19 Year Old Diagnosed Months Ago And Struggling A LOT
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- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
19 Year Old Diagnosed Months Ago And Struggling A LOT
Hi all!
I am a 19 year old 110 pound male from Australia and for the last few years of my life I had battled a lot with extreme fatigue. I would be and still am tired all the time and since it all started have felt like i've been half alive because I have been so tired even when most nights I sleep 8-12 hours a day. For years my doctors dismissed the issue or did blood tests on things that they thought it might be such as Diabetes. Earlier this year I had had enough with feeling this way all the time and was sure something was medically wrong, so I decided I would go to every doctor I could to figure out what the problem was, and again after multiple doctors visits and tests nothing came up, perfectly normal they would say... so I gave up.
Then one night I was listening to an old random Joe Rogan podcast with Steve-o as the guest, and if memory serves me right I believe Joe had brought up the topic of sleep apnoea and how much it had affected him and how it is a very serious issue and I think he listed out some symptoms or how it made you feel and like a light in my head it sparked bright enough to fill my entire city, this happened because i remember one day when a friend sleeped over a whole TWO years ago he mentioned how I sounded like I was getting choked out while I was sleeping; I dismissed this as him being overdramatic but once I heard Joe talk about sleep apnoea on the podcast it brought me back right to that moment and now it had all made sense. So I recorded myself sleeping that very night, and turns out my friend was right. I was choking EXTREMELY loud in my sleep and now everything had made sense. As soon as I woke up I booked a doctors appointment that very day and told him I think it might be sleep apnoea to which he referred me to a sleep specialist to see the next week.
The next week I went in and they explained the whole thing and what sleep apnoea was, they then booked me in for an at home sleep study. Now for this sleep study i was a little skeptical of the results since I am VERY skinny the thing I had to put around my chest and stomach was EXTREMELy loose and when I woke up the nasal thing was off but I slept for around 6-7 hours for the sleep study and when the results came back it said I had mild sleep apnoea. So they then set me up with a cpap trial where they rented out to me a Phillips Dreamliner with only the nasal mask.
I got this on May 12th and since then I have used the Cpap a total of 0 nights of full sleep, I fell asleep with it since then around 4 times but 2 times I woke up around 3 hours into my sleep because the mask filled up with moisture and I took it off while I was half asleep not realising and another time where i got woken up around 2 hours in and another time when my alarm woke me up 3 hours in. Since about 4 weeks ago I switched to a full face mask as I would sometimes every 20 minutes or so want to take a deep breath through my mouth. They have replaced the mask for me and also upped the tube temperature to stop the mask from filling with moisture while I fell asleep with it.
I got this certain mask (still on the Phillips Dreamliner) about a month ago now and since then I have fallen asleep with it 0 times. I decided to make this post because I think for the people I have in my life you guys would be the only ones to be able to understand my situation, everyone in my life either made fun of it or with my mom who thinks that the disease is fake for the sleep clinic to make money. Everyone in my life disregards it since I am so skinny and they think it is only a disease people who are bigger can have. The reason I haven't used it is because of the lack of support really and the fact that it is very hard to fall asleep with the mask as i feel like I barely get any oxygen with it on (my pressure setting is at 6 or ramped starting at 5), it used to be 4 but then they changed it to the current settings as they said this might help.
But I'm making this post as I have set my mind that tonight, no matter what, I will keep this damn mask on for a full nights sleep, I've turned off all my alarms and am determined as hell to finally sleep with it and I don't want to disappoint any of you guys. Hopefully tomorrow morning I'll be able to tell all you guys when I wake up, I did it, i kept it on. Goodnight everyone cyu in the morniing
I am a 19 year old 110 pound male from Australia and for the last few years of my life I had battled a lot with extreme fatigue. I would be and still am tired all the time and since it all started have felt like i've been half alive because I have been so tired even when most nights I sleep 8-12 hours a day. For years my doctors dismissed the issue or did blood tests on things that they thought it might be such as Diabetes. Earlier this year I had had enough with feeling this way all the time and was sure something was medically wrong, so I decided I would go to every doctor I could to figure out what the problem was, and again after multiple doctors visits and tests nothing came up, perfectly normal they would say... so I gave up.
Then one night I was listening to an old random Joe Rogan podcast with Steve-o as the guest, and if memory serves me right I believe Joe had brought up the topic of sleep apnoea and how much it had affected him and how it is a very serious issue and I think he listed out some symptoms or how it made you feel and like a light in my head it sparked bright enough to fill my entire city, this happened because i remember one day when a friend sleeped over a whole TWO years ago he mentioned how I sounded like I was getting choked out while I was sleeping; I dismissed this as him being overdramatic but once I heard Joe talk about sleep apnoea on the podcast it brought me back right to that moment and now it had all made sense. So I recorded myself sleeping that very night, and turns out my friend was right. I was choking EXTREMELY loud in my sleep and now everything had made sense. As soon as I woke up I booked a doctors appointment that very day and told him I think it might be sleep apnoea to which he referred me to a sleep specialist to see the next week.
The next week I went in and they explained the whole thing and what sleep apnoea was, they then booked me in for an at home sleep study. Now for this sleep study i was a little skeptical of the results since I am VERY skinny the thing I had to put around my chest and stomach was EXTREMELy loose and when I woke up the nasal thing was off but I slept for around 6-7 hours for the sleep study and when the results came back it said I had mild sleep apnoea. So they then set me up with a cpap trial where they rented out to me a Phillips Dreamliner with only the nasal mask.
I got this on May 12th and since then I have used the Cpap a total of 0 nights of full sleep, I fell asleep with it since then around 4 times but 2 times I woke up around 3 hours into my sleep because the mask filled up with moisture and I took it off while I was half asleep not realising and another time where i got woken up around 2 hours in and another time when my alarm woke me up 3 hours in. Since about 4 weeks ago I switched to a full face mask as I would sometimes every 20 minutes or so want to take a deep breath through my mouth. They have replaced the mask for me and also upped the tube temperature to stop the mask from filling with moisture while I fell asleep with it.
I got this certain mask (still on the Phillips Dreamliner) about a month ago now and since then I have fallen asleep with it 0 times. I decided to make this post because I think for the people I have in my life you guys would be the only ones to be able to understand my situation, everyone in my life either made fun of it or with my mom who thinks that the disease is fake for the sleep clinic to make money. Everyone in my life disregards it since I am so skinny and they think it is only a disease people who are bigger can have. The reason I haven't used it is because of the lack of support really and the fact that it is very hard to fall asleep with the mask as i feel like I barely get any oxygen with it on (my pressure setting is at 6 or ramped starting at 5), it used to be 4 but then they changed it to the current settings as they said this might help.
But I'm making this post as I have set my mind that tonight, no matter what, I will keep this damn mask on for a full nights sleep, I've turned off all my alarms and am determined as hell to finally sleep with it and I don't want to disappoint any of you guys. Hopefully tomorrow morning I'll be able to tell all you guys when I wake up, I did it, i kept it on. Goodnight everyone cyu in the morniing
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Please update the mask and machine in your profile....Be sure you have the specific Dream Station machine. Also it would help to know your pressure settings.
_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
Mask: Fisher & Paykel Vitera Full Face Mask with Headgear (S, M, or L Cushion) |
Additional Comments: Back up is S9 Autoset...... |
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- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Hey, I'm pretty sure I already had updated that stuff on my profile when I made it and I think I posted the pressure settings in the post? I might be wrong though so let me know and I'll do it in the morning, getting ready to sleep now
Thanks mate, goodnight!
Thanks mate, goodnight!
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Just so you don't feel alone-- I am thin and a small person, and have severe sleep apnea. Don't let anyone tell you it only occurs in overweight people.
_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear |
Additional Comments: CPAP 10 cmH20., User since 1/1/15. |
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
And be sure the machine's located below the level of your head so that humidifier water goes back to it, rather than into your face.
_________________
Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
Humidifier: IntelliPAP Integrated Heated Humidifier |
- Miss Emerita
- Posts: 3489
- Joined: Sun Nov 04, 2018 8:07 pm
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Coopbosses, you are most certainly among supporters here! It is painful to read about the reactions of the people you know. Would it help them to read information from a trusted source, perhaps like this:
https://my.clevelandclinic.org/health/d ... leep-apnea
I'm not overweight myself, and I have moderate apnea. It's a condition that may be more prevalent in some demographics than others, but it can be found in any subgroup of people. And it has bad effects, not only day to day, but also on your long-term health.
I think it's really impressive you have taken such an active role in your health care: putting clues together, recording yourself at night, getting that sleep study, and now working on getting your treatment up and running.
There's an additional step you could take, if you have access to a laptop or desktop computer. That would be to download the free Oscar software and import data from your machine's SD card. (You can get a cheap one if you don't have one in there.) Does this sound like a step you might take? Here's a link:
https://www.sleepfiles.com/OSCAR/
Tell us how it went last night. We might be able to offer some suggestions for accelerating your adaptation. Meanwhile, hang in there!
https://my.clevelandclinic.org/health/d ... leep-apnea
I'm not overweight myself, and I have moderate apnea. It's a condition that may be more prevalent in some demographics than others, but it can be found in any subgroup of people. And it has bad effects, not only day to day, but also on your long-term health.
I think it's really impressive you have taken such an active role in your health care: putting clues together, recording yourself at night, getting that sleep study, and now working on getting your treatment up and running.
There's an additional step you could take, if you have access to a laptop or desktop computer. That would be to download the free Oscar software and import data from your machine's SD card. (You can get a cheap one if you don't have one in there.) Does this sound like a step you might take? Here's a link:
https://www.sleepfiles.com/OSCAR/
Tell us how it went last night. We might be able to offer some suggestions for accelerating your adaptation. Meanwhile, hang in there!
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Mask: Bleep DreamPort CPAP Mask Solution |
Oscar software is available at https://www.sleepfiles.com/OSCAR/
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Unfortunately, I am not experienced enough to help you. But I want to encourage you to stick with it because you absolutely have come to the right place. There are a number of people here who WILL be able to help you. As Miss Emerita said, an important step will be to download OSCAR so they can see the information from your machine and help you adjust your settings. It may take a little time, because you can just change things willy-nilly, every night, but you will get there!
Good luck!
Good luck!
_________________
Machine: AirSense 11 Autoset |
Mask: Bleep DreamPort CPAP Mask Solution |
Additional Comments: AirMini for travel, with Eclipse/Halos. OSCAR software. |
Mask: Bleep Eclipse/Halos
Machine: ResMed AirSense 11 AutoSet
Machine: ResMed AirSense 11 AutoSet
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- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Oh thank you I didn't know that, I normally like to sleep on a mattress on the floor out of personal preference, so I'm at the same level as the machine so that explains a lot. I'll try changing it
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- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Hey all!
Thanks for all the replies it was really nice to read
I just woke up around half an hour ago and I'm so happy to say, after months of not being able tom I finally was able to keep it on during a nights sleep, the machine stats say the 1-Day was 8.1 therapy hours.
I think the main reason I kept it on for the first time was because I made the post and didn't want to disappoint anyone or myself, even though it was very hard to sleep with it I'm surprised I did.
I think I fell asleep at around 11:30ish and woke up at around 5:40amish. I honestly don't feel like I slept that much and when I woke up I thought I had only slept like an hour, I kept the mask on for a little while before trying to sleep.
Energy wise I still feel kind of the same level, but I guess I'm not too sure at this point since I only woke up like 20 minutes ago. But I'll definitely text my sleep specialist and let them know I finally fell asleep with it and see what they say.
Thanks to everyone who read or replied, it means a lot and is definitely the encouraging factor to why I finally successfully used it.
I'll keep everyone updated tomorrow morning after the second use, hopefully I can sleep better with it the next sleep, but tonight is a HUGE stepping stone!
Thanks for all the replies it was really nice to read
I just woke up around half an hour ago and I'm so happy to say, after months of not being able tom I finally was able to keep it on during a nights sleep, the machine stats say the 1-Day was 8.1 therapy hours.
I think the main reason I kept it on for the first time was because I made the post and didn't want to disappoint anyone or myself, even though it was very hard to sleep with it I'm surprised I did.
I think I fell asleep at around 11:30ish and woke up at around 5:40amish. I honestly don't feel like I slept that much and when I woke up I thought I had only slept like an hour, I kept the mask on for a little while before trying to sleep.
Energy wise I still feel kind of the same level, but I guess I'm not too sure at this point since I only woke up like 20 minutes ago. But I'll definitely text my sleep specialist and let them know I finally fell asleep with it and see what they say.
Thanks to everyone who read or replied, it means a lot and is definitely the encouraging factor to why I finally successfully used it.
I'll keep everyone updated tomorrow morning after the second use, hopefully I can sleep better with it the next sleep, but tonight is a HUGE stepping stone!
-
- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Hi Miss Em, thank you so much for your kind words I really appreciate itMiss Emerita wrote: ↑Thu Jul 02, 2020 11:53 amCoopbosses, you are most certainly among supporters here! It is painful to read about the reactions of the people you know. Would it help them to read information from a trusted source, perhaps like this:
https://my.clevelandclinic.org/health/d ... leep-apnea
I'm not overweight myself, and I have moderate apnea. It's a condition that may be more prevalent in some demographics than others, but it can be found in any subgroup of people. And it has bad effects, not only day to day, but also on your long-term health.
I think it's really impressive you have taken such an active role in your health care: putting clues together, recording yourself at night, getting that sleep study, and now working on getting your treatment up and running.
There's an additional step you could take, if you have access to a laptop or desktop computer. That would be to download the free Oscar software and import data from your machine's SD card. (You can get a cheap one if you don't have one in there.) Does this sound like a step you might take? Here's a link:
https://www.sleepfiles.com/OSCAR/
Tell us how it went last night. We might be able to offer some suggestions for accelerating your adaptation. Meanwhile, hang in there!
I'll definitely look into OSCAR this afternoon, I left an update on the post below and it's kind of good news!
Thank you again, I'll set this all up before tonights sleep and reply again.
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- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Thank you! Yes, I will definitely look into that before sleeping tonight and get my bearings with itbooksfan wrote: ↑Thu Jul 02, 2020 12:38 pmUnfortunately, I am not experienced enough to help you. But I want to encourage you to stick with it because you absolutely have come to the right place. There are a number of people here who WILL be able to help you. As Miss Emerita said, an important step will be to download OSCAR so they can see the information from your machine and help you adjust your settings. It may take a little time, because you can just change things willy-nilly, every night, but you will get there!
Good luck!
-
- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Thank you for the reply, it's nice to know theres others like me haha
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
YAY! Congratulations on your first full night sleeping with your CPAP! Here's hoping you are over the initial hump and things continue to improve!coopbosses wrote: ↑Thu Jul 02, 2020 4:07 pmHey all!
Thanks for all the replies it was really nice to read
I just woke up around half an hour ago and I'm so happy to say, after months of not being able tom I finally was able to keep it on during a nights sleep, the machine stats say the 1-Day was 8.1 therapy hours.
I think the main reason I kept it on for the first time was because I made the post and didn't want to disappoint anyone or myself, even though it was very hard to sleep with it I'm surprised I did.
I think I fell asleep at around 11:30ish and woke up at around 5:40amish. I honestly don't feel like I slept that much and when I woke up I thought I had only slept like an hour, I kept the mask on for a little while before trying to sleep.
Energy wise I still feel kind of the same level, but I guess I'm not too sure at this point since I only woke up like 20 minutes ago. But I'll definitely text my sleep specialist and let them know I finally fell asleep with it and see what they say.
Thanks to everyone who read or replied, it means a lot and is definitely the encouraging factor to why I finally successfully used it.
I'll keep everyone updated tomorrow morning after the second use, hopefully I can sleep better with it the next sleep, but tonight is a HUGE stepping stone!
_________________
Machine: AirSense 11 Autoset |
Mask: Bleep DreamPort CPAP Mask Solution |
Additional Comments: AirMini for travel, with Eclipse/Halos. OSCAR software. |
Mask: Bleep Eclipse/Halos
Machine: ResMed AirSense 11 AutoSet
Machine: ResMed AirSense 11 AutoSet
-
- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
Hi Em, I downloaded the OSCAR software as you suggested and loaded the data from the SD card, with the data it is only valid from around 11:20pm to 5:42am since I had the mask on for a couple hours before falling asleep. How does the data look? All the hypopneas by the way are from before falling asleepMiss Emerita wrote: ↑Thu Jul 02, 2020 11:53 amCoopbosses, you are most certainly among supporters here! It is painful to read about the reactions of the people you know. Would it help them to read information from a trusted source, perhaps like this:
https://my.clevelandclinic.org/health/d ... leep-apnea
I'm not overweight myself, and I have moderate apnea. It's a condition that may be more prevalent in some demographics than others, but it can be found in any subgroup of people. And it has bad effects, not only day to day, but also on your long-term health.
I think it's really impressive you have taken such an active role in your health care: putting clues together, recording yourself at night, getting that sleep study, and now working on getting your treatment up and running.
There's an additional step you could take, if you have access to a laptop or desktop computer. That would be to download the free Oscar software and import data from your machine's SD card. (You can get a cheap one if you don't have one in there.) Does this sound like a step you might take? Here's a link:
https://www.sleepfiles.com/OSCAR/
Tell us how it went last night. We might be able to offer some suggestions for accelerating your adaptation. Meanwhile, hang in there!
-
- Posts: 35
- Joined: Thu Jul 02, 2020 7:37 am
Re: 19 Year Old Diagnosed Months Ago And Struggling A LOT
For some reason the image only loads / opens if you right click on where it says Image and click open image in a new tabcoopbosses wrote: ↑Fri Jul 03, 2020 3:57 amHi Em, I downloaded the OSCAR software as you suggested and loaded the data from the SD card, with the data it is only valid from around 11:20pm to 5:42am since I had the mask on for a couple hours before falling asleep. How does the data look? All the hypopneas by the way are from before falling asleepMiss Emerita wrote: ↑Thu Jul 02, 2020 11:53 amCoopbosses, you are most certainly among supporters here! It is painful to read about the reactions of the people you know. Would it help them to read information from a trusted source, perhaps like this:
https://my.clevelandclinic.org/health/d ... leep-apnea
I'm not overweight myself, and I have moderate apnea. It's a condition that may be more prevalent in some demographics than others, but it can be found in any subgroup of people. And it has bad effects, not only day to day, but also on your long-term health.
I think it's really impressive you have taken such an active role in your health care: putting clues together, recording yourself at night, getting that sleep study, and now working on getting your treatment up and running.
There's an additional step you could take, if you have access to a laptop or desktop computer. That would be to download the free Oscar software and import data from your machine's SD card. (You can get a cheap one if you don't have one in there.) Does this sound like a step you might take? Here's a link:
https://www.sleepfiles.com/OSCAR/
Tell us how it went last night. We might be able to offer some suggestions for accelerating your adaptation. Meanwhile, hang in there!