Sep 08, 2016 4:33 pm
Posts: 179
PAP Mask: amara view,
PAP Machine: dreamstation a pap
Pressure Setting: 11

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So I did my best today with machine set up and mask fitting but this was REALLY hard on me. The man from the durable medical equipment place ended up leaving
and taking the machine with him saying i was not ready for cpap and him and i were both just got frustrated. He said he was going to call my doctor and talk to him about how challenging this is going to be and perhaps see if there area other treatment options or a better way for me to adjust to all this. I have sensory processing issues ,( meaning that certain sensations create anxiety and i just dont tolerate them) and I also process information slower than most.
HE suggested either a 2-3 hour appointment where we go slower or to have me spend time during the day at sleep lab to get used to wearing a mask and used to the air sensation etc.
I need full face mask due to frequent sinus infections, but we tried the amara view and that blew air into my eyes no matter what size we used.
I already get skin breakdown from my eyeglasses on my nose, so more things on the nose is a problem.The eyedoctor and primary care doctor just say its from your glasses.( DUH)
He tried another mask on me and the mask was ok, but the head gear straps went around my neck area, and That a NO-NO. I could tolerate something around the forehead and/ or around the ear area but not along the hair line.
I told the man I wanted to make this work, and he seemed to think that my doctor does not understand the special challenges I have and that i need extra support and patience.He stated he was not leaving the machine with me because he felt like it would be a fail and i would get too frustrated and quit.
I really appreciate him and can see how people give up before even trying, if their equipment is just quickly dropped off , and there is no follow up.
AND he is right, this pulmonary doctor doesnt get it.
not sure what will happen now. I guess the doctor will be calling me.

I am tired of not functioning well and do WANT to make this work. I hope there are people out in my local community that can help me.


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JasonInAlaska
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Mon Oct 10, 2016 4:34 pm
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Joined: Wed Jul 06, 2016 1:23 pm
Posts: 87
Location: Palmer, Alaska, USA
PAP Mask: DreamWear by Philips Respironics
PAP Machine: DreamStation Auto CPAP Machine by Philips Respironics
Humidifier: DreamStation Heated Humidifier & heated hose by Philips Respironics
Pressure Setting: 9-18

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I was wondering if a hybrid mask as the nasal pillows might resolve the air-blowing-in-your-face issue. But I just looked at a few and it appears they all have headgear that goes below the ear. I'm thinking that might be necessary to handle the part of the mask covering the mouth. But if the Amara View's straps didn't bother you, maybe one of the hybrids will have headgear similar to it.


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jb.sing
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Mon Oct 10, 2016 5:11 pm

Joined: Thu Sep 08, 2016 4:33 pm
Posts: 179
PAP Mask: amara view,
PAP Machine: dreamstation a pap
Pressure Setting: 11

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Thank you, Jason in Alaska. I was looking forward to getting better sleep tonight.Who knows how long i must wait now, to reschedule. THEN i must start this process all over again with another person, who also probably doesnt get autism. Even the guy who was here, said things that dont make sense.HE suggested a nasal mask but ask if I mouth breath, so I said well I snore. He says snoring doesnt mean you mouth breathe. REALLY? I never heard of a person snoring with their mouth closed. A person who snores can use a nasal mask? If so it would surely surprise me.
I looked at different masks on line, too and it seems all full face masks have those neck straps. Yes the amara seemed ok, but he tried medium and small on me and they both blew air up in my eyes.


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JasonInAlaska
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Mon Oct 10, 2016 9:48 pm
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Joined: Wed Jul 06, 2016 1:23 pm
Posts: 87
Location: Palmer, Alaska, USA
PAP Mask: DreamWear by Philips Respironics
PAP Machine: DreamStation Auto CPAP Machine by Philips Respironics
Humidifier: DreamStation Heated Humidifier & heated hose by Philips Respironics
Pressure Setting: 9-18

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I can snore with my mouth closed. My wife and kids do, too. However, when my apnea got really bad, my mouth opened up in an effort to get more air in. My first night on CPAP I went backto sleeping with my mouth shut.

But really, when they ask if you mouth-breath, they are asking about when you are awake. Generally speaking (there are exceptions), if you breath with your mouth closed during the day, you can breath with your mouth closed on CPAP.


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jb.sing
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Tue Oct 11, 2016 7:35 am

Joined: Thu Sep 08, 2016 4:33 pm
Posts: 179
PAP Mask: amara view,
PAP Machine: dreamstation a pap
Pressure Setting: 11

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Too bad the guy didnt explain that. Perhaps i could use a nasal mask and then figure something out later for when i have a cold or sinus infection.
When i turn to my side for some reason I can not breath thru nose, I sleep most of the night on my back ,so perhaps i could re visit the nasal mask as a solution.'
I appreciate it Jason


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Brandt
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Sat Oct 15, 2016 6:20 am

Joined: Thu Dec 17, 2015 10:57 am
Posts: 55
PAP Mask: ResMed F10
PAP Machine: ResMed AirCurve 10 Vauto BiLevel running in standard mode not autoset
Humidifier: Built-in set at 4
Pressure Setting: 15/11 cmH2O

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maybe get a mask like the Amera view and wear it during the day without the hose hooked up so you get use to just wearing the mask and breathing. you can just do 3 minutes at first and see if you can work your way up.

I used to scuba dive when I was a teen and I was supprised when i first put on cpap mask. Even i felt like I was not getting enought air. thats why I would say try just wearing mask So you can adjust to having it on your face before you try sleeping with it.


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jb.sing
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Sat Oct 15, 2016 7:41 am

Joined: Thu Sep 08, 2016 4:33 pm
Posts: 179
PAP Mask: amara view,
PAP Machine: dreamstation a pap
Pressure Setting: 11

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Hi Brandt . The man who came to my house tried to fit me with an amara view but both medium and small blew air into my eyes. It just doesnt work with the contours of my face. Its too bad because i didnt mind the straps. The mask itself doesnt bother me It is the headgear around the neck area.

Now I am suppossed to go to a sleep lab during the day for mask acclimation. I dont know how that works and am waiting for the call as to when it is scheduled.
THe straps around the neck are the problem. I never did experience how the air pressure works, since with the first masks, the air just went into my eyes .

Like my primary care doc said, this is challenging for anyone but for a person with sensory processing issues it really requires patience.
The oral devices are out because I already wear a mouth guard for TMJ.


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jb.sing
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Wed Oct 19, 2016 4:30 pm

Joined: Thu Sep 08, 2016 4:33 pm
Posts: 179
PAP Mask: amara view,
PAP Machine: dreamstation a pap
Pressure Setting: 11

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So after an hour and a half of working with a very nice sleep tech today, we decided on an amara view small size, even though it has a small mouth leak. She said i really need extra small but this company does not make them. She felt that the small leak would be ok since i am not likely to comply with anything else.She also suggested that i sleep on my side most of the time to reduce events since they are more likely to occur when on my back.


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trish6hundred
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Wed Oct 19, 2016 7:30 pm

Joined: Tue Apr 14, 2015 12:10 pm
Posts: 736
PAP Mask: Fisher & Paykel Simplus
PAP Machine: Resmed S9AutoSet for Her
Humidifier: H5I
Pressure Setting: Titrated Pressure is 10 CM-H2O, I use a range of 7/20 CM-H2O.

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Hi jb.sing,
I hope things go well for you as you try to get used to CPAP therapy and I'm sorry you are having so many challenges.
Good luck to you and I look forward to hearing how things go.


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jb.sing
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Fri Oct 21, 2016 2:44 pm

Joined: Thu Sep 08, 2016 4:33 pm
Posts: 179
PAP Mask: amara view,
PAP Machine: dreamstation a pap
Pressure Setting: 11

Offline
Thank You, Trish. Now i have to wait again. The doctor has to agree to the mask with the small leak in it, Then he has to send an order to the durable medical equipment. Then they have to fit me into the schedule for a home visit to drop off the equipment.I will post how things go once set up and starting treatment.


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Tallguy
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Mon Jun 25, 2018 11:05 pm

Joined: Sun Jun 17, 2018 3:32 pm
Posts: 13
Location: Northern California
PAP Mask: Resmed F20
PAP Machine: Resmed Aircurve 10 vauto bipap
Humidifier: Box included with machine.
Pressure Setting: Vauto, min 10, max 25, ps 5

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I an new. This is really difficult getting used to a mask. Right now I use an aircurve 10 vauto. The machine is pretty much silent but having a mask on robs me of sleep and makes my face itch. I think strong sedatives would make this more effective.


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MNsleeper
Unread post  Post subject: Re: this is VERY challenging  |  Posted: Thu Jul 05, 2018 5:14 pm

Joined: Sat Jun 02, 2018 11:41 am
Posts: 42
PAP Mask: Dreamwear nasal, FFM
PAP Machine: Phillips Respronics
Pressure Setting: 4-20

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I am new as well, about 6 weeks in now and I hear you. It is getting better though. I use the F10 mask and have tried the Dreamwear nasal mask and the ffm as well. I’ve settled on the F10 with a liner I just got. The liner is awesome and even quiets the noise of the mask itself I think. I am sleeping more and more and the sleep I get is better. I have also adjusted my machine down in pressure to about the lowest setting and I sleep with cervical collar which keeps my mouth closed.
These are all things that I have just tried out and I am keeping what works. It is a process I am finding. Keep at it and the good sleep with hopefully come soon!


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