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Re: Done. Finished. I GIVE UP!
Posted: Tue Apr 08, 2014 11:53 am
by jencat824
Don't know why, but my neuro (he is also my sleep dr) wants me to nap daily. Perhaps it is for other reasons (seizures, migraines, lymphoma, fibro, thyroid etc..), but I rarely have TIME for the nap anymore. I've been running of empty since Dec 16, when my life fell apart. The only 'sane' activity I have is reading & posting on this forum, in the hopes of helping someone.
I have been napping in chairs at the rehab, hospital & drs offices. If I nap without my CPAP it is worse than no nap. If I'm home & on my regular schedule, I usually take a nap from 5:30 to 6pm & it refreshes me. It was my understanding that the nap needs to be short in order to get the restorative benefit from it. A nap of say 4 hours interferes with good nighttime sleep cycles. I know I've read about Fortune 500 companies providing 'nap rooms' to boost productivity. I think its the duration of the nap that defines whether its helpful or not helpful.
Re: Done. Finished. I GIVE UP!
Posted: Tue Apr 08, 2014 12:53 pm
by SuddenlyWornOut45
If you dont have good offline equipment and DME support, getting onto CPAP can be damn well near impossible. I had good if not excellent real world, brick and mortar DME support when I started years ago and that was critical. If I had not had that support, I seriously doubt I'd be on CPAP now.
Online support is OK but it is not a replacement for offline, real world equipment support.
Ive never seen a sleep doc who would give me equipment specific support and recommend changes and this and that. A sleep doc who is in the office only once a week is ridiculous.
You may be better off "giving up" and trying alternative approaches that bypass CPAP and all the gear. Dramatic weight loss can help, bariatric surgery, eliminating all sedating medications and giving up booze. There are surgeries that are around, some work for some people, other people the surgeries are worthless. I had a big pressure reduction from a simple tonsillectomy a year ago. Pressures went from the 14s, 15s and even 16s to the high 10s and mid 11s after the tonsillectomy.
There is a jaw break procedure that has a good reputation, its the OSA surgery the U.S. military uses. Trachestomy is reserved for those with purely obstructive apnea and those with morbid obesity and severe OSA.
CPAP compliance is only around 50% and frankly, Im skeptical if its really that high. I dont blame you.
Eric
Re: Done. Finished. I GIVE UP!
Posted: Tue Apr 08, 2014 2:33 pm
by jencat824
SuddenlyWornOut45 wrote:If you dont have good offline equipment and DME support, getting onto CPAP can be damn well near impossible. I had good if not excellent real world, brick and mortar DME support when I started years ago and that was critical. If I had not had that support, I seriously doubt I'd be on CPAP now.
Online support is OK but it is not a replacement for offline, real world equipment support.
Ive never seen a sleep doc who would give me equipment specific support and recommend changes and this and that. A sleep doc who is in the office only once a week is ridiculous.
You may be better off "giving up" and trying alternative approaches that bypass CPAP and all the gear. Dramatic weight loss can help, bariatric surgery, eliminating all sedating medications and giving up booze. There are surgeries that are around, some work for some people, other people the surgeries are worthless. I had a big pressure reduction from a simple tonsillectomy a year ago. Pressures went from the 14s, 15s and even 16s to the high 10s and mid 11s after the tonsillectomy.
There is a jaw break procedure that has a good reputation, its the OSA surgery the U.S. military uses. Trachestomy is reserved for those with purely obstructive apnea and those with morbid obesity and severe OSA.
CPAP compliance is only around 50% and frankly, Im skeptical if its really that high. I dont blame you.
Eric
Sorry, but I have to disagree with this. I think online support today is as crucial as your offline support was when you started. I started CPAP 14 years ago & I had just about NO support, from the Dr at that time or from my DME. I just pestered the DME into letting me try a different mask until I found one I could use. Even at that, I suffered thru several corneal abrasions on both eyes and so many nose sores I have permanent scars to prove it. I stuck it out because I believed if I did it would get better - and it did.
Then 12 years into therapy I found this forum. At that point I was TRULY able to 'help myself' to fine tune my therapy to what I have today. I function better now than in the past, due to my therapy. If I had just depended on what the DME told me, I would have quit, but I guess I'm just not a quitter. I keep going no matter what, in life as in CPAP. Its just who I am.
I think the OP is like me, also not a quitter, but was just going over a rough patch that most of us experience early on in therapy. The online support IMHO is better than a brick & morter DME. This forum gives you many different opinions & perspectives when a DME usually just gives you one. If you have a good DME to work with, that obviously is a plus and any newbie is going to turn to them as well as this forum. I think this forum has taught me more about CPAP therapy than any DME or physician has so far. I know if I have a question or problem, I can post it and get replies from others who have had the same problem.
I would encourage anyone on CPAP to join this forum, I was giving someone in my Dr's office the other day the name of the forum for encouragement. I know CPAP can be challenging, but many people have done this regardless of support. I read somewhere that at least 50% of new CPAP users quit before the first year. That's sad, but this forum would probably have provided most of those people a better chance for success. I believe in this forum & the great folks here.
Re: Done. Finished. I GIVE UP!
Posted: Tue Apr 08, 2014 2:35 pm
by robysue
WindyCityEsq wrote:Where are you getting your info from, chunkyfrog? Everything I've ever read in scientific journals has hailed the nap for its restorative qualities, provided that you don't nap for too long. In fact, many progressive F5 companies permit daytime napping at 20-30 min intervals, and a few even provide napping quarters in their building precisely because it increases productivity.
Naps are a two-edged sword.
For people with NORMAL sleep patterns, a (short) nap can indeed be very restorative, lead to better productivity, and not interfere with night time sleep in any way.
But for people with insomnia or with delayed sleep phase problems, even a short daytime nap simply throws off your already not very good sleep patterns and makes them worse: You have to be
sleepy at bedtime in order to get to sleep, and for many people with insomnia and delayed sleep phase problems, the nap winds up making you NOT SLEEPY at bedtime. So you don't sleep or you don't sleep very well during the night, which then makes you tired the next day, and that feeds the need for yet another nap ... One of the first things you're told when you're fighting a serious insomnia monster is: No Napping During the Daytime.
For people with OSA, there's the added problem of napping without the PAP. If the nap is NOT at home or not in bed, then the PAP won't be used and a 20-30 minute PAPless nap is not going to be restorative because it's going to be an apnea-filled restless sleep.
Re: Done. Finished. I GIVE UP!
Posted: Tue Apr 08, 2014 4:43 pm
by WindyCityEsq
robysue wrote: ... But for people with insomnia or with delayed sleep phase problems, even a short daytime nap simply throws off your already not very good sleep patterns and makes them worse... If the nap is NOT at home or not in bed, then the PAP won't be used and a 20-30 minute PAPless nap is not going to be restorative because it's going to be an apnea-filled restless sleep.
Yes, that's right. Correct me if I'm wrong, but the original poster doesn't suffer from insomnia or delayed sleep problems, correct? And she definitely indicated that she was CPAPing during her nap. So I'm failing to see how a nap is wrong in her situation.
Re: Done. Finished. I GIVE UP!
Posted: Tue Apr 08, 2014 4:57 pm
by robysue
WindyCityEsq wrote:robysue wrote: ... But for people with insomnia or with delayed sleep phase problems, even a short daytime nap simply throws off your already not very good sleep patterns and makes them worse... If the nap is NOT at home or not in bed, then the PAP won't be used and a 20-30 minute PAPless nap is not going to be restorative because it's going to be an apnea-filled restless sleep.
Yes, that's right. Correct me if I'm wrong, but the original poster doesn't suffer from insomnia or delayed sleep problems, correct? And she definitely indicated that she was CPAPing during her nap. So I'm failing to see how a nap is wrong in her situation.
The OP says in her first post:
okcpa99 wrote:I have tried so many things.
-quattro air mask and hybrid mask
-lanolin on the nasal pillows to help them seal on the hybrid
-I changed my CPAP pressure to a APAP pressure (just went up from 11 to 12).
-I tried ambien and trazadone hoping I would sleep through the discomfort - but no...
(emphasis added)
You don't typically get a prescription for Ambien or Trazadone (to be used as a sleep aid) unless there's something wrong with the night time sleep.
My guess is that the discomfort of PAPing is leading to bedtime insomnia---the inability to fall asleep at an appropriate bedtime. And in that case, daytime napping may make the situation worse by making it less likely for the OP to feel genuienly
sleepy at his/her desired bedtime.
In practice someone caught between the rock of "cpap discomfort leads to bedtime insomnia" and the hard place of "I need a nap to get through the day" simply has to experiment: If a short CPAP nap helps, wonderful. But if putting on the CPAP for the nap prevents the person from sleeping, and they start taking CPAP-less naps because they can't get to sleep with the mask on, they'd be better off not napping.
Re: Done. Finished. I GIVE UP!
Posted: Fri Apr 18, 2014 8:01 pm
by dogmycopilot
I waited nearly a year to get a cpap. First month it seemed to help; I was happy with it. Maybe a placebo effect. Second month I developed difficulty breathing unless I loosened it enough so that it would leak just a little. Sleeping much too much -- sometimes 14 hours a day. Sleep doctor is inaccessible. Sleep center's promise to send someone to adjust pressure and take a blood oxygen reading did not materialize. Provider of equipment is inaccessible. Enough is enough! I feel much worse now than I ever did before, and I'm getting really depressed. I'm returning the cpap, even if I have to just leave it on the provider's door step and going it alone. Some things just don't work, especially when they're embedded in a dysfunctional social system of treatment.
Re: Done. Finished. I GIVE UP!
Posted: Fri Apr 18, 2014 8:35 pm
by Wulfman...
dogmycopilot wrote:I waited nearly a year to get a cpap. First month it seemed to help; I was happy with it. Maybe a placebo effect. Second month I developed difficulty breathing unless I loosened it enough so that it would leak just a little. Sleeping much too much -- sometimes 14 hours a day. Sleep doctor is inaccessible. Sleep center's promise to send someone to adjust pressure and take a blood oxygen reading did not materialize. Provider of equipment is inaccessible. Enough is enough! I feel much worse now than I ever did before, and I'm getting really depressed. I'm returning the cpap, even if I have to just leave it on the provider's door step and going it alone. Some things just don't work, especially when they're embedded in a dysfunctional social system of treatment.
This is why many/most of the people on the forums have learned to take charge of their own therapy. Nobody is going to care about it as much as YOU do. If you don't care, I don't care.
Just stay off the highways and out from behind the wheel of a vehicle. Stupid people kill too many innocent ones. And, if you're too pathetic to try to get help from this forum, then you deserve whatever you get. But, the people around you DON'T. Take some responsibility with your life and quit blaming others.
Den
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Re: Done. Finished. I GIVE UP!
Posted: Fri Apr 18, 2014 9:04 pm
by prion
Don't give up. it takes a while but the benefits are so valuable. I've been at this for a year and I'm 100% compliant now. I finally have it down and have done it for a long time. I finally found all the proper pillows ( a buckwheat ) is essential to me, the proper sleep positions. I'm entirely used to my mask now and have no leaks. I can go weeks at a time now under 1.0 AHI from a start of 48 AHI, I even get buckshot a few times a month. I'm totally self diagnosed and treated. I never have to sleep in the daytime ever now. I don't fall asleep at the wheel twice a month like I used to ( no kidding). In a year I've lost about 45lbs. I exercise daily with a 5 mile hike at 5 am.
My blood pressure is normal now with no meds I think it started out at 150/108 is now around 117/77. My resting heart rate was around 90, now it's about 42. I don't feel the need to eat carbs all the time, I greatly reduced my alcohol use. Yes it's been a hard road, but I'm so grateful I got it to work for me. I wouldn't even consider sleeping without my hose, ever. The more articles I read I find how very dangerous apnea is. I'm not a guy that can easily overcome discomfort. I'm a pretty whiny old baby, but I have this apnea thing nailed. Just keep going. There will be a point when it all falls into place. It's really important to keep going.
Re: Done. Finished. I GIVE UP!
Posted: Sat Apr 19, 2014 7:53 am
by 49er
dogmycopilot wrote:I waited nearly a year to get a cpap. First month it seemed to help; I was happy with it. Maybe a placebo effect. Second month I developed difficulty breathing unless I loosened it enough so that it would leak just a little. Sleeping much too much -- sometimes 14 hours a day. Sleep doctor is inaccessible. Sleep center's promise to send someone to adjust pressure and take a blood oxygen reading did not materialize. Provider of equipment is inaccessible. Enough is enough! I feel much worse now than I ever did before, and I'm getting really depressed. I'm returning the cpap, even if I have to just leave it on the provider's door step and going it alone. Some things just don't work, especially when they're embedded in a dysfunctional social system of treatment.
dogmycopilot,
I definitely understand your frustrations.
I would post all the issues you are having on this forum and let the experienced members help you as many of them know alot more than doctors do in my opinion. Start by using the link in my signature to register your equipment.
49er
PS - If you chose to follow my advice, please start your own thread. Thanks!
Re: Done. Finished. I GIVE UP!
Posted: Sat Apr 19, 2014 2:24 pm
by dogmycopilot
Den aka Wulfman: Tough talk! If we were standing face to face you'd change moderate your tone dramatically.
Re: Done. Finished. I GIVE UP!
Posted: Sat Apr 19, 2014 2:38 pm
by Goofproof
dogmycopilot wrote:Den aka Wulfman: Tough talk! If we were standing face to face you'd change moderate your tone dramatically.
Sleep Apnea and anger issue's, going to need a second doctor, and maybe a lawyer. Please don't drive in my area untreated either. Jim
Re: Done. Finished. I GIVE UP!
Posted: Sat Apr 19, 2014 3:07 pm
by Wulfman...
dogmycopilot wrote:Den aka Wulfman: Tough talk! If we were standing face to face you'd change moderate your tone dramatically.
Not a chance! I was actually being "nice". People who give up are the real "losers" in my book. There have been far too many vehicle accidents attributed to people with untreated sleep apnea.
This is so easy, a caveman could do it.
Wus!
Den
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Re: Done. Finished. I GIVE UP!
Posted: Sat Apr 19, 2014 3:51 pm
by dogmycopilot
Wulfman... wrote:dogmycopilot wrote:Den aka Wulfman: Tough talk! If we were standing face to face you'd change moderate your tone dramatically.
Not a chance! I was actually being "nice". People who give up are the real "losers" in my book. There have been far too many vehicle accidents attributed to people with untreated sleep apnea.
This is so easy, a caveman could do it.
Wus!
Den
An angry respondent is preferable to a gratuitously acerbic, self-satisfied one, especially on a forum such as this. That said, you and Jim can both show up, but be sure to get a good night's sleep. And by all means, keep working on your maturity level. Who knows? You may learn to be less dismissive and pointlessly obnoxious.
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Re: Done. Finished. I GIVE UP!
Posted: Sat Apr 19, 2014 4:08 pm
by Wulfman...
dogmycopilot wrote:I waited nearly a year to get a cpap. First month it seemed to help; I was happy with it. Maybe a placebo effect. Second month I developed difficulty breathing unless I loosened it enough so that it would leak just a little. Sleeping much too much -- sometimes 14 hours a day. Sleep doctor is inaccessible. Sleep center's promise to send someone to adjust pressure and take a blood oxygen reading did not materialize. Provider of equipment is inaccessible. Enough is enough! I feel much worse now than I ever did before, and I'm getting really depressed. I'm returning the cpap, even if I have to just leave it on the provider's door step and going it alone. Some things just don't work, especially when they're embedded in a dysfunctional social system of treatment.
EVERYTHING in your post is your way of trying to blame everyone else. "Oh, woe is me! I'm a victim."
So, now that you've found a forum that would be willing to actually HELP you, are you going to take advantage of it and keep trying?
Talk is cheap. If you're so "tough", maybe you could be tougher than that machine and mask.
Or, are you "chicken", McFly?
Den
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