Hello all. I was diagnosed w/severe sleep apnea in the end of November. I was excited to finally find out what is wrong w/me. For about 1.5 years I have been extreamly tired. I sleep all the time and not matter how much I sleep, I'm still tired. Anyways I just got my cpap machine 3 days ago. I HATE IT!!!!!!! I have to say I have gotten way less sleep since I've had it. I know it has not been that long, but I don't know how I will ever get used to it. I have the nasal one w/the nasal pillows. I feel like I can not breathe with it on. I feel like I am not getting enough air. The first night, I fell asleep for 2 hrs. then could not fall back to sleep. I finally took the mask off at 4am, I could not take it anymore. The second night I could not fall asleep until 2am. I woke back up at 3am. Again took it off at 4am. Last night I would fall asleep and wake up like every 1/2 hour. I took it off at 3am. Does anyone have any expieriences to share w/me. Will I get used to it. When will I be able to sleep w/it on all night? I dread going to bed now. Any advice or comment would be greatly appreciated. Thank you.
Wow, you sound just like me. I know I need to use it but I just cannot sleep with it on. I've tried the full face mask, the nasal mask, and the nasal pillows and can't tolerate any of them. I feel just like you do, that I can't get a good breath while wearing it. I've told my doctor I think the pressure is too high so she's sending me to a puliminologist to see if he will order it to be turned down. She also gave me an order for a heater for it, which I haven't gotten yet. I get so aggrevated at it, and just like you, I had to take it off to sleep. But the sleep I get isn't restorative. They told me mine was severe too. One doctor tried to scare me into using it by telling me that I would end up having a heart attack or stroke if I didn't but I still couldn't. I have tried, honestly I have. So please, if you find a way to start wearing yours please post and let me know because I really would like to be able to use mine. I've heard it would make me feel so much more rested. I hope to be able to wear it eventually, maybe with the heater and if the pulminologist will order the pressure reduced some. Best of luck to you with yours. Maybe we'll eventually be able to tolerate it.
I'm suppose to use a cpap as well, but I just couldn't get use to it so I don't use it anymore. For some reason I wake up every 4 hours and with the cpap it just made it worse. My brother has it as well, I think we got from my dad. I saw this procedure called the Pillar Procedure on the news and told my brother about it. He called his insurance company and they said they would cover it if his doctor recomends it. From what I read it's to stop snoring, but It has done very well with people with sleep apnea. I'll keep you posted.
If that's what I'm thinking of the ENT I saw told me it wasn't for people with severe sleep apnea, just mild. What I'm thinking of is these little bendable things that are inserted into the roof of your mouth. Is that what you are referring to?
I sure do empathize with you CPAP sufferers. I have been using mine
for three weeks and am still fighting it. I could not stand the nasal
pillows as I always felt I was smothering so I use a nasal mask at a
minimum pressure. I am lucky that all I need is a minimum of 7mm
and my machine is designed to compensate for the exhalation and
lowers the pressure to half as I exhale. My worst problem now is that
to prevent air escape the mask must be fairly tight and it causes me
pain in the flesh below my nose so I can only use it for 5 hours and
then must remove it. But it does prevent my afternoon hypersomnia
so I know it helps me. It's a quandary as to which is the lesser of
two evils, mask pain or non-CPAP misery. Wonder if anyone ever really
gets comfortable with it???
I thought it was just me! Thank goodness... I am supposed to have been wearing a cpap for several years now, and even though I have already had a heart attack, and 4 strokes, I never could sleep with the thing on my face. I too, have tried every differant mask, headstrap, etc...
I have changed my life in every other way, my diet, my medications, my lifestyle, but this cpap thing is one I can't conquer.
Not using CPAP is the worst of the evils...I have my own very frustrating problems and was raised from 8 to 16 with a full face mask because I open my mouth at night and it negates the effectiveness of cpap.
I used to use moleskin cut up into bands for the bridge of my nose.
Good luck to both of us...
Last edited by moderator2; 01-15-2009 at 01:09 PM.
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Azman, I have the same open mouth problem but I was provided an
elastic stretch band that goes over my head and under my chin that
prevents my mouth opening....another nuisance but it does manage to
prevent me opening my mouth as I sleep. Have you tried this device??
To CPAP or not to CPAP is still the unanswered question in my philosophy.
I'm learning that a lot of careful experimentation can fine tune the damn
thing to barely bearable.
Yes, I tried the chin strap when I was using the nasal mask and nasal pillows, but even with the strap I can open my lips enough to allow air out...I've always been a 'mouth breather'. The full face mask is extemely difficult for me, I'vev had it for 2 weeks and still have trouble getting and staying asleep. If I can fall asleep while the machine is going through its' 20 minute ramp up to full pressure(16), then I will stay asleep for 1-2 hours, but always wake up with this incredible amount of wind and pressure forcing it's way out of any available orifice or around the silicone seal. It's a laser like focused burst of air that leaks out and blows into your eye, and I'll try to move the mask to adjust it so it doesn't leak, but it seems like its' just way tooo much air to stay inside the mask.
Woe is me!(only half joking). My sleep study a month ago showd that I needed to be at 16 just to keep my throat open, and even when they had me at that pressure, i barely get into stage 3 or 4 seelp, so my physical and mental symptoms may never be alleviated even if I get accostomed to the machine at that level.
I'n not over weight, I don't take any drugs that should affect my ability to enter deep sleep stages, I'm what the Sleep Doc calls a ' skinny apniac', my jaw is small and narrow and my throat is not very deep. There is no surgery or device other than CPAP for my condition, which began about 3 years ago. Sonetime in the last 2 years since my initial sleep study and titration study, my pressure needed to be raised from 8 to 16, so even though I got accustomed to the cpap at 8 and was sleeping with it, it was doing nothing to stop my 400+ apneas per night, and I might was well not been wearing it. Basically, even if I get used to the CPAP at 16, I may still not get enough restorative sleep, I got 3% during my study, the acceptable range is 20%. So I may be doomed to high blood pressure, heart attack, stroke, and continued dimished mental capacity and energy levels.
All my hormone levels are low, I asked the Doc if Hormone replacement might aid my recovery and increase my deep sleep stage sleep...After consulting with the Sleep Doc, he came back and said that noth9ng other than CPAP will help me get better. I think he's wrong
Also, extremely frustating is not being able to find a good doctor with the ability and vision to treat the whole picture instead of just the individual parts. All the Doctors I've heard of who are known for being able to treat the entire individual do not take any insurance, even the guys I hear on the radio speaking about problems like mine. (I live in the NY Metro Area).
I firmly believe that this has a bio-chemical origin that is related to aging. I don't think there is one magic bullet, but I think that if I was able to find the right doctor to treat my entire system including bio identiacal hormone replacement, I would be on the road to recovery.
Instead, I think I'm on the road to the [U]morgue, [/Uor worse, as a vegetable in a nursing home.
I can relate to what you are saying regarding the cpap machine, i have a vpap but its more or less the same, i have had it for 9 months now and i do feel great after a nights sleep,as you before i was tired all the time and was having 700+ apneas over a six hour period ...anyway the point im making is ,like you i could not stand the mask on my face and i felt starved of oxygen when trying to take a deep breath,, but after having the pressure turned UP i can now breathe a lot easier. As for the mask i will just say it takes getting used to, but you will get used to it..you just have to give it a go..good luck..
Thanks for the reply. I've got to tell you, while I'm waiting for the insurance co. to get me the bi-pap, I've turned my cpap up from 8 to 12 to try to get used to an increased pressure. There is so much air blowing in my lungs, it actually hurts my chest after a while, and the full face mask doesn't seem to be able to contain all the air, no matter how I position it, loosen it, tighten it, it always finds an escape route through the gasket and into my eyes. It's like gunning your car engine with your foot on the break, it rises way up off my face. I've tried it for about 2 weeks now, and I think maybe Ineed to find a diffent mask than the Resmed Mirage Quatro. I've seen some on the internet offered by 3rd party suppliers.
I just don't see how I will be able to tolerate a setting of 16/14 after investing in a new bi-pap. I can only sleep for about 1- 1.5 hours before the ramped up pressure wakes me up.
Any thoughts? You sound like your OSA is more severe than mine. Problem with mine is that I apnea'd all the way up through 14cm during my sleep study, and only then did they diminish in number and severity, but did not go away completely. Do you get much Stage 3 & 4 sleep? In my study, I only get about 3% and that's after about 6 hours of sleep. I'm falling apart. Sleep deprivation screws up every system in your body. People who don't have it don't fully understand how sleep can have such an impact, they think 'get some sleep, you'll feel better', end of story!
Have you found any supplements or sleep positions or excercises to help? I wish there was a soft palate excersise to increase muscle tone back to youthful levels, pre-apnea!
Hello again Jeff, it seems you are having a time of it ..here in the UK we obviously do it differently than where you are, by that i mean,when i had the sleep study done i was told the next morning that because of the severity of my "condition" i was not allowed home as there was not an available vpap machinee for me ,so i would have to stay in hospital,, 3 weeks later and i get my vpap..I understand that in America you have insurance for medical issues, here we dont, so what im getting at is i was told the number of apneas and that not using vpap i would die...scary thought when you hear it, but my machine was set by the respiritory consultant..and when i visit him each 3 months he adjusts it to suit...so i dont know about 3rd stage sleep im afraid..but i can say to you is this i have the full face mask as you and after many different adjustments to the straps i have a good fit now when the flow was leaking at the nose and going in my eyes i tightened the straps at either side of chin and it has cured that problem ( still get some leakage from under chin but it does not leak enough to warrant adjusting anything else ,although when you do find a good fit,when washing the mask be carefull not to undo the straps ,as i had done and took ages to get them set again. did you get the 3 inserts with the mask ? if so try using a different size as i had to when i got the mask ,they gave me the middle size,but i had to use thr largest of the 3 for my face....so again persevere it is worth it . also i had the ramp turned off..as i was having same as you a blast of air that i couldnt cope with .now the ramp is off its great....i now sleep on average 9 to 10 hours a night and feel refreshed and can stay awake all day..when at my worst 15 minutes was all i could stay awake for...so great to have my life back...i do go on a bit but as i said stick with it , you will beat the "mask"..and try with the ramp off..i have to go to clinic for adjustments but believe you can do it at home...and finally i find sleeping on my back the best, but i wander in bed so whatever you find best go with that..again good luck ...i will hear how you go ..
Thanks again, David. Yes, here in the US they won't tell you anything in the sleep clinic. They send you home to wait for the doctor to call, and tell you it takes 2 weeks for them to 'read' and interpret the results. Then I go to the Pulmonary Specialist/Sleep Doctor who can't find the test results at first, and is reading them for the 1st time 1 month after the test, to tellme basically the same thing they told you, that I will have a stroke/heart attack or something else if I don't use the correct machine at the correct setting. It's been 3 weeks since my doctors visit and I still have not gotten a call back from the Medical Equipment company, despite at least 3 or 4 calls begging for a return call, and despite 3 or 4 calls to my doctors office to speak to his assitant who assure me things are in the works. THis is our HealthCare system when you belong to an HMO, which costs me $12,000 per year for a family of 4. If you are not wealthy, you cannot access good health care. You have to see a 'Primary Care" Physician who acts as 'gatekeeper' to give you referrals to other specailists, otherwise the insurance will not pay. Then when something costs money, like a vpap or bipap machine, they have to [prove that it is medically necessary. The Doctors get bonus pionts for NOT spending the insurance companies money, and they have to see about 30 - 40 people a day to get by. so that gives each patient about 7 minutes with the doctor.
And everybody here is afraid of 'socialized medicine'. It is rediculous, frustrating, and dangerous to ones health.
I could go on also, but maybe I should move to England!
Hi Jeff,your medical system has its flaws for sure.we are lucky in the UK to have free medical services ( although when your in employment a portion of your salary usualy about 15% per week goes to national insurance..so its not really free.but when out of work its free to access medical services )..
I can agree with the points for doctors system, here in order to get disability living allowance, the government send out "a qaulified medical practioner" who determines whether you are eligible for DLA..i have so far been fighting my case for 14 months with a hearing due in 6 to 12 weeks..but it is interesting to note that per visit the "doctor" is paid 250 pounds..and every case he rejects he gets an additional 50 pounds..so why wonder so many people are turned down..as all walks of life greed is a major factor...i will fight it the whole way but it is very frustrating waiting for something i am entitled to and have paid for over the last 25 years..so maybe your system doesnt seem so unfair afterall..thanks...david..
Just as a partial antidote to azman's woeful commentary I will describe
my experience via Medicare. My PCP recommended a sleep study at
a facility 50 miles distant. I was scheduled for and did my first study
in about ten days. Less than a week later the sleep doctor who is also
credentialed as a neurologist and neurophysiologist called me in and
went into detail about the results and scheduled me for a titration
sleep study for CPAP. I felt so much better the day following my test
day with CPAP I phoned the sleep center and asked the doctor not to
wait a week for my followup. He had me in the next day and phoned
ahead to the facility supplying the CPAP materials so they would be
available for me thaty day. By the close of the next day I had my shiny
new CPAP ready to go. Since then he has come to my city for follow
up visits to evaluate my progress and I have phoned him twice and he
has phoned me back the same day to answer my questions. This was
all during the past two months. I know it sounds like a fable and I am
usually very critical of the state of medical practice but this was a very
refreshing counter experience so I wanted to share it.