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Sleep apnea
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californiafeather posted:
I have been diagnosed with mild sleep apnea... so i gotta wear one of those cpap machines. i have to wear a complete face mask that goes over my nose and mouth. now the machine doesn't work.... i've gone to an overnight study nothing. next they wanna do an overnight study along with a day study. but that won't be possible for the next few months (they are back logged). anyways, it's getting annoying. i'm unrefreshed... i feel so unproductive... how should i deal with this? it's been over four years and i'm getting so pissed off about all this. anyone else dealing with apnea? thanks!
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LUCKYME09 responded:
I was diagnosed with sleep apnea about 1 month ago, right after my quadruple by-pass surgery. And, no, I am not that old, only 46, and its my 2nd heart attack. They put me on a full mask, CPAP machine, and I hate the stupid thing. I want to throw it out the window; now ITS the reason I wake up at night. However, I have been dealing with problems that I did not know where related to the sleep apnea for so many years that I am willing to give the machine some time before taking a hammer to it!!! The machine is starting to make a difference now. I feel better during the day, and don't have that feeling of total exhaustion every single day. I used to sleep for days on end; my poor husband didn't know what to think and neither did I until the sleep apnea test showed the problem. We know the apnea is PART of the reason I had 2 heart attacks, so don't take it lightly. I was so annoyed at everything I was going through I just gave up; about 30 days ago I said that's it, I've been dealing with this same crap for over 8 years and I cant take it anymore. I stayed in bed, didn't even bother to go downstairs to my kitchen to get water, got somewhat dehydrated and extremely depressed. Then, I decided this stupid crap wasnt going to get the best of me, got up and started all over again. Just wait it out, it will get better!

Don't give up. Keep asking questions. I have yet to actually find a doctor that really gives a s(*& about you; you have to be extremely active in your own health because no one else will. Sounds synical but I speak from experience. Do research, try different things, try stuff other people suggest, just keep looking for the answer that is right for you!!!!
 
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cjh1203 responded:
I have been using CPAP for about six years. I still have trouble sleeping, but it's unrelated to the sleep apnea, and the CPAP has definitely helped. I'm still tired a lot of the time, but I don't fall asleep at stop signs or the second I sit down any more.

I went through a very long and extremely frustrating period after starting to use CPAP, trying to find the right mask. The mask is the key, and there are so many kinds that you should be able to find one that fits well and is comfortable. Your CPAP provider should spend a lot of time trying to help you find the right mask, and not just say, "here, use this one". You can also check out www.cpap.com, where you can see a large variety of available masks, as well as reviews from users.

There used to be a CPAP support group in our town, and it might be worth checking to see if there's one in yours.

Sleep apnea can kill you, so don't give up.
 
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socialworkerbyprof responded:
Sorry to hear you have to go through all of that. I've been diagnoses with severe sleep apnea and the cpap did nothing to help. So they suggested I go through more test to rule out narcolepsy. I didn't meet all of the criteria for narcolepsy, but continued to be severely fatigued. I just turned 30.

Feeling tired all of the time is a horrible feeling. your mood is crabby most of the time. i know my kids miss out on time with me and I time with them. The only thing I can suggest is to talk to your doctor and rule out everything else. Thyroid disease, anemia, vitamin deficiencies all create fatigue. Sleep apnea may be a compounding factor, not the sole factor.
 
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homegirl24 responded:
I have had obstructive sleep apnea for about five years, maybe more, but was not diagnosed until about that time. i thought my sleepless nights were due to many things, but not that. I have used the cpap and because we don't get along i can't use it. i did try for about a year and i would get very claustrophobic with it on. i also sleep with oxygen, my oxygen levels drop dramatically when i sleep. have used a face guard and that went out the window also, i am now with a mouth guard and am working with this now for about 8 months. i love that i can finally sleep without anything on my face. it takes some time to get used to, but i feel so much better when i wake up in the morning. insurance will pay for it because of the sleep apnea. i was willing to try anything to feel better and i know that you all will too. good luck!!
 
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stargazer0413 responded:
Hi CA/feather... Been on CPAP for nearly 8 yrs now. Made all the difference in the world; however, early on, like you, I hated the face mask, only I didn't have the "complete" one, just the one that covers the nose. Hated the straps, hated the tightness around my nose, and those straps... they nearly drove me nuts. My friendly respiratory therapist suggested something called the "Nasal Aire" which doesn't use all that head strapping. Instead its a largish, soft nasal cannula, w/two narrow air hoses that connect to a "Y" yoke on a swivel, that connects to the air hose and the machine. After thinking, "I can't have that thing in my nostrils; it'll be like picking my nose w/both forefingers" I realized how wrong I was! Took about a hour to get used to, and when I woke up next morning I discovered how great it was to have, for the first time in many yrs, feel like I had a good night's rest. Now? Many yrs later, still using, sleeping well, and thanking whomever invented this great gadget. Very simple to put on, easy to disconnect for those "wee" hours of the night needs (just separate the device from the air hose at the "Y" yoke, get up, go, return, attach, back to the arms of Morpheus. Check out product web site and see the ease with which it can be worn; there are two ways. I prefer not to use the head band method myself. Good luck and pleasant dreams.

bw
 
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gerry911 responded:
I have now been on the CPAP for almost three years and it can be a bit trying getting use of the machine. I have a full masked Fisher Paykel mask! My opinion, sleep Apnea that is not a refined science and I really can't put much value in the overnight study. Hooking one to twenty plus leads in strange and uncomfortable environment and drawing a conclusion on sleep quality is questionable at best. I am sure the experts will disagree with me, but this is my conclusion following two sleep studies! Following the first study the Sleep Doctor told me that I had Sleep Apnea and recommended a CPAP. The technician set my unit at 4 CM H2O. It took me several months to adjust. I had a few anxiety attacks, which resulted in me destroying the first CPAP mask in about three months. The masked was a Fisher Paykel Acclaim model 101 which didn't work well. I glued it together and made it last six months and the anxiety attacks are gone. I am partial to the Fisher Paykel as the silicone masks seems to seal well to my face! All in all I thought I was doing quite good with after about six months, but I don't move much during my sleep. After about eighteen months, I switch insurance provider and had to change Sleep Doctors. When I initially went in for a visit, the technician told me that he knew of no one at 4 CM H2O settings and that the lowest he has experienced was 12 CM H2O. I replied back that I was comfortable at this setting and felt that I was getting a good nights sleep. Well, they wanted to run their own study which I agreed to. During this study I don't believe I slept for four hours and the lady running the study told me that in her opinion everything looked good. Two weeks later, I got a call informing me that the doctor had reviewed the study results and recommended increasing the CPAP setting to 14CM H2O, which I strongly disagreed to. I took the unit in and the technician reset my CPAP to 12CM H2O. Increasing the setting resulted me sleeping from seven to eight hours to three to four hour. The seal around the nose would leak, the bypasses air noice would wake me up. My throat would be sore and dry and on and on. I called the sleep doctor and told him that the new settings just were not working out and I needed the machine set back to the original setting, which he strongly disagree with. I told him that either they reset this machine or I was going to do it myself. The technician told me that I was not allowed to change the setting as the doctor must prescribe the setting based a the study information. A week later they called and agreed to lower the setting to 8 CM H2O. This help a little, but in the end I still was experiencing difficulty getting a good nights sleep and my wife was commenting that I just wasn't looking good. In the end, I reset my CPAP machine to 6 CM H2O and have been getting seven to eight hours of sleep. I do use the ramp up which is preset to start off 4 CM H2O and within 40 minute in will gradually increase to the 6CM H2O. It is my opinion that everyone is different as I know of friends that are 17 and higher number and have no problems sleeping. Personally, my body cannot tolerate the higher pressures as I am not a sound sleeper. Hope this helps
 
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despierto responded:
I had a few studies about my sleep apnea, results: severe sleep apnea.

I have tried, over the years, quite a few different cpap machines.

The last 2 weeks I have not used the machine. Instead, I tape my mouth at night and I have noticed that I do not feel sleepy during the day time as when I used the machine.

I buy a tape that is easy to remove.

Good luck to us.
 
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cybershadow58 responded:
Ca-feather:

My sympathies are with u...this is no easy task! It is a serious condition w/ marginal effective methods (at this time) for solutions & treatment!

My case: dx obstructive/central nervous sys 'extreme' sleep-apnea '04...was told 15 years before that i had a sleep-breathing prob..no dx. Unsuccessful use of CPAP for 3months= gave up! 2009 overnite sleep study= extreme sleep-apnea/ obstructive mostly & cen. nerv. sys....increased my air pressure Rx..able to use cpap about 30% of time...helped a bit...not much really! After 6 years of attempted use of CPAP...only successful about > NATURE'S RITE- "Sleep Apnea Relief." At this point, for me, it is imperative that i investigate all possible remedies for this "Insidious Condition!"

Best of Luck...my compatriots in our Quest for the Holy Grail (answer) to sleep apnea!!
 
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Pianoman57 responded:
I kept my wife awake at night because of my heavy snoring. When I woke up each morning, I was to the point of exhaustion where I felt as if I hadn't been to bed at all. I dragged through the day and was glad when each day was over. I took a lot of naps. My job requires me to work in the early evenings as a television videographer. Sometimes I was bearly able to make it through my shoot. When I got home, I immediately hit the bed, sometimes without even taking a shower. My wife would tell me, "If you take a shower, you'll feel better". I was too tired to take a shower. Someone told me about sleep apnea and I seen a doctor. Took the sleep tests on a Friday night, and a week later he called me in. I got my first cpap machine, and a year later, I am still seeking the right mask to use. I have tried just about all them and still can't find the right one. I checked into a website that had a mask for sale. www.nomask.com. My insurance wouldn't cover it, so I am still looking. I have even came across another website called, www.webmd.com. An article they had told about having "heat surgery". They burn enough of the tissue off where you don't snore and the procedure is suppose to last for 3 years. They say - no more sleep apnea. I'm kinda hesitant about that. I'm still searching for the right mask. If you want to email me, write to pianoman1@fewpb.net Thanks, Dave
 
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grandmavicky responded:
I also suffer from mild SA and could not adjust to the mask. It really stressed me out wearing it. I finally realized that my body only requires about 5 hours sleep. I make myself stay up late and go to bed about 12 midnight. I take Ambein CR and even that takes about one hour to start to work. Once I fall asleep about 1:30 or so, I sleep very well. If I try to go to bed earlier it just doesn't work. But I had to experiment with different bed times to realize that my body just won't sleep any longer, no matter how much I want to sleep, my body does not require it. Good Luck !
 
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MiJim responded:
I was diagnosed with sleep apnea in 2008(after THREE sleep studies!,) the results of which I have not received, other than being told by technicians that "you have sleep apnea." No consultations with, or information received from, a doctor. (I believe there was at least one doctor involved because I did receive one thing--actually, three things---billing statements!) I suppose I could be looked at as stubborn for not inquiring about the results. However, I am of the belief that the holder of the information has the obligation to inform me of the results which he/she/they possess. I have since then, seen another doctor at a different facility, and , among other things, was told that the obstructive sleep apnea which I was first diagnosed with, became complex sleep apnea due to the sleep studies! Go figure that out! But they will be happy to do a fourth study(due to "bureaucratic" reasons.) I do agree with the others who have commented about the uncomfortable equipment(I believe I tried every mask that's made---except the Nasal Aire spoken of in one reply to californiafeather.) I felt as though I was suffocating in most instances, and the masks did not stay tightly fitted. I am about to undergo cardioversion(when it can be scheduled,) although this will not "cure" sleep apnea. It may, however, benefit my condition, until I can get some actual sleep apnea relief. In conclusion(listen to the applause!,) I agree that there seems to be some lack of sensitivity to such a serious condition on the part of some, not all, providers. The experiences of other contributors seems to bear out what I have read about approximately half of C-PAP users being satisfied. Not a comforting statistic! I am going to seek out information on the Nasal Aire.
 
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immerrda responded:
I'm not sure what you mean by "now the machine doesn't work." I've had a couple of interesting experiences that show me how much my machine helps. Back in April my mask broke and I had to go one night without using the machine. I could barely function the next day. After using the machine the very next night I could tell a big difference.

I have fibromyalgia and have been extremely tired for months. While my pain is managable, I'm just too tired to do anything. Several months ago I was diagnosed with diabetes (pre-diabetic). I was put on medication, changed my diet, and started exercising. Diabetes can make you feel exhausted. Last week I saw my doc again and we were both ecstatic that my A1C had dropped from 7.0 to 5.7 in five months time but my blood pressure was up slightly. However, I still feel wrung out like a limp dishrag.

My 19-year-old son had a sleep study done at the end of November and I was guessing his sleep apnea was at least as bad as mine. And it was. He stops breathing an average of 60 times per hour and his oxygen levels dropped to 74%. When we set up his new machine and turned it on level 4 just about blew me away. He has an auto cpap that ranges from 4 to 12.

My machine is set on 17 and doesn't blow as hard on 17 as his does on 4! I think I finally found the problem! I don't like the machine and it took me a while to get used to wearing it. Tomorrow I call the place that handles my cpap and see about getting it fixed or get a new one!

The place that you get your machine should check it every year to make sure it works right. I've had mine almost 8 years and didn't know this until my son got his machine last week! Get your machine checked ASAP! Good luck and restful sleep wishes!


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