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+--- Thread: So Happy!! (/Thread-So-Happy)
So Happy!! - Bjjpapi - 11-11-2019
I can't believe I've spent my entire life, it would seem, half awake. I didn't have a clue until I got sick for 3 or 4 days back in February 2016. I must've slept for 3 or four days straight and only got up to eat, very little, drink water and use the bathroom. I also went to urgent care and got antibiotics for possible strep (came back negative) and took the first day's dose. When I woke up the following day I felt AMAZING!!! I felt like a million bucks, like never before...but strangely this felt "normal". I immediately knew this is how I was supposed to feel. I tried to figure out what caused the change i.e. diet, antibiotics, sleep etc... I tried every diet known to man, ordered antibiotics and antifungals online, learned about every common and rare disease that could explain my symptoms ( I've done sooo much reading I could be a doctor).
Finally after trying out testosterone replacement therapy and recommending it to a friend, with similar symptoms, he came back from his doctor and recommended a sleep study. His doctor acknowledged that my friend's testosterone was low but wanted him to do a sleep study first. My friend came back telling me he felt amazing after the sleep study. I started learning about sleep study and it explained most if not every symptom I had. My symptoms had also gotten worse after gaining 25 pounds during the first 4 weeks of testosterone (high blood pressure, high cholesterol, more snoring, poor memory, poor concentration, you name it!!).
So my doctor had me do two take home sleep studies (pulse oximetry, heart rate and pulse oximetry, heart rate, respiratory rate, apnea events and body position) and told me I have moderate sleep apnea. He failed to give me any specifics (I'll ask next time I see him) and scheduled me for an in lab sleep study. The in lab Sleep study turned out to be a titration study only. I wasn't pleased but it is what it is. The sleep tech told me I slept, that's all she could share. my doctor had previously told me that he guessed i'd be on CPAP at a pressure of 12.
my mother has sleep apnea and doesn't use her machine, I'll have to get her back on it, but in the meantime I borrowed it to see how I would do. After using it for the past couple of nights (only getting ~3-4 hours per night) I felt pretty good waking up this morning. I can't wait to see what 8 hours of sleep will feel like, can't wait to help my mother with her therapy, can't wait for my machine!!
here is last night's sleep chart, I fell asleep shortly before 1 am and woke up at 415 (snooze) then got out of bed just before 430 . Most of the flagged events are while i was awake wearing the mask. please let me know if you have any advice. thank you all sooooo much!!
RE: So Happy!! - 70sSanO - 11-11-2019
Congrats on getting at least some therapy. Read about what you should do before getting a machine (sticky). Personally I would try to get an APAP machine since you can still run it as a CPAP.
John
RE: So Happy!! - Bjjpapi - 11-11-2019
I've read a ton here, on other forums, and all around the web...I do know I have tons more to go. I am waiting for my prescription to get a machine but had to try out my mother's in the meantime. feeling bad for so many years and waiting for a treatment that may help but is delayed, possibly for months ( according to my pulmonologist based on his experience with insurance companies), wasn't something I was willing to do. I understood the risk vs reward. I don't say any of this in a bad way, I was just so desperate, specially this past year. my world was collapsing around me, I was depressed for months (never been before) and didn't know what else to do or try.
I never looked into sleep because I figured to replicate that previous experience I would have to sleep for 3-4 days straight pretty much...I don't think I can do that voluntarily, lol. I had never been told I snore or gasp for air during sleep but testosterone replacement changed that. that's one of the few positives from that, it also helped a bit with the depression I was going through. My pulmonologist had me seeing him every week for the past 2 1/2 months and I had to wait weeks to do the take home oximetry and other take home "sleep study". only after insisting I would not do a take home CPAP machine for a titration test did he schedule me for an in lab sleep study. he supposedly gets the results in ten days...life is passing me by in the meantime, big test for recertification at work in a couple of days, I had to do something.
I know most will hesitate giving advice, hopefully only until I get my own prescription and machine...I understand. What's funny is that I'm a Paramedic and put people on CPAP all the time!! This also helps me understand the risk vs rewards aspect of things. I don't advocate anyone else doing what I did, going through your doctor is always the best and safest choice.
thanks for the advice John,
Jose
RE: So Happy!! - Melman - 11-11-2019
I strongly recommend you get a Resmed Airsense 10 Autoset. As was pointed out above, and APAP can be used at constant pressure as a CPAP, if necessary. If your covered by insurance it should cost no more. The Dreamstation is also a good machine but most do better using the Resmed. The Resmed auto algorithms are sensitive to flow limitation, hypopnea and snores so the machine ncreases pressure quickly before an obstructive apnea occurs. By comparison, the Dreamstation is slower to increase pressure, and tends to reduce pressure too quickly, allowing more obstructive apnea and hypopnea to occur.
In addition to the better preventive pressure algorithm, the Resmed uses exhale pressure relief (EPR) which is a true bilevel pressure with up to 3 cm pressure difference between inhale and exhale. Philips machines use CFlex, CFlex Plus or AFlex which provides pressure adjustment as respiration cycles to exhale and triggers inhale, but it tends to be poorly timed for people with flow limitation.
RE: So Happy!! - Dormeo - 11-11-2019
Welcome, Bjjpapi!
.I second Melman’s recommendation of a ResMed Airsense 10 Autoset, and while you’re at it, might as well get the For Her version. It does some extra tricks (nothing to do with sex or gender, I think their marketing people are nuts).
I had home “titration” with a Philips Respironics machine, and I always felt it was trying to hustle me into inhaling before I was ready. My keeper machine was a ResMed, and it follows my lead beautifully.
You should probably ask for copies of your sleep studies. You have a right to have them, and sometimes the experts learn something important by taking a look at them.
It’s great you’re raring to go. I hope everything is smooth as silk. Keep us posted, would you?
RE: So Happy!! - Hydrangea - 11-12-2019
Hooray! Way to go!!!!
I feel similarly enthusiastic about finally getting restful sleep due to CPAP!
RE: So Happy!! - Bjjpapi - 11-12-2019
I'm super excited!!
I've been watching craigslist for the past week to see if anything worthwhile popped up. Today I went on offerup and found a RESMED AirSense 10 Autoset (for her) not too far from me that had been listed a month ago. they had it listed as new, with humidifier, Climateline, SD card nasal cushion mask and 6 new cushions for $500. I offered $350 because I wasn't sure if it was new, no warranty etc... They took the offer!!! the Machine ended up having 10 hrs, between 7-8 looked like actual use on the SD card.
I'm currently cleaning/disinfecting everything.
I feel I did best with the dreamstation when it was set to CFLEX (2) and fixed at 11.5
I'm sure I'll appreciate the climate line because last night I think I experienced some rainout due to the initial humidity setting on the dreamstation and the temperature of my room.
any advice on what numbers to set the machine up for use tonight is greatly appreciated. I was thinking about leaving it the way it was set with minimum at 5 and max of fifteen with EPR of 1, but was afraid of not getting enough pressure. I'm guessing that's what the "auto" in auto set is for.
here's my chart from last night
from last night, I used EZ start ( I think that's the name) and started with a pressure of 9.5 and Cflex+ at 3, that didn't go so well, plus rain out. at 5 or 6 I got to sleep again with a fixed pressure of 11.5 and Flex at 2 or 3, that worked out much better. I'm not sure why the pressure didn't go up with my initial settings last night. I can't wait for better sleep tonight with the Autoset!!
RE: So Happy!! - WillSleep - 11-12-2019
(11-12-2019, 03:30 PM)Bjjpapi Wrote: I feel I did best with the dreamstation when it was set to CFLEX (2) and fixed at 11.5
I'm sure I'll appreciate the climate line because last night I think I experienced some rainout due to the initial humidity setting on the dreamstation and the temperature of my room.
any advice on what numbers to set the machine up for use tonight is greatly appreciated. I was thinking about leaving it the way it was set with minimum at 5 and max of fifteen with EPR of 1, but was afraid of not getting enough pressure. I'm guessing that's what the "auto" in auto set is for.
Congrats on finding a new machine.
The first thing that comes to mind is ... You have two choices.
1. If you want to find out all the Autoset has to offer you I would follow something close the ResMed BiPAP titration process, making one change a night or several times a night if the setting is clearly too low and is causing you to not be able to sleep. See the wiki links on optimizing therapy.
http://www.apneaboard.com/wiki/index.php?title=Optimizing_therapy
http://www.apneaboard.com/wiki/index.php?title=Optimizing_therapy#BiPAP.2FBiLevel_Titration_Protocol
2. You could play it safer and configure the Autoset to Pressure to 2 cmH20 lower than you have been using and set EPR to 2.
WillSleep
RE: So Happy!! - jaswilliams - 11-12-2019
If it was me I would set EPR to 3 min pressure to 7 and set the max to 20 and see how the night goes. A Resmed machine increases pressure more rapidly than a Philips and should do so before you get events. Try it and see
RE: So Happy!! - Gideon - 11-12-2019
(11-12-2019, 04:45 PM)jaswilliams Wrote: If it was me I would set EPR to 3 min pressure to 7 and set the max to 20 and see how the night goes. A Resmed machine increases pressure more rapidly than a Philips and should do so before you get events. Try it and see
This is what I would do with the intent of a change tomorrow night.
Also add the Flow Limit chart, it is a fairly important chart that the PR machine does not have.