12-05-2017, 04:45 PM
(This post was last modified: 12-05-2017, 04:46 PM by Walla Walla.)
RE: Kiwii's Search for Restful Sleep
If you drop the pressure to 7cm I don't think it would hurt anything. You don't have to change the IPAP. You can put it back to 8cm if it doesn't work out. As far as the mask you should use the one that works best for you.
RE: Kiwii's Search for Restful Sleep
If you found a setting that works for you I would leave it, but I remember you have a hot head doctor.
Put it back if it will please the doctor, but if he reads the data he will see you have changed the settings anyway.
Hope you are feeling rested now and things are going better?
I think I read over the page you had a good night.
I am NOT a doctor. I try to help, but do not take what I say as medical advice.
Every journey, however large or small starts with the first step.
12-05-2017, 09:44 PM
(This post was last modified: 12-06-2017, 11:02 AM by kiwii.)
RE: Kiwii's Search for Restful Sleep
Thanks guys!
Yes, I am doing much better today, thank you. What a difference a good night makes! I don't know if it was the change of mask - it *was* an incredibly low leak rate - or the change of trigger & cycle, or combination, or just the luck of a random night, but I'll take whatever I can get! I'm still a bit muzzy-headed, but that's a huge improvement.
I won't be seeing that doctor again.
RE: Kiwii's Search for Restful Sleep
I don't think adjustments to trigger, cycle and Ti will show up in any of the reports, and very few doctors are even aware of those. So not to worry. Continued success and good sleep!
RE: Kiwii's Search for Restful Sleep
Umm... so Dr. 2 called and it was like talking to an entirely different person. He basically gave me the go-ahead to reduce within certain parameters and evaluate the results. I was so surprised that I could barely process what he was saying. He even asked me what I thought of my pressures. 
RE: Kiwii's Search for Restful Sleep
Great you are now in control of your own treatment take it slow and tweak monitor fir a few days and see how you feel.
RE: Kiwii's Search for Restful Sleep
(12-06-2017, 08:13 PM)kiwii Wrote: Umm... so Dr. 2 called and it was like talking to an entirely different person. He basically gave me the go-ahead to reduce within certain parameters and evaluate the results. I was so surprised that I could barely process what he was saying. He even asked me what I thought of my pressures.
Dr2 was having an off day 
I am NOT a doctor. I try to help, but do not take what I say as medical advice.
Every journey, however large or small starts with the first step.
RE: Kiwii's Search for Restful Sleep
Pulmonologist thought I should have back up and also supplemental oxygen. Sent me to Sleep Doctor #3 (also has a neurology practice). Btw, my neurologist is also with this same group and Sleep Dr #2 is the director of their sleep center.
I wound up keeping the appointment with Dr #2 last week (or whenever). I thought he would be looking at my data from the elapsed time since last we'd spoken, but no. Apparently he hadn't even looked at my chart before walking in, as he was unaware that he'd asked me to try lower settings. blah blah.. whatever.
Meanwhile, I'd set up the appointment with the pulmonologist ultimately hoping that he might take over monitoring the xpap (but we did not discuss that). It was clear that he was referring me to a sleep doctor in their group to actually evaluate and make decisions on his suggestions. Which is fine. I like him a lot. He was thorough, asked lots of insightful questions, and listened to the answers, further refining his questioning. I was asking about 2 issues - the weird breathing thing, and asthma (which I guess is also weird because I cough instead of wheeze). It was a very successful and productive visit. Most importantly, I was perfectly at-ease with him. No ptsd stuff. At. All. He said that he would send a write up to Dr. 3 regarding the oxygen and stuff.
Sleep doctor #3 happened to have a cancellation for the next day. It didn't occur to me that Dr. Pulmonologist might need time to write something up (didn't even think of it), and in the stress of the office visit, I completely forgot to ask about the supplemental oxygen and Dr 3 didn't mention it, so I don't even know if she'd heard about it from Dr. P. But I've jumped ahead...
So, we had to wait quite awhile in the waiting room, but Dr. 3 did apologize for that. She was very nice, warm, and intelligent, and spoke in an easy-to-understand manner. No displays of authoritarianism or putting me on the defensive for having bought my own bi-level (unlike Dr 2). I didn't do very well though. She asked questions (of course) and when it came to my settings, and how they came to be, I wound up getting myself upset. I'm not good at condensing information unless I've had the presence of mind to prepare for it. She did look at my data, and she did approve of my settings.
Anyway, she wants me to have an overnight study for an ST. Like I said, I forgot to ask about supplemental oxygen so I do not know her opinion on that. I expect that I'll eventually be able to do the sleep study, but the question is when. The triggering event was like being there. I've never had that before. Normally the feelings are so far away that it could have happened to someone else, not me. I don't know how long it will take to recover from it.
Family members have offered to be there overnight with me (and she was very encouraging of this), but I cannot rely on someone else to be vigilant enough to 'keep me safe.' It is not like the swimming pool incident was the only life-threatening event that occurred, and there were years and years of trauma. How does one overcome a pretty-much lifelong need to protect themselves from other people?
I've sent Dr 3 a message to ask how they handle veterans with ptsd. They must have to do something to be able to relax their guard and sleep.
RE: Kiwii's Search for Restful Sleep
WOW! kiwii, this reads like a soap opera or something like it. At least you are getting treated, which is obviously a good thing.
BTW while reading your post, I had an odd flashback to the 1980's with MTV playing The Thompson Twins song "Doctor Doctor".
Mask Primer
Positional Apnea
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
01-26-2018, 09:58 PM
(This post was last modified: 01-26-2018, 10:28 PM by kiwii.)
RE: Kiwii's Search for Restful Sleep
Ahhhhh.. thanks for the laugh! 
Somehow the song that just now came to my mind is Aqua's, "Freaky Friday." Especially the part that says, "Freaky Friday, things ain't going my way. Every thing is wrong, my life is a country song."
It's pretty funny. If anyone is interested, Freaky Friday song
eta: I feel like I am between a rock and a hard place, and all of it is self-imposed. Or ptsd imposed. Whatever. Yeah, that song is pretty appropriate. I would quote another (funny) line from it, that is particularly fitting to this situation, but it may offend some folks.
I may have to just break down and contact my old therapist. He moved back to China, but said that I could contact him anytime that I'd like. I've felt too inhibited though, and do not want to impose or intrude into his life.
If I consult a new therapist, I would have to explain stuff and some of it is repressed. I am really loathe to open that can of worms.
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