Replies to This Discussion

Permalink Reply by amott1973 on October 12, 2009 at 8:38pm

Hi Glenda. Welcome! I'm not sure what "hell in a chaff bag" feels like, but you should be feeling better than before I would think. I was one of the lucky ones that felt better almost immediately, although I know not everyone feels that way. When you wake up at night is it from not breathing or the mask leaking? or something unrelated?

If you are having some particular problems adjusting to the cpap I'm sure folks here can give some suggestions to try!

Good luck!

• ▶ Reply

Permalink Reply by sleepycarol on October 12, 2009 at 8:40pm

Hang in there!!

It is a long climb for many of us, but the climb is well worth the effort and time spent getting quality sleep.

Before being diagnosed I was getting a quantity of sleep as I could sleep 12 hours a night and yet was still exhausted. Now after 2 years of being on my machine I wouldn't go back to sleeping without it.

The hardest part is getting a mask that fits your facial features, low leakage, and comfortable. If the first mask proves to be "not right", squawk until the DME lets you try another. Most DME's (durable medical equipment places that provide you with the equipment) have a lenient policy and will give you up to 30 days to find a mask that you like that works for you.

If you have a humidifier, adjust it until the humidity level is comfortable to you. For some, they need it on a high setting, then others -like myself- need very little humidity. If you get water in your hose or mask, cover your hose with a fleece cover. You can make them yourself for little cost or purchase one from a DME or online. Our sister site has them for sale at www.apnealife.com.

You will probably have an adjustment period. That is normal. Try to wear the mask as long as you can tolerate it every night until you are sleeping the entire night with it on. Ask your partner if they would like to wake up and find you non-responsive next to them? Would they like to wake up to find you dead next to them? If they truly can not accept you with your mask, I would question their love for you.

If you have problems, post them and we will try to help you through them.

If you feel like ranting we will listen. If you feel like celebrating after a peaceful night, we are here for that as well.

Good luck.

• ▶ Reply

Permalink Reply by glenda brown on October 12, 2009 at 9:09pm

Thank you so much! Suddenly im not alone! I think I wake up because of habit,perhaps. I always see 11-something and 3-something, and have for years. I normally do a toilet stop, a quick drink and back to bed.
Perhaps I am just expecting too much too soon? I realise rome wasnt built in a day but being the ambitious impatient creature I am..
Leaking? no one told me about leaking! my mask is actually quite comfotable, I hear no leaks except when I pull the blankets up and the connection thingy hisses against it.I thought it was raining out! Seems I have a whole new science degree to earn here, ( blushing with naivety) And a list of questions for the doc, which isnt for another 4 weeks.
As for my partner.. If we are allowed a little humor on here I could go on for days, no weeks with the hubby degredation jokes. But the kids love him and he pays the bills.. I have horses so they are a plenty.

Im soo happy I have found you all. This is better than spending the morning in tears again!
I hope you dont get 'tired' of me too quickly,
Thanks again.

• ▶ Reply

Permalink Reply by susan mccord on October 12, 2009 at 11:39pm

Hi again, Glenda!!! First let me reassure you that NO ONE on here will ever "get tired" of you. If they were gonna get tired of anybody, it would have been me!! I was high maintenance for awhile.

I was diagnosed with sleep apnea late June 2009. Came to SleepGuide (thank God!) not long after that. People on here have helped me immensely---I don't think I'd have stayed in treatment without them. I had a hard time in the beginning too.

Okay, here are MY words of wisdom! There is a HUGE difference in the way people adjust to CPAP, and a wide range of reactions to that adjustment period, however long it may turn out to be. Mine took a good two months, maybe longer. I'm very comfortable with my CPAP now. Not long ago I felt like you do now--that I'd NEVER get adjusted, much less improve. I'd felt like total crap for so long that I couldn't remember how it felt to feel good.

The good news is I DID adjust. And I HAVE improved. Markedly. But it took awhile and Sleepy Carol's right--she told me the very same thing as did many others on SG. It takes patience and commitment. You WILL feel better, in your body's own time. I can promise you that, if you stick with CPAP every night. It works!!!

You'll hear people on here talk about "sleep deficit" or "sleep debt"--that refers to the length of time it takes each of our bodies to repair/heal itself. For some people it takes a long time. I'm falling into that category and I've learned, now that I understand the symptoms, that I was having apnea symptoms clear back in the early 70's. No one ever diagnosed apnea despite years of my going back to my MD many, many times, with c/o being too tired.

I was diagnosed with heart disease 4 years ago--I now know that there's a relationship between heart disease and apnea. My cardiologist was the person who finally referred me for a neuro workup which resulted in a sleep study which = diagnosed after all these years.

I have a huge sleep debt to pay back, as do some others. There's no way to predict how long it will take. I've had a GREAT deal of difficulty in the past, probably year, with memory loss, word retrieval, concentration, driving, on and on. When it finally caught up with me in the spring, it just knocked me on my ass. I was a serious mess from sleep deprivation. I'm 67 and my family thought I was sliding into dementia! I wasn't. I was critically sleep-deprived. So are you and, perhaps, with some complication with narcolepsy.

So it's important that you work hard at being patient with yourself during this process. If you're already able to say you feel somewhat comfortable with your mask, etc., you're doing very well!!! It took me a lot longer to get to that point, so there 'ya go......you're definitely not alone, truly not alone, especially on SleepGuide.

People on here get it, and know what you're going through. Even people who have adjusted more easily will be kind and very supportive to you, and provide you with answers to a gazillion questions you're probably gonna have as you go along.

I'm really glad you jumped right into the Forum here. You'll find a lot of cyber friends on SG. They'll lift you up when you can't move, and they'll celebrate with you every time things go a little better.

BTW, SleepGuide has a # of groups you can join if you like. (On your page, just click "Groups" to see what's available). You may benefit from the new members group ("newbies"). You also may want to check out our new Book Club. There are several good books on there, written by both patients and professionals on SG. If you have questions about any of them, you can contact the author right here on SleepGuide 'cause they're members too.

Just poke around and explore the site. You'll be surprised to see how much is on here!

Mike's gonna kick me off this discussion if I don't wrap it up (no, he won't really!), but it's gotten pretty long. So stay tuned. Bring your questions and concerns, and feel free to enter any discussion that's of interest to you. Again, welcome!!!!!!!

Susan McCord :-)s

• ▶ Reply

Permalink Reply by sleepycarol on October 13, 2009 at 8:20am

If you have questions concerning your treatment, ask them if you want. We have many very knowledgeable posters that will be glad to help. We can not dispense medical advice, nor can we treat you over the internet. But many times our questions are general in nature.

In the groups area we have many of the common questions answered. There is a section on hints that maybe beneficial to you as well.

I hope that you post as frequently as you feel the need.

• ▶ Reply

Permalink Reply by gordon on October 13, 2009 at 2:41pm

No offense, but since you mentioned it, your partner should be happy you will live longer, get healthier with energy, and more importantly, be there for your kids. I'm living longer to take care of my wife who is recovering from stage 2B breast cancer. Hope this improves day by day and you post often.

sleepycarol said:

If you have questions concerning your treatment, ask them if you want. We have many very knowledgeable posters that will be glad to help. We can not dispense medical advice, nor can we treat you over the internet. But many times our questions are general in nature.

In the groups area we have many of the common questions answered. There is a section on hints that maybe beneficial to you as well.

I hope that you post as frequently as you feel the need.

• ▶ Reply

Permalink Reply by 99 on October 13, 2009 at 3:08pm

i have a sleep deficit of some thirty or more years and i only received my CPAP earliern this year 2009 and am still tired, for six weeks i had a mental block and could not wear my CPAP from around august to the begining of october but now i take to it like a duck to water, it is very important but you have to convince yourself that is very important, there is excellent information here and top resurch to which you are haveing first hand informantion almost immediatly it becomes available, yes i am still in a mess but with love and tender treatment i will get out of this hole and steadily improve, listen to the words of wisdom and if it is for you fine ortherwise decide your own preferences for your own benefit to suit your circumstanses

• ▶ Reply

Permalink Reply by glenda brown on October 13, 2009 at 6:17pm

Thanks! Oh thanks thanks thanks. I was surprised to pop back here thismorning to find even more encouragement. I spent yesterday in and out of tears, that is so not me. I like to think im made of boot leather. Im even starting to think about the peace in death.. scaring myself silly here.
At 2am I threw my mask into the darkness and finally fell asleep. Thismorning I pulled myself together and went over the manuals and cleaned it all up ready for the nap that i'll be needing in a few hours.
My emotions are out of controll- could this be my numbed up old brain starting to come back to life?
Thanks again for your support, im so grateful there is people out there to talk to (complain at) that know.
I'll go and try and find my way around this god sent site now :)

• ▶ Reply

Permalink Reply by gordon on October 13, 2009 at 6:47pm

GLENDA- It's OK to abandon the mask and go to sleep, sleeping without the mask is better than not sleeping at all! This isn't Boot Camp! You'll have good days and bad ones, the comfort thing takes AT LEAST 30 days, with the proper equipment, and help here you can figure it out. Lay off it for a few days and sleep, whatever, this isn't for everyone, but if you need it then we're here to help, and you body will react weird to even a good solid 6 hrs of sleep, if you have had episodes/apnea for a long time, like I told Susan, I had weird dreams for over a month. Let us know what you need.

glenda brown said:

Thanks! Oh thanks thanks thanks. I was surprised to pop back here thismorning to find even more encouragement. I spent yesterday in and out of tears, that is so not me. I like to think im made of boot leather. Im even starting to think about the peace in death.. scaring myself silly here.
At 2am I threw my mask into the darkness and finally fell asleep. Thismorning I pulled myself together and went over the manuals and cleaned it all up ready for the nap that i'll be needing in a few hours.
My emotions are out of controll- could this be my numbed up old brain starting to come back to life?
Thanks again for your support, im so grateful there is people out there to talk to (complain at) that know.
I'll go and try and find my way around this god sent site now :)

• ▶ Reply

Permalink Reply by gordon on October 13, 2009 at 7:13pm

Hi Glenda- I went and read your original post to see where ur coming from, You said you were waking up choking, that's a classic symptom, to me, we have sleep apnea, I woke myself up, snorting, all the time. That's the tongue collapsing, relaxing and blocking the airway, especially sleeping on our backs, we hope to help you get the right mask, and it's better to sleep in your own room, I sent you an email on that, because your trying to get the right comfort setup, and spread out and such... I hope you can maybe get some insurance or make sure they let you switch masks trials, and give you the followup treatment you deserve.

gordon nelson said:

GLENDA- It's OK to abandon the mask and go to sleep, sleeping without the mask is better than not sleeping at all! This isn't Boot Camp! You'll have good days and bad ones, the comfort thing takes AT LEAST 30 days, with the proper equipment, and help here you can figure it out. Lay off it for a few days and sleep, whatever, this isn't for everyone, but if you need it then we're here to help, and you body will react weird to even a good solid 6 hrs of sleep, if you have had episodes/apnea for a long time, like I told Susan, I had weird dreams for over a month. Let us know what you need.

glenda brown said:

Thanks! Oh thanks thanks thanks. I was surprised to pop back here thismorning to find even more encouragement. I spent yesterday in and out of tears, that is so not me. I like to think im made of boot leather. Im even starting to think about the peace in death.. scaring myself silly here.
At 2am I threw my mask into the darkness and finally fell asleep. Thismorning I pulled myself together and went over the manuals and cleaned it all up ready for the nap that i'll be needing in a few hours.
My emotions are out of controll- could this be my numbed up old brain starting to come back to life?
Thanks again for your support, im so grateful there is people out there to talk to (complain at) that know.
I'll go and try and find my way around this god sent site now :)

• ▶ Reply

Permalink Reply by Jerri Lynn on October 13, 2009 at 8:35pm

I'm having a self-pity party right now and trying not to cry......I just got my CPAP this afternoon......I keep trying to convince myself how lucky and fortunate I am but all I really want to do is cry.......I'm trying to focus on the positive. Thanks to you on here I knew what type of machine to insist on and I got exactly what I want......partially due to my doctors who insisted on a monthly report of my apneas, snoring, hours of use, etc., etc. As happy as I am about my machine, I feel miserable! I'm not a nervous person but I sure feel so now......I'm not a self-pity person but I sure feel so now......I'm not a negative person, but I sure feel so now......I'm not a complainer, but I sure am one now......I don't normally lack confidence but I sure do now.
I think I'll just go hide now!
Please don't beat me up too bad.......sometimes you guys get pretty rough with people. I know in my heart how fortunate I am but at this instant I just don't feel that way.
Nite!

• ▶ Reply

Permalink Reply by susan mccord on October 13, 2009 at 9:51pm

Jerri--I left you a private email on your page. Sorry for the delay in picking up the message you left me. I'm GLAD you brought your fears and concerns into the Forum in the meantime.

NO ONE is going to beat you up about this. Getting equipment for the first time is daunting for nearly everyone. You're gonna have questions. You'll have answers and support from SleepGuide.

I wish I'd had the courage to tell MY story of how this process went for me. I didn't. I was afraid of the same thing. That people would judge me, or think I was crazy for being so upset.

I know now they wouldn't have. So GOOD for you, that you've put your trust, not just in me, but in this entire community of travelers who are on the same journey as you--a journey toward staying alive and as healthy as possible. They won't let you down. And neither will I.

I'm thinking about you, Jerri, and sending you energy. I have some to share now!, because of my CPAP. Take good care of you, and let us know how you're doing.

Respect and hugs, Susan McCord :-)

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page