Re: Self Titration
Posted: Wed Jul 19, 2023 11:06 pm
Okay, I will raise it to 9.
Page 3 of 4
Re: Self Titration
Posted: Thu Jul 20, 2023 7:47 am
This will be an interesting thread to follow. It will show what happens when somebody with poor sleep and no sleep-disordered breathing decides to DW CPAP.
Re: Self Titration
Posted: Thu Jul 20, 2023 8:05 am
Re: Self Titration
Posted: Thu Jul 20, 2023 2:10 pm
Test
Re: Self Titration
Posted: Thu Jul 20, 2023 2:23 pm
Re: Self Titration
Posted: Thu Jul 20, 2023 2:50 pm
Re: Self Titration
Posted: Thu Jul 20, 2023 4:11 pm
Hello Dread,
While I’m not the expert that many of those previously commenting are, I have had experience with navigating a complex medical system when you are a complex patient who may not fit neatly into a box so hopefully my thoughts may be of some help.
My suggestions to you are:
#1 Providing fuller detail about your medical history would be helpful.
-You mention multiple upcoming appointments with many specialists, what are the reasons you’ve been referred to so many specialists?
-Scoliosis was mentioned, could pain or pain meds be a factor contributing to your poor sleep?
-Your chosen user name “Dread” speaks volumes to me, any history of depression or other mental health issues?
-Any other medical issues or meds that could be a factor?
#2 Step back, take a deep breath and try to stick to one plan for at minimum of 2-3 days. Sounds like your sleep study didn’t show you had significant sleep apnea but like a number of people on this forum your sleep is such a mess that your willing to give CPAP a try to see if it helps, and I can respect that. A possible problem I see is that you’re also getting conflicting advice from people in other forums.
A few hours of barely using the machine isn’t enough to provide a good picture, if I were in your shoes and wanted to give the cpap a trail run I would set it to Palerider’s suggestion and keep it there for 2-3 days without looking at the data or making any changes. Alternatively if you trust the folks at ApneaBoard, set it to the settings they advise and try that for a couple of days.
After sticking with a program for a few days post a few charts for review.
I hope cpap helps you find a restful nights sleep, and if not hope all your docs can figure out a way to get you there. Good luck and sweet dreams!
While I’m not the expert that many of those previously commenting are, I have had experience with navigating a complex medical system when you are a complex patient who may not fit neatly into a box so hopefully my thoughts may be of some help.
My suggestions to you are:
#1 Providing fuller detail about your medical history would be helpful.
-You mention multiple upcoming appointments with many specialists, what are the reasons you’ve been referred to so many specialists?
-Scoliosis was mentioned, could pain or pain meds be a factor contributing to your poor sleep?
-Your chosen user name “Dread” speaks volumes to me, any history of depression or other mental health issues?
-Any other medical issues or meds that could be a factor?
#2 Step back, take a deep breath and try to stick to one plan for at minimum of 2-3 days. Sounds like your sleep study didn’t show you had significant sleep apnea but like a number of people on this forum your sleep is such a mess that your willing to give CPAP a try to see if it helps, and I can respect that. A possible problem I see is that you’re also getting conflicting advice from people in other forums.
A few hours of barely using the machine isn’t enough to provide a good picture, if I were in your shoes and wanted to give the cpap a trail run I would set it to Palerider’s suggestion and keep it there for 2-3 days without looking at the data or making any changes. Alternatively if you trust the folks at ApneaBoard, set it to the settings they advise and try that for a couple of days.
After sticking with a program for a few days post a few charts for review.
I hope cpap helps you find a restful nights sleep, and if not hope all your docs can figure out a way to get you there. Good luck and sweet dreams!
Re: Self Titration
Posted: Thu Jul 20, 2023 4:26 pm
colomom wrote: ↑Thu Jul 20, 2023 4:11 pmHello Dread,
While I’m not the expert that many of those previously commenting are, I have had experience with navigating a complex medical system when you are a complex patient who may not fit neatly into a box so hopefully my thoughts may be of some help.
My suggestions to you are:
#1 Providing fuller detail about your medical history would be helpful.
-You mention multiple upcoming appointments with many specialists, what are the reasons you’ve been referred to so many specialists?
-Marfan’s Syndrome. Im awaiting genetic testing but my doctor suspects I may test positive and could be a lung issue. However X-rays of my lungs showed perfect lungs. The leading cause of death for Marfan’s is bad lungs or aortic valve failure.
-Scoliosis was mentioned, could pain or pain meds be a factor contributing to your poor sleep?
I’ve completely stopped all meds for weeks and still having issues. I only started having breathing difficulties after a dose of 5mg Norco or Hydrocodone and 300mg Gabapentin
-Your chosen user name “Dread” speaks volumes to me, any history of depression or other mental health issues?
Depression, but doesn’t help I’m going through a lot.
-Any other medical issues or meds that could be a factor?
#2 Step back, take a deep breath and try to stick to one plan for at minimum of 2-3 days. Sounds like your sleep study didn’t show you had significant sleep apnea but like a number of people on this forum your sleep is such a mess that your willing to give CPAP a try to see if it helps, and I can respect that. A possible problem I see is that you’re also getting conflicting advice from people in other forums.
A few hours of barely using the machine isn’t enough to provide a good picture, if I were in your shoes and wanted to give the cpap a trail run I would set it to Palerider’s suggestion and keep it there for 2-3 days without looking at the data or making any changes. Alternatively if you trust the folks at ApneaBoard, set it to the settings they advise and try that for a couple of days.
After sticking with a program for a few days post a few charts for review.
I hope cpap helps you find a restful nights sleep, and if not hope all your docs can figure out a way to get you there. Good luck and sweet dreams!
Re: Self Tiltration
Posted: Thu Jul 20, 2023 5:56 pm
Re: Self Titration
Posted: Thu Jul 20, 2023 6:48 pm
I can relate. My son was strongly suspected of having Marfan’s, turned out he actually has EDS which we later learned he inherited from meDread wrote: ↑Thu Jul 20, 2023 4:26 pm-Marfan’s Syndrome. Im awaiting genetic testing but my doctor suspects I may test positive and could be a lung issue. However X-rays of my lungs showed perfect lungs. The leading cause of death for Marfan’s is bad lungs or aortic valve failure…Depression, but doesn’t help I’m going through a lot.
The doctor might suspect you have Marfans, but that doesn’t mean you have it
It’s scary when a doctor suggests something like Marfans and it’s understandable that you’re worrying about heart and lung issues.
I’m not surprised that you’re feeling anxious and depressed, it’s a lot to deal with complex medical issues and physical pain while visiting a sea of of doctors who neither have the time or knowledge to wade through rare complex medical problems.
I hope you’re seeing a geneticist with knowledge of connective tissue disorders and the doctor ordered a full connective tissue genetic panel.
Hope you find some answers and are soon able to find a good nights sleep!
Re: Self Titration
Posted: Thu Jul 20, 2023 6:53 pm
Thank you. Also palerider. Would you recommend setting pressure straight to 20 for max, and then I slowly go from 6 to 6.4 to 6.8, and then I was wondering about start pressure?
Re: Self Titration
Posted: Thu Jul 20, 2023 7:20 pm
Thank you, it doesn’t help that my dad also passed away so income and insurance is a nightmare/colomom wrote: ↑Thu Jul 20, 2023 6:48 pmI can relate. My son was strongly suspected of having Marfan’s, turned out he actually has EDS which we later learned he inherited from meDread wrote: ↑Thu Jul 20, 2023 4:26 pm-Marfan’s Syndrome. Im awaiting genetic testing but my doctor suspects I may test positive and could be a lung issue. However X-rays of my lungs showed perfect lungs. The leading cause of death for Marfan’s is bad lungs or aortic valve failure…Depression, but doesn’t help I’m going through a lot.
The doctor might suspect you have Marfans, but that doesn’t mean you have it
It’s scary when a doctor suggests something like Marfans and it’s understandable that you’re worrying about heart and lung issues.
I’m not surprised that you’re feeling anxious and depressed, it’s a lot to deal with complex medical issues and physical pain while visiting a sea of of doctors who neither have the time or knowledge to wade through rare complex medical problems.
I hope you’re seeing a geneticist with knowledge of connective tissue disorders and the doctor ordered a full connective tissue genetic panel.
Hope you find some answers and are soon able to find a good nights sleep!
Re: Self Titration
Posted: Fri Jul 21, 2023 7:56 am
Re: Self Titration
Posted: Fri Jul 21, 2023 8:29 am
Hope you have a counselor or someone you trust to talk to. Financial worries, chronic health issues, the passing of your father; that would make anyone depressed.
Hope you feel more well rested this morning!
Re: Self Titration
Posted: Sun Jul 23, 2023 4:59 pm
Here are my latest OSCAR charts from a few days, neatly organized. I haven’t touched the APAP, until guidance because I’m nervous I’ll make the TECSA worse.[img] https://imgur.com/a/793D0qD [img]. The second image is shorter time, I assume first will be more help.