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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
lovelylola
 

scared

Postby lovelylola on Mon Oct 30, 2006 7:23 pm

Hi My name is Linda and i just found out that i have sleep apnea. Before i found out i thought i was really losing my mind. I would wake up all the time trying to get air in me @ least 10-15 times a night. always tired ,moody. My Dr told me about this sight and suggested i look into it. he said there are people i can talk too about how i feel. At first i did not think this was something serious,but iamb learning more everyday,and now all i do is cry. does that go away ,when will i start feeling better do i have to sleep with that mask every night forever. Do people really never wake up?
Please someone talk to me. People on my job think it's funny they make jokes about me sleeping with the mask,and say it's no big deal. i'm always nervous my heart races i feel like i haven't slept in weeks[/b][/quote][/list]

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svh
 
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Postby svh on Mon Oct 30, 2006 7:31 pm

I felt really sad about it, too, for maybe three weeks. I did cry. I am married and hated the idea of sleeping with a mask--who wants their partner to see them in a mask--it's just not attractive! (And he was nothing but supportive, btw--it was all me.) I eventually came around to accepting the whole idea, and bizarrely, I admit, getting excited about buying new stuff (yes, I can be shallow at times, but it did help me get over the denial phase....)

I'd be happy to chat by email if you need support. I have been actually on CPAP for three weeks now, and it is helping. It's not perfect at this point; I'm having the usual sorts of problems, but it isn't as bad as I'd expected.

I hope you feel better soon, physically and emotionally.


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bdp522
 
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Postby bdp522 on Mon Oct 30, 2006 7:49 pm

First, welcome to the forum. If you let us know what equipment you have, you can get better answers to your questions. If you haven't already, click on the lightbulb. It will get you all kinds of information about cpap.
Second, everyone is different. Some people feel better right away, others take more time. Some take months to feel a difference.
Third, Yes, you have to sleep with the mask(and machine) not just every night, but even for naps. Every time you sleep without it, it sets you back a bit. I know that after 3 months I can't sleep with out it. I tried and couldn't go to sleep! You do get used to it.


If you are very nervous or upset about it you may need to speak to your MD about medications to calm you down while you get used to this new way of life. It can be scary, and it can be hard to get used to. The trade off is that with better sleep you feel better. You won't be as tired or moody.
If you have problems you can always come here to ask a question. There are many experienced pappers who are always willing to help. You can also go the chat room if you see someone there and 'live chat'. Sometimes just talking helps.


Brenda


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Postby Kazoo on Mon Oct 30, 2006 7:49 pm

Everyone here knows how you feel Linda. I'm an old "pro" of 45 days and I can't imagine going to bed without it. You might even have the wrong equipment. Most of us started out with different machines than we end up with. Myself, I couldn't do the cpap. Always ended up with it on the pillow next to me with no idea when I tore it off. Couldn't do the back pressure. Now I have a BiPAP Auto with Bi-FLEX and it is Heaven! No back pressure that I notice. So keep trying and talk to the good people on this board.


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GoofyUT
 
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Welcome!!

Postby GoofyUT on Mon Oct 30, 2006 7:50 pm

Welcome to the wild and wacky world of hoseheads, Linda!!

It IS shocking when we were ALL first diagnosed. It conjurs all sorts of HORRIBLE images in our minds about sleeping attached forever to some ugly, noisy machine, wearing a FABULOUSLY unattractive mask with a HUGE hose coming out of it.

But the reality is, IT AIN"T THAT BAD!!! First off, it IS critical that you take this seriously and stick with it. What happens is, when your upper airway closes (because the musculature surrounding it relaxes, especially with age), you stop getting the proper amounts of oxygen that your body needs. Your brain senses this, and will try to wake you up by releasing a bolus of adrenaline. This in itself is a desperate measure that the brain takes, because tghat bolus of adrenaline is VERY damaging to the body. It causes sharp increases in your heart rate and blood pressure, and affects various other organs (such as your kidneys) in damaging ways too. That's why sleep-disordered breathing (SDB) is an INDEPENDENT risk factor for heart disease and stroke. You can have NOTHING else wrong with you, and still bear an increased risk for stroke or heart attack if you have SDB.

But the good news is that CPAP treatment is VERY effective and safe! The machines nowadays are VERY quiet, effective, easy to use, and in many cases, INTELLIGENT! Masks come in all sorts of varieties and its easy these days to choose one that fits you well and provides effective treatment AND fits your lifestyle as well!! Many couples make it a couples matter to choose the mask that THEY like the best, and the comfort and health that derives from this, especially the CESSATION of annoying snores is NIRVANA for lots of folks who ahve been forced into separate bedrooms because of the sleepless nights or snoring.

You've come to a WONDERFUL place! There are SO MANY here who have gone through JUST what you are experiencing, and we cann all HELP YOU and one another yo understand this whole confusing experience and make a good life WITH CPAP!!!

I am SO GRATEFUL that I was diagnosed. Unfortunately, it took my own heart-attack to get me there. But since, I am blessed with consistent nights of restful 8 hours worth of sleep. I feel SO much more alert and SO MUCH HAPPIER!! I have become more physically fit than I've been in 30 years, and I've lost a TON of weight to boot (a FREQUENT benefit of going on CPAP traetment). I'm looking pretty BUFF these days! I go to the gym 5 days a week, have maxed out my treadmill, and when I'm not in the gym, I am hiking Utah's beautiful canyons. Before being diagnosed, I would be sitting around, MISERABLE from sleeplessness, depression and obesity. CPAP has GIVEN ME MY LIFE BACK, and then some!!!

Now, it ain't gonna be easy at first. Its VERY coonfusing and you have a LOT to learn about all of this. But, we'll be here EVERY STEP OF THE WAY to help you with it!! After all, EVERY one of us has been EXACTLY in your shoes!!!

So welcome Linda!!!! Its GREAT to meet another hose head!!!

Chuck

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SelfSeeker
 
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Postby SelfSeeker on Mon Oct 30, 2006 8:00 pm

Linda,

Until, I respond, I wanted to tell you that anytime you want to talk live click on the Chatting Live, and someone may come and join you for a chat.

Usually chat is busy in the evenings.

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I can do this, I will do this.

My disclaimer: I'm not a doctor, nor have I ever worked in the health care field Just my personal opinions.

bsil
 
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Postby bsil on Mon Oct 30, 2006 8:14 pm

Linda-
Before I was diagnosed, I knew that something was very wrong with my breathing. I could feel myself choking as soon as I would lay down. Most nights I slept in the recliner chair...but I still had apneic episodes even in that position. I hated evenings when it was time for bed. I actually dreaded going to sleep.

I was so relieved to get a diagnosis that I knew there was an intervention for. I am no longer afraid to sleep! My auto bipap machine allows me to sleep without anxiety. I am now dreaming again.

I will be honest that it look me about a month until I was sleeping straight through the night. But I was determined to make this work for me.
The wonderful people on this forum are always ready to help answer any questions that you have. You will get used to it, but you must be patient and determined. You should probably do phone interviews with the Durable Medical Equipment (DME) companies. Some are better than others. Some let you have trial with different masks, until you find one that suits you. Some let you try different machines, until you find one that suits you. Be a saavy consumer.
Good Luck,
Barb


justsharon
 
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Postby justsharon on Mon Oct 30, 2006 8:25 pm

Dear Lola,

When I was first diagnosed with Severe Obstructive SLeep Apnea and started reading more information about it........I got scared. REAL scared. I'm an ER nurse and after some research I realized what was happening to me and how the mask could help. I got excited about fixing my health issues.

It took me a good 2 months to get really comfortable with my equipment, but with the help of some really nice people on here. I have tweaked my machine and mask until now I actually look forward to putting on that mask and getting a great nights sleep. I sleep ssooooooo sound. I strap that head gear on and I'm asleep in just a few moments. I feel great in the mornings when I get up too.

My husband loves the mask......says it sounds much better than my snoring. AND he has stopped sleeping in his ear plugs. So HE sleeps better too.

We have a serious medical condition and we need to wear a mask at night to help us breathe while we sleep. Thats the way it is. It's not easy at first, but it gets MUCH better. And you'll feel the difference soon. I know I do.

Happy sleeping,
Sharon

lovelylola
 

Thanks everybody

Postby lovelylola on Mon Oct 30, 2006 8:26 pm

Thanks guys ,i thought nobody was listening. I was wrong.
I have the cpap with the nasal pillows system. Can't seem to keep it on all night,find it in the bed on the floor,real pain. Thank God i live alone. i get real bad headaches do you guys get them too? i am always off balance and get confused real easy lately. It's having a bad affect on my job which i am customer service rep,lots of stress Just got out of hospital saturday took me from work felt like i could not breath pressure was high,and heart rate was up,is that normal?Iai amso moody lately,Dr has me on all kinds of pills.Is that good?
:( i am glad that i'm not alone anymore.Thanks for listening


dalamar
 
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Postby dalamar on Mon Oct 30, 2006 8:38 pm

Lola,

I just recently got my CPAP machine, so I know exactly what you are going through. I am having a very hard time keeping falling asleep with that mask on and then keeping it on all night. A lot of times I wake up and take it off and then I realize what I am doing. I start to go back to sleep without the mask and then I think about how bad I will feel when I wake up and I force myself to put it back on again. If I sleep without the mask I will get really bad headaches, too, and I ill also have to take a 3 or 4 hour nap as soon as I get home form work. I just keep trying to make this thing work. Sometimes I will go lay in bed and read for 30 minutes or so before I try to go to sleep just to get used to having the mask on and the air blowing on me. I am hoping that the longer I am using the machine, the easier and more natural it will become. Stick with it, though, because I can tell you that it feels so much better when you manage to keep the mask on all night. Good luck and no, you aren't alone.

Dal


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bsil
 
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Postby bsil on Mon Oct 30, 2006 8:40 pm

Linda-
While you were in the hospital, did they stabilize your blood pressure? Did they put you on blood pressure medication? Did they advise you to buy a blood pressure machine for use at home? The headaches could be from high blood pressure AND/OR is also a side effect from untreated sleep apnea. You have been getting very poor sleep and this could be a reason for you having difficulty concentrating at work. This will improve with CPAP therapy. You should be in close contact with your personal physician regarding feeling "off balance and get confused real easy". You want to make sure that there isn't something else causing those symptoms. How is your blood sugar? THe moodiness is again probably from lack of quality sleep as well as your concern over your diagnosis.
Let us know what kind of machine (brand & type) and type of nasal mask; along with the settings that they have set for you. Do you have a copy of your sleep study results...if not you should ask your MD to send you a copy.
Barb


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kteague
 
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Scared

Postby kteague on Mon Oct 30, 2006 8:45 pm

Linda,
That which is unknown can be scarier than hard truths. When we can't see the boundaries of what we face, it's hard to restrict the dread. You are doing the right thing to begin to be informed about your new diagnosis. The more you learn, the less free-roaming dread you will have. You have some challenges before you, but this is not uncharted territory. Others have walked it before us and scouted out "CPAPLAND", and those experiences are recorded here for the benefit of new or struggling cpap users. This is not the beginning of something bad, but rather, the beginning of a healthier time in your life. Scarier would be for you to be undiagnosed and untreated.

About those who don't understand - they can't if they haven't experienced this, but that is no excuse for insensitivity. But unless you tell them, how can they know they are hurting you? Tell them you have yet to find humor in this and would appreciate if they would respect your need to be treated with dignity in regards to your diagnosis. These same coworkers would probably never make fun of someone's wheelchair, cane for the blind, or hearing aid. You would be doing them a service to let them know that their jokes are unwelcome, and thus inappropriate in the workplace. Quite probably the day will come when you'll be making your own jokes. Till then, they need to follow your lead.

You have every reason to be optimistic about your future, but your mind, body and emotions may be too ravaged by the apnea to believe that right now. Be diligent day to day about your treatment. You'll be surpised how different things look from a rested perspective.

Kathy


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Postby Julie on Mon Oct 30, 2006 8:49 pm

Hi, and I'm so glad you've come to the forum and know you're not alone (why does that make such a difference :)?! One thing has struck me in your two notes - that not only are you dealing with learning about OSA and CPAP, but I think your chronic fatigue and anxiety may have tipped you into a little real depression, and you might want to talk to your MD about it because it's so easily addressed. The fact is, it may take you a little while to stabilize on Cpap (whatever type you end up with - and I would suggest you try some nasal masks as well as the pillows [which never worked for me], and if you're having to deal with depression on top of it all, it's going to be harder, even if the CPAP helps your physical state and you feel better from that standpoint. Good luck and stick around!


Born Tired
 
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Postby Born Tired on Tue Oct 31, 2006 10:08 pm

Hi Lovelylola,
Welcome to the forum. This is not an easy road, but there are lots of very nice people who are very supportive here. There were times that I wanted to throw the whole contraption out the window, but hey, it costs too much! :P So I'd come back to this forum to learn more about how to cope. It was very encouraging to know there were lots of others going through the same things. Took me over a year to find a mask and machine that I could be comfortable with. Now I'm 100% compliant and although things aren't perfect, I feel sooo much better than I did preCPAP.
Hang in there. Some improve very quickly and others take a bit of time. Don't give up. Just considered this an adventure. :wink:
Esther :)
__

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lawdognellie
 
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Postby lawdognellie on Wed Nov 01, 2006 2:56 am

I'm probably very different from everyone else on here, but I thought I'd share so you can see how similar and different everyone's story is. I never woke up, have never been told I snore and had no idea I had apnea. My only "symptom" was EXCESSIVE overwhelming fatigue. I'd sleep 14-20 hours a day and never feel better. I was told it was psychiatric, I was told it was medication, I was told I had mono (not), I was told I had a mysterious infection and even hypersomnia from no known origin. FINALLY (8 years later), my shrink had the brilliant idea to send me to do a sleep study--and walla--here I am.

I'm probably the only person that was relieved they had sleep apnea. It is my one and only diagnosis that has a treatment available. The mask does take some getting used to, as everyone has told you, but there are some up sides to it. I have nasty allergies and live in a farming town where everyone is walking hay fever. I have the extra filter on my machine and now I don't wake up with a stuffy nose. It also helps make breathing easier if my asthma acts up. I've been using my machine for 4 months and am only now starting to really feel more energy, even though it is not much more. The key to it is to try to find a mask that you find comfortable for your sleeping habits. I also haven't had to deal with sharing the bed with anyone (other than the cat and dog) so I'm not sure yet how I'll feel the first time I have a sleep over.....

I hope everyone's comments make you feel that you are not alone in this whole thing, becuase you're not. The airport security guy says he sees hundreds of CPAP machines everyday, so maybe it will become the new fashion fad. Just keep positive...at least you don't have to wear it out and about :)

Sarah


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