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Can't take it anymore. Cpap has not helped at all !
I have not posted in here for over year. I've been so disillusioned with cpap. I owned my cpap for about 18 months. After numerous adjustments, breathers, which nothing has ever helped. I decided to lose weight starting this past January. Ok. I'm down to 200 pounds from 254. This did not help. I gave up on the cpap machine because that did not help after fighting with it for a year. My sleep Doctor would give me something to get me to sleep( which did not work) and I still felt bad after I was up for 4 or 5 hours. Then my sleep Doctor gave me some provigil to take in the afternoon, but this just made me feel not good at all. Well, I just started on the cpap machine again and of course it's not doing a thing..
My family Doctor put me on Ambien which does help me get to sleep, but I still feel very very tired at around noon every day.
So now, I'm just on the Ambien but this is having side affects. Trying to wean my self off of it.
My question here is, can one get permanent disability from having sleep apnea? I just don't know what else to do. I get off of work at 3:30 pm and hope I can drive home ok. I have to schedule anything I do around the house before 1pm or I'm just to exhausted to do any thing.
Like I say, I'm trying the cpap machine again but one of the main problems is, I wake up from breathing out of my mouth from the noise. I have the nasal pillows. I was going to put duck tape over my mouth but my wife started to yell at me.
Another thing that bothers me is I'll find different articles on line about cpap machine being a buch of crock. It has not helped me even though I would get 5 to 6 hours of sleep a night with it before. Now I'm trying to get use to it all over again.
I guess I've said enough and you all get the point. I just don't want to live like this.
Mitch
Views: 10403
Replies to This Discussion
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Permalink Reply by betty m on
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Mitch, believe me I know where you're coming from! I to feel like I have failed with c-pap! i first started using ti in 2006 and after 15 months of trying everything I was told by my dr. that I was not a candidate for c-pap and he recommended surgery.
I had the surgery [UPPP ] and after all that ai found out last december that my sleep apnea was back! I have been trying everything on the market to use the machine again. I am having a lot of trials and sometimes it's really hard but I WANT TO
LIVE SO I KEEP TRYING!!!!!!!! Please know that there is someone out there who is suffering just like you and PLEASE KEEP TRYING. There are so many people here on this forum who CAN AND WILL HELP US!!!!!!!!!!
GOD BLESS YOU!
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Permalink Reply by sleepycarol on
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It takes some of us a long time to adjust, and almost everyone has a learning curve when starting out.
First suggestion I would make is ditch the nasal mask. If you are mouth leaking you are not getting much benefit from using your machine. Check with your insurance as you are probably due for a new mask, check prices online and see which is more cost effective. Try a full -face mask. That should help with the mouth breathing.
Next I would suggest sit and watch tv or read a book during the day or evening prior to going to bed. Try to get where you are more relaxed in using the machine. If you are having negative thoughts try to block them out and try some positive thinking -- example -- this is helping me breathe so I can live longer. Imagine you are in your favorite vacation spot, anything to get your mind off from the negativity you are having.
Do you have any of the "creature comforts"? Try some aromatherapy (put on a small pad and place near the intake NEVER put anything in the humidifier. Cover your hose, etc.
What is your pressure and what machine do you have?
Whatever you do -- don't give up. It WILL get better.
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Thank you both for the reply's, it's appreciated. Well, I did not know they had a full face mask ( covers nose and mouth?).
I did sleep all night last night with my nasal pillow type mask. You see, I can sleep with it, it just does not make a difference if I do or I don't. I always feel fine in the morning. I start to get real tired every day at around 12pm or 1pm.. By the time I get home which is 4pm, I have to sit down on the couch and I just usually crash for like 5 to 20 minutes with out fail.
I'll see since I was able use the mask last night, if I feel any better this afternoon.
As far as settings on the cpap..I pay no attention to that and let the Dr or the cpap people do all that.
I did have to take 1 ambien to get to sleep last night...
I'll let all know how I feel this evening.
Thanks.
Mitch
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Many times the pressure settings aren't correct, even if you are having the doctor take care of it. It is in YOUR best interest to learn as much as you can about your machine and settings. Many things impact sleep apnea, sleeping position is a prime example. Many find that if they sleep on their side or tummy they do better.
IF you are leaking out your mouth you feel minimal effects of using the cpap. If the air is coming out your mouth, it isn't keeping your airway open, thus you are still having apneas.
A full face mask covers the mouth and nose and allows those that mouth to still get the therapy they need. Check those out.
Many find that taking Provigil or other similar drug helps them function. You maybe one of those that need that extra boost.
You do realize of the negative health issues you may encounter if you do not get your apnea under control. Such things as heart disease, impaired mental state, diabetes, etc. have been linked to sleep apnea. Not to mention the fact that will in a state of extreme fatigue you should not drive a car or operate dangerous equipment.
Decide that you can do this, you will take charge of your therapy, and you can feel better.
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Thanks for the reply sleepycarol.
Here is an update on how my day went after being able to sleep last night with the cpap.. At work I was pretty good. On the way home from work I got tired but I only live 14 miles. Got real tired when I came into my house. I had to take the usual 5 to 20 minute cat nap on the sofa but felt better then usual afterwards.
It does appear that I'm losing some of the effectiveness of the cpap because I open my mouth during sleep so maybe this is my main problem.
I will look into the full face mask and let all know how I make out with it. With any luck, maybe the full face mask will be the key.
Mitch
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Ask your DME about their mask exchange policy. The manufacturers allow the dme's to send back masks that don't work for you for credit. But many DME's don't allow exchanges -- so ask before hand. If they have a liberal exchange policy this will allow you to "try" a mask before settling on one specific. Yes, they will charge you when you get it, but the exchange will allow you to get credit for it if it doesn't work out.
Many of us have a huge sleep debt to pay off as well. It took me over a year to feel rested. I was very faithful in using my machine, but don't know when I had slept well prior to starting cpap. It was a gradual process for me.
Have you tried a chin strap? Many times they are ineffective, but until you get a new mask that might be an option.
Good luck and keep trying. If you have other issues please post and we will try to help you.
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Permalink Reply by SleepMBA on
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Mitch,
I truly believe CPAP can work for you. Keep asking questions and telling others your problems. Even though a mouth leak may seem like a little problem, it can nullify your therapy. So, it is like not wearing CPAP at all when certain problems arise, like mouth leaks. You actually had a good idea with the tape. I haven't done it myself, but I've read about others doing it with success. In my experience as a sleep tech, people will breathe out of their mouths when they are not getting enough air through their nose. You may need an adjustment on your machine. There is also a chance that you are a true mouth breather. In that case a full face mask would work well (which was already discussed here). Another way to keep your mouth closed is a chin strap.
Someone suggested to educate yourself as much as possible about your condition. Here are my suggestions:
www.sleepandcpap.blogspot.com
www.cpaptalk.com
With a little determination and some internet time, you will be cooking with gas in no time.
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Permalink Reply by RockRpsgt on
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It is perfectly normal to be tired between noon and 3pm. It is a natural down time for our bodies. The opposite happens at night where we will have a natural upswing in our energy level. if your up anyway.
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Permalink Reply by Tim on
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If you sleep with your mouth open with a nasal mask or nasal pillows, you may as well not be using CPAP. A full face mask will allow you to sleep with your mouth open while on CPAP; one downside is that full face masks are more prone to leaks and are more difficult to fit. Some people tie a nylon stocking or panty hose as a strap to hold their mouth closed, some use tape, and some use Polygrip to glue their lips closed.
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Mitch- you have to use a chinstrap with the nasal pillows. I've used the Mirage I Swift since 2004, and tried 5 chinstraps, without it, my mouth would certainly open, and it's not a sealed system then, the CPAP does no good.
I'm using the old "ruby red" neopreen one now, that my wife took several tucks in and stitched.
Unfortunately, many chinstraps don't fit or work, and I've researched every one. Resmed black premium is ok, but bulky at the top. The "Ruby red" is made by a company owned by Cardinel Health now, it's much thicker (1/8 in) stretchy fabric now, and gets hotter than heck, plus their sizes are too small, cpapplus isn't even going to carry it anymore, but I like the slip-on feature and open for the ears is a MUST, many chinstraps wrap down over the ears.
Let us know how you are doing.
Google "chinstraps" --even Amazon carries them, as many are trying to resolve snoring by just using a chinstrap!
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Permalink Reply by Mark Douglas on
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Mitch
I admire your apparent honesty. If you have lost 54lbs -- you had to have some good energy and smarts to be able to do it .
I didnt think my CPAP worked at all -- and quite using it. A year and a half later, I needed 5xpass. I got a different CPAP machine and this one helps.
Believe me pal, the least of your worries is disability from work. If your sleep is not "restorative" -- if you are gettting bad oxyen levels overnight , you are going to have heart disease -- and probably ten other things even worse. Im not saying you MIGHT get those things -- you WILL get those things. And you will wish you could go back to now and avoid them.
My CPAP machine did not work -- it was defective. And I had no clue.
I did not find that out till after my bypass. Its just possible yours was not functioning well. At least its worth checking -- take it in. I had to take mine in twice before they actually checked it, and they were stunned it was defective.
My new one works and I have lots more energy. (but Im doing other things too) I don't need the 3 naps a day I took -- which didnt help anyway.
I quit Provigil, I quit ambien, I use the CPAP religiously, and I make sure it works.
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Thank you all for the reply's It's so appreciated. The machine is working properly. It has one of the cards in it that can be read. The one time I had it read after being on the cpap for like I guess 6 months, my not berating episodes were only like two or 3 as opposed to 100 and some. Of course I still felt tired all the time. I'm due to see my sleep Doctor next month. I'll mention the full face mask to him..( I wonder why he did not mention this to me?) Funny thing, the last time I saw him, which was in January, after nothing was working, he told me to see a Psychologists, which I did not. Don't know if I need to find another sleep Doctor or not, but I did not like that fact he told me to see a Psychologists. I'm not one of these people that had a bad child hood and hated my parents.
Oh, I did try the duck tape last night and I could not sleep at all. I pretty sure I'm addicted to my ambien and don't take it on the weekends. I think that was more my problem then the duck tape ( I know, I should not be using the duck tape).
Thanks to all and I'll keep in touch..
Mitch
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