OTB (just read your follow-up, Oh to Breathe)
Thank you for your interesting suggestions. I appreciate your taking the time to pass them along. I do have a mouthpiece that I ordered a few months ago, now that you mention it. My problem, however, doesn't really seem to be the amount of episodes I have per night, but perhaps that I might still have an oxygen desaturation issue. I have gotten a prescription faxed over to the DME today and will be in touch with him tomorrow to see about picking up an overnight pulse oximeter. If there is no problem with my oxygen, then I can clearly zero in on how I feel without therapy as far as energy level goes, without the worry that I could be creating a serious health problem with my blood.
Thank you for your interest and for taking the time to share your ideas with me. And best of luck to you with your therapy. I know what it feels like to get your energy back as a result and "lifeline" is very accurate a description. May you stay feeling well.
Very sad and confused-need advice
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Lori,
The best of luck in your trial. I hope it works out for you! And congratulations on the weight loss.
I also was a beanpole most of my life and also weighed 110 on my wedding day. Although not quite that thin after kids, I was a a comfortable weight. I have just gained 30 lbs in the last 2 years. Before that I had went down to 118...then we went on vacation and it was downhill from there. I think it is the age thing because I never used to gain weight no matter how much I ate. On the other hand, now that I have the facts, I'm sure that I have had sleep apnea even when I was thin. I had a snoring problem even at 118 lbs. Exercise helped to keep my energy up before CPAP and I still exercise, but definitely need to start eating healthy again.
Anyway, just wanted to thank you for helping me so much. The advice and tips that I have gotten from you and this board are amazing. I can't thank you all enough!
The best of luck in your trial. I hope it works out for you! And congratulations on the weight loss.
I also was a beanpole most of my life and also weighed 110 on my wedding day. Although not quite that thin after kids, I was a a comfortable weight. I have just gained 30 lbs in the last 2 years. Before that I had went down to 118...then we went on vacation and it was downhill from there. I think it is the age thing because I never used to gain weight no matter how much I ate. On the other hand, now that I have the facts, I'm sure that I have had sleep apnea even when I was thin. I had a snoring problem even at 118 lbs. Exercise helped to keep my energy up before CPAP and I still exercise, but definitely need to start eating healthy again.
Anyway, just wanted to thank you for helping me so much. The advice and tips that I have gotten from you and this board are amazing. I can't thank you all enough!
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Barb (Seattle)
- Posts: 663
- Joined: Wed Aug 03, 2005 6:41 pm
Sleepless on LI wrote:OTB
My problem, however, doesn't really seem to be the amount of episodes I have per night, but perhaps that I might still have an oxygen desaturation issue. [/url]
Lori, I'm so sorry that you're going through this...sure glad as heck you're not leaving!!! Have a question. If there are no apneas...or a small amount...what is causing the oxygen desaturation? That sure is a puzzle in my mind. I am glad you feel good today...was the end of the day different as well as far as energy?
Lori:
Was away from the board for awhile and didn't see this thread until now. Sorry you have been in distress lately, but from some of your past posts i kind off thought to myself "why does she have to be on cpap?" the only thing seemed to be the destats thing and that didn't seem way off track either. But i wasn't going to second guess your DR or your posts of how good you were feeling once the equipment issues were resolved for you! so you know i am a straight shooter and will give whatever help or advice i can however small my contribution. actually you have been given such great advice and support from all the rest of our cpaptalk family already there is not much for me to add, except to tell you we care and are always here for you! I was glad to read you had a good night w/o cpap and i hope those good nights continue for you! I also would utilize the pulse oximeter just to see where the oxigen levals are etc. You are doing all the right things: eating the right foods, lots of water, lost 20#-WOW it can only lead to good, good things for YOU! I know it was a hard call but you made it (that's my girl) and i hope things get better and better for you. Please keep us posted - YOU will win again!
My best to you always,
steve,
ufo13
Was away from the board for awhile and didn't see this thread until now. Sorry you have been in distress lately, but from some of your past posts i kind off thought to myself "why does she have to be on cpap?" the only thing seemed to be the destats thing and that didn't seem way off track either. But i wasn't going to second guess your DR or your posts of how good you were feeling once the equipment issues were resolved for you! so you know i am a straight shooter and will give whatever help or advice i can however small my contribution. actually you have been given such great advice and support from all the rest of our cpaptalk family already there is not much for me to add, except to tell you we care and are always here for you! I was glad to read you had a good night w/o cpap and i hope those good nights continue for you! I also would utilize the pulse oximeter just to see where the oxigen levals are etc. You are doing all the right things: eating the right foods, lots of water, lost 20#-WOW it can only lead to good, good things for YOU! I know it was a hard call but you made it (that's my girl) and i hope things get better and better for you. Please keep us posted - YOU will win again!
My best to you always,
steve,
ufo13
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Also use ResMed N30 and ResMed P30i |
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Snoozie,
I was going to say, maybe it's the OSA that causes us to gain weight. But being you say you think you had it at 118 lbs., that can't be the case because that is a beautiful weight to be. I wish you the best and thank you again for the lovely words you expressed in your post.
Barb,
Great friggin question! I don't know if the desats came from the fact that perhaps my episodes happened during REM, which is where the only desats I had below 90% occurred or if it had anything to do with my weight or what. But that is a great question, thank you. I am going to pull out the graphs from my sleep study and see if some miracle will occur and perhaps I can put the events to the sleep stage in which the occurred. If they did occur in REM, there we'll have it. Like I said, I am really nervous to hear what the oximeter is going to show me. If it shows me moderate or worse desats, that would mean I still have some problems that either need oxygen or CPAP. I don't know which. I also have to wait and see if my energy level falls back to "zombie" mode like it did prior to therapy if I stay off the machine. But I just don't get it.
Steve,
My biggest supporter on this site. You have never, ever, in all the time I've been posting here, given me so much as one negative word. Let me take it one step further. Your encouragement and even defense of my motives at times have always made me step back and say, "Whoa, who is this guy who is the sweetest thing next to processed sugar???" You will never know just what a doll I think you are. I hope you knew you could have offered your opinion to me all along without running any risk whatsoever as far as I'm concerned. I would have always welcomed anything you've had to say with open heart and mind. I know if it came from you, it could only be with the best intentions.
I have to say, since my only desats were during REM, and it was 48 mins. at the study, I don't know if that's a serious thing. If it was, I guess we could attribute that to my lack of energy and the headaches perhaps. I know it didn't do anything as far as my BP because that never came down on therapy and I needed finally to be put on a diuretic to bring it down. What does that mean in the grand scheme of things? Was it a problem that this was happening healthwise yet? I don't know that either.
In any event, thank you for always having my back. And since I don't plan on going anywhere regardless of my outcome, I will be speaking with you. Thanks for always being there for me with kinds words and encouragement. I remember from way back your words, "You will succeed." I will never forget you for that. It came at a time when that was what I really needed to hear and you've never let me down since.
I was going to say, maybe it's the OSA that causes us to gain weight. But being you say you think you had it at 118 lbs., that can't be the case because that is a beautiful weight to be. I wish you the best and thank you again for the lovely words you expressed in your post.
Barb,
Great friggin question! I don't know if the desats came from the fact that perhaps my episodes happened during REM, which is where the only desats I had below 90% occurred or if it had anything to do with my weight or what. But that is a great question, thank you. I am going to pull out the graphs from my sleep study and see if some miracle will occur and perhaps I can put the events to the sleep stage in which the occurred. If they did occur in REM, there we'll have it. Like I said, I am really nervous to hear what the oximeter is going to show me. If it shows me moderate or worse desats, that would mean I still have some problems that either need oxygen or CPAP. I don't know which. I also have to wait and see if my energy level falls back to "zombie" mode like it did prior to therapy if I stay off the machine. But I just don't get it.
Steve,
My biggest supporter on this site. You have never, ever, in all the time I've been posting here, given me so much as one negative word. Let me take it one step further. Your encouragement and even defense of my motives at times have always made me step back and say, "Whoa, who is this guy who is the sweetest thing next to processed sugar???" You will never know just what a doll I think you are. I hope you knew you could have offered your opinion to me all along without running any risk whatsoever as far as I'm concerned. I would have always welcomed anything you've had to say with open heart and mind. I know if it came from you, it could only be with the best intentions.
I have to say, since my only desats were during REM, and it was 48 mins. at the study, I don't know if that's a serious thing. If it was, I guess we could attribute that to my lack of energy and the headaches perhaps. I know it didn't do anything as far as my BP because that never came down on therapy and I needed finally to be put on a diuretic to bring it down. What does that mean in the grand scheme of things? Was it a problem that this was happening healthwise yet? I don't know that either.
In any event, thank you for always having my back. And since I don't plan on going anywhere regardless of my outcome, I will be speaking with you. Thanks for always being there for me with kinds words and encouragement. I remember from way back your words, "You will succeed." I will never forget you for that. It came at a time when that was what I really needed to hear and you've never let me down since.
L o R i
stick around
LoRi : You are my rock on this site! You can't go anywhere, because we know where you are, and we will all come to LI to haunt you!Congrats on the weight loss. Are we to watch for the future Mother and daughter models?! Since I started on this site I always look for your posts,and respect your input and suggestions, as I am sure others do. So keep your chin up, I will say a prayer for you on All Saints Day (tomorrow).Remember you are a member of our family here, and we need to help each other. take care Rod
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Rod,
I'm your rock!!! Holy cow, how nice. But I have to say, as far as knowledge goes, I am far from one of the most learned on this site. All I ever do is try to either impart my own experiences or opinions. If this helps, I am thrilled, honestly. It makes me very happy to know that I am really serving a purpose here. When I read posts from some of our members who write things that are so technical and intelligent sounding, I am in awe. I am not one of them. I guess I'm more of the cheerleader on the side type who can offer the encouragement, but doesn't know the regulations and the guidebook by heart.
Yes, we are all a family here. That's one of the things I absolutely love about this place. If you're not on here, you can't understand. My husband just doesn't get why I'm on this site all the time. Like I said, his new nickname for me is "CPAP." Every morning, he'll come upstairs while I'm answering my mail and reading the replies to the posts and say, "Good morning, CPAP." It's a little joke already. I have to remind him, my name is Lori???
And, NO to the mother/daughter modeling. I am an old woman. Not a chance, even if I lost 30 lbs. The face is not what it used to be, unfortunately. But thanks for the laugh.
By the way, send me your photo, please. Still looking forward to helping you get into the updated yearbook which I will be putting on the site in a couple of days.
Thanks, Rod, for your reply. You are very kind to say what you did.
I'm your rock!!! Holy cow, how nice. But I have to say, as far as knowledge goes, I am far from one of the most learned on this site. All I ever do is try to either impart my own experiences or opinions. If this helps, I am thrilled, honestly. It makes me very happy to know that I am really serving a purpose here. When I read posts from some of our members who write things that are so technical and intelligent sounding, I am in awe. I am not one of them. I guess I'm more of the cheerleader on the side type who can offer the encouragement, but doesn't know the regulations and the guidebook by heart.
Yes, we are all a family here. That's one of the things I absolutely love about this place. If you're not on here, you can't understand. My husband just doesn't get why I'm on this site all the time. Like I said, his new nickname for me is "CPAP." Every morning, he'll come upstairs while I'm answering my mail and reading the replies to the posts and say, "Good morning, CPAP." It's a little joke already. I have to remind him, my name is Lori???
And, NO to the mother/daughter modeling. I am an old woman. Not a chance, even if I lost 30 lbs. The face is not what it used to be, unfortunately. But thanks for the laugh.
By the way, send me your photo, please. Still looking forward to helping you get into the updated yearbook which I will be putting on the site in a couple of days.
Thanks, Rod, for your reply. You are very kind to say what you did.
L o R i
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Bill,WAFlowers wrote:And what am I? Chopped liver?Sleepless on LI wrote:Steve,
My biggest supporter on this site.
Nah, I'm the wiseguy who yanks your chain; who pulls your leg; and who always has your back -- with saber in one hand and a Gyrojet pistol in the other .
I knew I was digging a hole when I wrote that. You know I love you, too...I wouldn't change you and your chain-yanking fun for all the money in the world. Well, maybe all the money... And you do always have my back and everyone else's...no kidding around.
BTW, I actually love chopped liver. Yes, I'm strange...
L o R i
I am in the same boat as you are at this point. I am contemplating whether or not to call it quits. I have AHIs of 3 or less and have not felt any different since starting CPAP therapy 4 months ago.
I also had an oxygen reading during REM sleep dip quite a bit, but for only a 32 minute period.
Let me know how your next experiments goes. I have a visit to my ENT which after RF treatment to my turbinates might just help me say good bye to CPAP devices. I also have no anatomical reason for having Sleep Apnea according to my doctors with this one exception.
Good Luck.
I always like to look at it this way. It could always be worse. Right?
I also had an oxygen reading during REM sleep dip quite a bit, but for only a 32 minute period.
Let me know how your next experiments goes. I have a visit to my ENT which after RF treatment to my turbinates might just help me say good bye to CPAP devices. I also have no anatomical reason for having Sleep Apnea according to my doctors with this one exception.
Good Luck.
I always like to look at it this way. It could always be worse. Right?
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
SLEEPYHED,
Absolutely, it could always be worse than this. Good luck to you in getting off, but do what I'm doing and get the overnight pulse oximeter.
I posted ths under another thread, but wanted those following this one to have the info. So in case you feel you've read this before, you might have.
Well, I visited with my DME today to get my overnight pulse oximeter. Will be using it tonight. He did a baseline reading in which he read my level as 99%. But he said it can change when sleeping due to sleeping patterns, the fact that you're in the laying down position, and how the blood reacts. But he agreed that I probably shouldn't have been placed on CPAP to begin with and should probably have just been given oxygen because a 4 HI does not give need to be on CPAP therapy.
He asked if I had had any heart problems in the past, which I did ending in 2001 with the second of two cardiac ablations. I had supraventricular arrhythmia and tachycardia, which was cured. But he said that could be a sign that perhaps the heart is not pumping up to where it should be and that I need oxygenation at night.
So tonight will be the tell-it-all. If I desat, I need oxygen. But it seems that I probably don't need CPAP therapy and probably never did. I just find it odd that I felt so much more energetic when it wasn't necessary in the first place. But I'm not going to question it. Last night was night 2 of sleeping without the machine and I slept from 11:30 PM to 5:15 AM with no waking up. I can't tell you what two nights of this has done for my energy, not to mention my attitude about ever being able to sleep through the night again. I hope it continues to keep going longer and longer each night. Night 1, I slept for 5 hours. Last night was 5 3/4 hours. Maybe if I'm lucky, tonight will be 6...but with the pulse oximeter on my finger, it might make me subconsciouly wake up to make sure I'm not laying on it.
Will check in with you all in the morning. Thanks for your support.
Absolutely, it could always be worse than this. Good luck to you in getting off, but do what I'm doing and get the overnight pulse oximeter.
I posted ths under another thread, but wanted those following this one to have the info. So in case you feel you've read this before, you might have.
Well, I visited with my DME today to get my overnight pulse oximeter. Will be using it tonight. He did a baseline reading in which he read my level as 99%. But he said it can change when sleeping due to sleeping patterns, the fact that you're in the laying down position, and how the blood reacts. But he agreed that I probably shouldn't have been placed on CPAP to begin with and should probably have just been given oxygen because a 4 HI does not give need to be on CPAP therapy.
He asked if I had had any heart problems in the past, which I did ending in 2001 with the second of two cardiac ablations. I had supraventricular arrhythmia and tachycardia, which was cured. But he said that could be a sign that perhaps the heart is not pumping up to where it should be and that I need oxygenation at night.
So tonight will be the tell-it-all. If I desat, I need oxygen. But it seems that I probably don't need CPAP therapy and probably never did. I just find it odd that I felt so much more energetic when it wasn't necessary in the first place. But I'm not going to question it. Last night was night 2 of sleeping without the machine and I slept from 11:30 PM to 5:15 AM with no waking up. I can't tell you what two nights of this has done for my energy, not to mention my attitude about ever being able to sleep through the night again. I hope it continues to keep going longer and longer each night. Night 1, I slept for 5 hours. Last night was 5 3/4 hours. Maybe if I'm lucky, tonight will be 6...but with the pulse oximeter on my finger, it might make me subconsciouly wake up to make sure I'm not laying on it.
Will check in with you all in the morning. Thanks for your support.
L o R i
Now you have me really thinking. I too had an ablation due to supraventricular arrhythmia and tachycardia. This was 2.5 years back and I too was cured.
I slept with the oximeter prior to going on CPAP. Don't give it much thought for it did not bother me whatsoever whilst sleeping.
I will follow the diet and H2O advice since I need to drop about 15 lbs and RF procedure. I will ask again for an oximeter for an overnight study.
Thanks for your guts in starting this thread. Everyone is different, but you and I seem to have simular results to CPAP. I remember my sleep doc telling me that CPAP might not help somone like me and all this time I was thinking what did he mean by that. It now makes a little more since now that I have a confirmed deviated septum and clogged turbinates. I really never needed to go on CPAP in the first place.
My promise to all of you: if CPAP is no longer a viable therapy for me, I will donate all of the equiptment listed below to the less fortunate and, or charity.
7 Masks
16 ft of hose
aussie hose
Hose covers-2
Remstar Auto/Humidifier
Carrying case
USB card reader and software
S-8 with 8 hours on it
Carrying case
Cant give away my nosebreath maybe I could join a 40 and older Hockey league.
Good luck!!!!!
Slpyhed
Kirk
I slept with the oximeter prior to going on CPAP. Don't give it much thought for it did not bother me whatsoever whilst sleeping.
I will follow the diet and H2O advice since I need to drop about 15 lbs and RF procedure. I will ask again for an oximeter for an overnight study.
Thanks for your guts in starting this thread. Everyone is different, but you and I seem to have simular results to CPAP. I remember my sleep doc telling me that CPAP might not help somone like me and all this time I was thinking what did he mean by that. It now makes a little more since now that I have a confirmed deviated septum and clogged turbinates. I really never needed to go on CPAP in the first place.
My promise to all of you: if CPAP is no longer a viable therapy for me, I will donate all of the equiptment listed below to the less fortunate and, or charity.
7 Masks
16 ft of hose
aussie hose
Hose covers-2
Remstar Auto/Humidifier
Carrying case
USB card reader and software
S-8 with 8 hours on it
Carrying case
Cant give away my nosebreath maybe I could join a 40 and older Hockey league.
Good luck!!!!!
Slpyhed
Kirk
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
SLEEPYHED,
Sounds like someone really needs to hear my results. Isn't it strange that we both had ablations for the same condition and we both have low AHI's but desat? There has GOT to be a link between these two things.
I have to say, I am really worried...correction, apprehensive about tonight and finally hearing the results. But I truly think the ending is going to take me off CPAP since I've never gone over a 4, even when being diagnosed with OSA bu a 4 HI, and only once did I get a reading on 4 cms. the week I did my experiment of one night at a 4. But even that, for all intents and purposes, wouldn't have them placing you on therapy.
I am wondering if they had put me (and probably you) on oxygen therapy to begin with, if we would have had the same results You didn't feel improved from therapy, but I did. Strange if I didn't need it anyway. Maybe it was like George said, a placebo? Amazing what the mind can convince the body of.
In any event, will check back in on this thread when the results are in. I will have to wait until my doctor gets the results from my DME and lets me know they're in. The waiting is always the hardest part. Knowing is better since you can come to terms with whatever they tell you, some things better than others, of course.
Sounds like someone really needs to hear my results. Isn't it strange that we both had ablations for the same condition and we both have low AHI's but desat? There has GOT to be a link between these two things.
I have to say, I am really worried...correction, apprehensive about tonight and finally hearing the results. But I truly think the ending is going to take me off CPAP since I've never gone over a 4, even when being diagnosed with OSA bu a 4 HI, and only once did I get a reading on 4 cms. the week I did my experiment of one night at a 4. But even that, for all intents and purposes, wouldn't have them placing you on therapy.
I am wondering if they had put me (and probably you) on oxygen therapy to begin with, if we would have had the same results You didn't feel improved from therapy, but I did. Strange if I didn't need it anyway. Maybe it was like George said, a placebo? Amazing what the mind can convince the body of.
In any event, will check back in on this thread when the results are in. I will have to wait until my doctor gets the results from my DME and lets me know they're in. The waiting is always the hardest part. Knowing is better since you can come to terms with whatever they tell you, some things better than others, of course.
L o R i