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Anyone have a clue?.....
Two nights ago I slept 8 hours on CPAP, first time. It was great! Next night I slept about 6 hours on CPAP. Less great but pretty good. Last night I hardly slept at ALL on CPAP.
I'm confused. Again. No alcohol, no caffeine, no food in the evening, same sleep routine. Not sick with side effects, not uncomfortable, etc., etc., etc.......the only thing I can think of is I fell asleep in my chair yesterday for a bit, no doubt in response to only 6 hours the night before.
Does this sound familiar to anyone? I'm baffled.
Susan McCord
I'm confused. Again. No alcohol, no caffeine, no food in the evening, same sleep routine. Not sick with side effects, not uncomfortable, etc., etc., etc.......the only thing I can think of is I fell asleep in my chair yesterday for a bit, no doubt in response to only 6 hours the night before.
Does this sound familiar to anyone? I'm baffled.
Susan McCord
Views: 46
Replies to This Discussion
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Permalink Reply by susan mccord on
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I don't think it's anxiety, Rock. Although you know, you've made me remember that yesterday I was working on the final draft from my attorney of ALL my advance directives, with my kids who are going to be POA and HCR. That's been a very intense process. Maybe THAT was still playing around in my mind.....I'm not anxious about it. Mostly what I am, besides the reality of it all, is that my younger son and his wife, are so willing to take on such a huge responsibility....I've been pretty emotional about all that.....maybe it's not exactly anxiety but high emotion yesterday that played into the no-sleep. If so, I certainly wasn't aware of it, but it makes sense now that you've made me think about it.....thank you. This is the kind of perspective that's so valuable to us on here. It's hard to adjust to, and manage PAP tx without all the associated life issues that accompany having a life-threatening illness. This is my second one in less than 4 years. Right now my mind is saying, "Well,....YEAH, Susan!!"
Susan McCord :-)
Rock Hinkle said:
eAnxiety..........Maybe?
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Patrick, why do you think the progress with this is so erratic? It just confounds me!! Just when I think I've gained some confidence in tx and in my ability to handle this, it seems as though I take a step backward....
Susan McCord
Patrick said:Susan,
When I first started I had good results with the machine, bu then after a week or so I had trouble using it, (but i used it faithfully) after a week of not sleeping well,it came back around and now I cant sleep well without it. Just hang in there and it will get better.
Patrick
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Permalink Reply by RockRpsgt on
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It adds years to your life. Something with that benefit does not seem like it should be easy.
susan mccord said:Patrick, why do you think the progress with this is so erratic? It just confounds me!! Just when I think I've gained some confidence in tx and in my ability to handle this, it seems as though I take a step backward....
Susan McCord
Patrick said:Susan,
When I first started I had good results with the machine, bu then after a week or so I had trouble using it, (but i used it faithfully) after a week of not sleeping well,it came back around and now I cant sleep well without it. Just hang in there and it will get better.
Patrick
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Permalink Reply by Eric Thayer on
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One thing that I noticed was that if I don't loop my hose around the headboard a couple things happen. One is that I roll on top of it occasionally and its uncomfortable. The other is that it pulls on my mask and lets leaks blow into my eyes (waking me up). Getting the hose so that it is free to drape down w/o getting wound up/around anything has helped me out.
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No, it doesn't, Rock, when I step back and look at it objectively. I have to keep reminding myself that I've had undiagnosed sx for 35 years. I don't know why I expect an overnight turnaround. I'm just so tired of being tired.. it's totally not like me to have NO energy. It 's messing up my life in some major ways. But you're right, as usual. Thanks for the reality check....
McCord :-)
susan mccord said:Patrick, why do you think the progress with this is so erratic? It just confounds me!! Just when I think I've gained some confidence in tx and in my ability to handle this, it seems as though I take a step backward....
Susan McCord
Patrick said:Susan,
When I first started I had good results with the machine, bu then after a week or so I had trouble using it, (but i used it faithfully) after a week of not sleeping well,it came back around and now I cant sleep well without it. Just hang in there and it will get better.
Patrick
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Hi Patrick--for some reason I happened to re-visit this discussion just now. Wanted to thank you again for your support and am surprised it was only (3) weeks ago!! An update to you: you were right! I'm doing much better with CPAP by now! Have another mask which is much better. Finally got in to my new sleep doc. Am sleeping kinda better--seems to creep up minutes at a time, not hours, but I definitely have more energy and can process thoughts better. I'm certainly not feeling discouraged or resistant to treatment at this point, which is a HUGE step. You were a big part of encouraging me when I thought it was hopeless, and I truly thank you for that. Again!! How are YOU doing these days? Haven't seen your name pop up but then I may have just missed you.
Susan McCord :-)
Patrick said:Susan,
When I first started I had good results with the machine, bu then after a week or so I had trouble using it, (but i used it faithfully) after a week of not sleeping well,it came back around and now I cant sleep well without it. Just hang in there and it will get better.
Patrick
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Permalink Reply by Saz RPSGT on
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Hello Susan,
I very frequently hear this reported by patients. I don't know that anyone knows the "why" as to why this happens, just that it does happen! :^)
We're all baffled by this effect.
The key is to not get discouraged by it and keep using it. When people continue to use it they report what Patrick posted. This is the same point many CPAP users choose the other path and stop using it. I liken this to the hump people go over when trying to lose weight. There is that period when no weight comes off and actually sometimes goes up. Frustrating for sure, but it's very important to stay focused on your goals (of better sleep or....anything!).
Keep plugging away and good luck. Keep us posted!
Jason
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Hi Jason--it's good to hear from you again! For starters, I'm definitely committed to staying on CPAP. It HAS been slow and unpredictable progress for me, but ever since I watched Mike's "Hard to watch" video, I've never wavered. I'm up to 5 hours' predictable sleep, sometimes 6, occasionally 7 but not often. I can tell a small energy increase and a slight improvement with thought processing. So overall I think I'm making progress. Someone on here has talked often of "sleep debt" and when I stop to think I've had sx for 34-35 years, undiagnosed, I figure I've got a huge debt to pay back. So I'm just gonna be patient and keep going. I owe this attitude, clearly, to SG and all you guys who have continued to support me even back when I was being obnoxious and irrational!! Seriously, that's made all the difference in the world in keeping me in treatment. I wouldn't dream of going to bed without the (formerly) dreaded mask now....don't know if you've caught up with this yet, but I DID get into my sleep doc 9/1 and he spent an hour and 15 minutes with me. Very quiet, very thorough, very patient. I like him a lot and feel like I'm in good hands there as well. So, onward and upward.
BTW, I think your analogy to weight loss is VERY helpful. Hadn't considered that one, but it's a good fit for me. I'm happy to report I'm doing quite well in that regard. My weight's within normal limits. Working on stamina now, which seems to be a slow go--unfamiliar to me, but....it'll come, hopefully.
Thanks for your encouragement. Even now it means a lot. The last exchange you and I had, I think I was on your last nerve, and I apologize for that. It was NO kind of your problem, it was mine. You've been wonderful to me and it means a lot to see you come across my screen this a.m.
Susan McCord :-)
J. Sazama RPSGT said:Hello Susan,
I very frequently hear this reported by patients. I don't know that anyone knows the "why" as to why this happens, just that it does happen! :^)
We're all baffled by this effect.
The key is to not get discouraged by it and keep using it. When people continue to use it they report what Patrick posted. This is the same point many CPAP users choose the other path and stop using it. I liken this to the hump people go over when trying to lose weight. There is that period when no weight comes off and actually sometimes goes up. Frustrating for sure, but it's very important to stay focused on your goals (of better sleep or....anything!).
Keep plugging away and good luck. Keep us posted!
Jason
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Permalink Reply by Judy on
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On the anxiety bit over the POA and HCR, etc. At least in my case I don't think it was anxiety but it was concern for my daughter having to make the decision to follow my wishes. I HATE putting that load on her shoulders!!!
I have VERY STRONG feelings about end of life. I was fortunate, my father died unexpectedly, my step-father died unexpectedly, my oldest daughter was killed instantly. My poor mother on the other hand lived for several years knowing a benign tumor was destroying her mind. She ended up in a nursing home because I could not care for her but she still had enough mind to know what was going on. No one gave her credit for her slowed thought processes but my husband and I and a companion she had selected. It was a constant battle w/my older sister who had the "control" of mom's placement and disapproval of mom's choice of companion. In the end it fell upon my shoulders to "pull the plug". It fell on my shoulders to make the final decisions for my step-mother. When my brother-in-law suffered an AAA and died during surgery but was re-suscitated my husband couldn't make that decision to pull the plug. I finally had to.
I've made it clear to my family and my doctors when I can not live at home on my own w/o intervention, even if you have to walk thru tunnels of piled newspapers and all those stories you read about in the newspaper on occasion, I have NO INTENTION of rotting away in some nursing home. I WILL find a way OUT OF THIS WORLD before I will tolerate that. I have DNR orders on file w/my family doctor, at the hospital, etc., etc. W/having COPD my way out of this world will NOT be pleasant and before it gets to that point I WILL find a way out of this world. I make no secret of this. QUALITY of life is MORE IMPORTANT to ME than quantity.
I squandered the wonderful longevity genes I inherited from both sides of my family unfortunately w/my 50+ years of smoking. Despite my strong feelings on this subject which my husband is very much aware of I don't think he could follow thru on my wishes. He just is NOT one to give up. My son is several states away. My daughter is very reliable and responsible and very much aware of my wishes. BUT - I HATE the thought of laying the burden of the responsibility of following my wishes on her shoulders. I just have no one else that I trust to follow my wishes. My greatest fear is ending up in the hospital under the care of some doctor and hospital administration who feel they know better than what my wishes and instructions dictate.
My mom was sent from the nursing home to a Catholic hospital that had recently been involved in a refusal to do abortion issues so I was prepared to have to REALLY BATTLE to bring her home on Hospice care at the end. I was floored when they not only readily agreed to it, THEY SUGGESTED it, before I could broach the subject. At that Catholic hospital it was okay to pull the plug but NOT abort, regardless the reason. I am Catholic so that really caught me off-guard!!!!
Anyway, I'm not so sure it would be anxiety disturbing sleep so much as it is/was the mind being busy mulling over the subject and if the right decisions were made, if I/we covered all the angles, etc. Just the ole mind processing the issues, making sure nothig was forgotten.
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Permalink Reply by wallace j smith jr on
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the therapy needs to be the same for you for awhile , why the 6 hr night and then why not at all? couldnt tolerate it? or because you felt better you didnt use the machine? are you on a regimen as far as when you go to bed? all these things factor in to a good nights rest! you need a schedule when you go to bed and of course you know about the caffeine etc as you mentioned, is your mask falling off at night? is it leaking? how long have you been on the machine? you have a lot of variables unfortunately..and alll you can do is stick to it and things will work out i know it sounds strange and youve heard it before but it will come together with perseverance!!
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Judy, you and I are on exactly the same page about this. I will do the same rather than put my family and, frankly, myself through what I've seen happen many, many times, both personally and professionally.
Re: advance directives--I had POA and HCR drawn up by my attorney. I told her I wanted it ironclad in the language so there is no way ANYONE can challenge one single thing if it comes down to that. I wanted every i dotted and every t crossed so my kids would have NO DOUBT in their minds exactly what they should do. And so that no one could question them in any way. That's exactly what she put together. Both documents are absolutely ironclad--tight--nothing left for question whatsoever. I've seen, in my work, and with my mom, the disasters that can occur when plans are not in place. It can wreck families, destroy relationships, and worst of all (in my mind) cause the patient (me!) to suffer unnecessarily. Quality of life, baby--that's my mantra, just like you.
Susan McCord :-)
Judy said:On the anxiety bit over the POA and HCR, etc. At least in my case I don't think it was anxiety but it was concern for my daughter having to make the decision to follow my wishes. I HATE putting that load on her shoulders!!!
I have VERY STRONG feelings about end of life. I was fortunate, my father died unexpectedly, my step-father died unexpectedly, my oldest daughter was killed instantly. My poor mother on the other hand lived for several years knowing a benign tumor was destroying her mind. She ended up in a nursing home because I could not care for her but she still had enough mind to know what was going on. No one gave her credit for her slowed thought processes but my husband and I and a companion she had selected. It was a constant battle w/my older sister who had the "control" of mom's placement and disapproval of mom's choice of companion. In the end it fell upon my shoulders to "pull the plug". It fell on my shoulders to make the final decisions for my step-mother. When my brother-in-law suffered an AAA and died during surgery but was re-suscitated my husband couldn't make that decision to pull the plug. I finally had to.
I've made it clear to my family and my doctors when I can not live at home on my own w/o intervention, even if you have to walk thru tunnels of piled newspapers and all those stories you read about in the newspaper on occasion, I have NO INTENTION of rotting away in some nursing home. I WILL find a way OUT OF THIS WORLD before I will tolerate that. I have DNR orders on file w/my family doctor, at the hospital, etc., etc. W/having COPD my way out of this world will NOT be pleasant and before it gets to that point I WILL find a way out of this world. I make no secret of this. QUALITY of life is MORE IMPORTANT to ME than quantity.
I squandered the wonderful longevity genes I inherited from both sides of my family unfortunately w/my 50+ years of smoking. Despite my strong feelings on this subject which my husband is very much aware of I don't think he could follow thru on my wishes. He just is NOT one to give up. My son is several states away. My daughter is very reliable and responsible and very much aware of my wishes. BUT - I HATE the thought of laying the burden of the responsibility of following my wishes on her shoulders. I just have no one else that I trust to follow my wishes. My greatest fear is ending up in the hospital under the care of some doctor and hospital administration who feel they know better than what my wishes and instructions dictate.
My mom was sent from the nursing home to a Catholic hospital that had recently been involved in a refusal to do abortion issues so I was prepared to have to REALLY BATTLE to bring her home on Hospice care at the end. I was floored when they not only readily agreed to it, THEY SUGGESTED it, before I could broach the subject. At that Catholic hospital it was okay to pull the plug but NOT abort, regardless the reason. I am Catholic so that really caught me off-guard!!!!
Anyway, I'm not so sure it would be anxiety disturbing sleep so much as it is/was the mind being busy mulling over the subject and if the right decisions were made, if I/we covered all the angles, etc. Just the ole mind processing the issues, making sure nothig was forgotten.
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