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Giving up after 6 long weeks
09-13-2012, 05:45 PM
09-13-2012, 06:18 PM
LISTEN UP AND LISTEN GOOD..... you are about to make what is probably the biggest mistake of your entire life, as short as it may turn out to be.
Have mortgage insurance, life insurance, pension insurance, loved ones, kids that you would like to see married or through college, an enjoyable job, or a great hobby? You are kissing it all goodbye as what you are being told is absolutely correct. Untreated sleep apnea is LIFE THREATENING. No B.S. Also, the moment your GP or any MD knows that you are non-compliant they are obligated in Canada and in most states to have your drivers license and any other permits that require alertness terminated immediately under penalty of law. Own firearms? Kiss them goodbye, especially if you have a carry permit.
So here is the bottom line from someone that has been there and has the T shirt in spades, my friend. Untreated sleep apnea KILLS. It might be you, someone you love that's in a car with you or someone you don't even know when your car runs the red light and T bones them. I am not suggested.... I am telling you for fact. Further, let me tell you for FACT, that if you are driving with untreated diagnosed sleep apnea and T bone someone and kill them? It is called negligent homicide, a felony, and you will spend real time in jail.
I know this is a ton to digest and perhaps a ton to believe, but trust me, this is just the tip of the iceberg.
I can also tell you that this thing is a cakewalk to beat compared to loads of other afflictions. I have been THERE as well and am STILL there. And I am betting that my misery today started off with sleep apnea. I'd bet my bottom dollar on it. I am presently fighting Atrial Fibrillation, reduced lung function as a result of H1N1 and acute pneumonia circa 2009, diabetes, hypertension and on and on. All the result of OSA and a spiralling circle downwards. I am not even supposed to be here and kicking and a happy camper despite all the afflictions.... I spent three weeks with a tube rammed down my throat on TOTAL life support in a diaper in 2009. They asked my wife if they could unplug me. Get the picture? It took six months before I could simply roll over in bed on my own.
Today I am still battling afflictions but one that I am NOT battling is OSA. And to get a good night of sleep is a blessing and it takes me about 15 cmH2O pressure and massive exhalation pressure relief and 4L/M of pure oxygen infused into the air line in order to achieve that. The sleep doc's were great but it was ME, MYSELF and I that determined that 9 cmH2O pressure was insufficient and titrated myself to 15. It was ME (with some advice from friends on the forums) that determined that I needed a pulse oxymeter and thence 4L/M of O2 to keep my SpO2 above 90% and let me sleep and heal. It was me going through 50 different masks that determined that only a full face mask was going to let me move around at night, smoosh my face into the pillow and maintain a good seal and comfort.
I have loads of great advice for those that need it or want it based on solid personal experience and education.
And I would be pleased to spend an hour or a day on the phone with you to talk you through this thing. It is not a miracle overnight cure. No way. Nobody gets that. It is a struggle, but once you reach the top of the mountain you can take a long break, breath clean mountain air and rest easy. Your battle to correct OSA will be over.
There is just so damn much to know... so much information to collect to understand where you stand and what your issues are. It would make a great book, but a better telephone conversation.
In this nosebagger you have a friend and an ear. You have given up far too easily and the consequences, if you truly have OSA, are dire. They are at best life shortening and will reduce quality of life. And at worst they will kill you dead. As was said, "you will wake up... dead" and that's about how it works at the extreme. At the lesser end, it is going to cause other issues in your life before you realize it. Try battling Atrial Fibrillation or worse. Understand that your organs and brain are not being properly oxygenated at night and suffering the results of same... diabetes. Hypertension. Dimentia. Etc.
So, here's an offer that I hope you will take me up on. I bill out in the IT business at $150 an hour. I bill out in the Free OSA advice department at $0 an hour. I am sending you my phone number and hope that you will take a moment and call me. I can't promise to be able to speak when you call but I do promise to call you back and spend an hour on the phone with you. The only thing I ask is total shameless honesty which I will reciprocate in confidence.
DO NOT GIVE UP. Six weeks is far too early and you appear to have far too little solid information to make that decision.
Phone number coming by PM/Email. Take a minute and give me a call tomorrow. I will be working but will take time out to chat. I am in the Eastern Time Zone so don't call me at 6 a.m. Anytime from 10 a.m. to 10 p.m. is great. Take a moment. Or if you want, send me YOUR phone number and I will call you on MY dime. (We have a great LD plan).
In the meantime, keep an open mind and don't give up.
THIS, BTW, is NOT a FREEBIE. It is my way of repaying all of those that provided ME with information and advice in MY time of need. And when you have mastered the art of preventing face farts and mouth breathing I hope that you will do the same.
Hang in there. YOU WILL BEAT THIS THING.
Educate, Advocate, Contemplate.
Herein lies personal opinion, no professional advice, which ALL are well advised to seek.
09-13-2012, 06:46 PM
Alright jodiramm, I'm not going to yell at you and tell you how terrible this is. That is because I lost a bunch of weight and thought I knew better than anyone and that old machine (this was before the nice new ones!) kept my wife up anyway so I stashed it in the closet. Years went by. I soon forgot I even had sleep apnea. Never even thought about it. Got mad as heck at my doctor because he couldn't figure out what was wrong with me! Why am I so tired? Why do I have these heart palpitations? Why am I gaining weight for no good reason? They ran every test in the book! Of course they had no way of knowing I had ditched the machine! I never really thought about it. This went on for years! Last year I had surgery to remove a cyst on my left wrist. The doctor asked "Do you have sleep apnea? Do you use a CPAP machine?" Well I hemmed and hawed around that question as all these sudden realizations came flooding into my foggy, foggy brain. I finally fessed up that yes, I was a sleep apnea patient but I was not using a CPAP. She said, "You will be during your surgery". She's kinda pushy that way! So there I am in preop. The nurse says "Oh, I see you are a sleep apnea patient, I just came off a tour in the sleep center" which led to a round of Q&A and a serious lecture. But I know best! Okay, I came home, thought about it for a good few months and called for a new mask. I just want to let you know that over the period of time that I had ditched my machine and the time I decided to start it back up (earlier this year) my life continued to spiral out of control in a downward pattern.
I know better than anyone that you are going to do what you need to do, but please remember that there is another way and with a lot of help and encouragement (this site is awesome!) you can always change your mind. There is no one here that will tell you that you were an idiot in the intervening years, well maybe Paula (I'm just kidding, she cares!), but everyone here is telling you the naked truth because they want to save you from going through what I went though. Yes, there is permanent damage to my health. Yes, it could have been avoided. Just understand that after you take this break (and I am praying that is all it is) that we will still all be here to try and help you. Good luck.
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.
PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
09-13-2012, 07:13 PM
Okay, everyone thank you very much for your advice and i don't take it lightly. First of all, i blame myself for not understanding my own condition and i guess i really was just thinking about how miserable i am now in the present and not looking at the future. I have had to take temporary disability from work because of having a hard time adjusting and also trying to get my medication adjusted in an outpatient hospital. (I have therapy 3 days a week with about 15 other people) I have always had problems sleeping, but this really has increased the anxiety of it and my Doctors don't understand. This is very scary to me because i don't know if i will even be able to continue to work and i am the only one that makes the money around here. One thing is fore sure is that you all have scared me enough to put the mask back on and just keep on trying and for that i am grateful. Hugs all around and sorry to have gotten so many people worked up.
You might try this mask. I've used it and it is very comfortable. The mask is comprised of a mouthpiece, similar to one used in sports. The mouthpiece is heated in water and then placed in your mouth against your top teeth. After 5 minutes, remove it. The mouthpiece molds and holds to your top teeth while sleeping. It has a curved plastic frame that attaches to the mouthpiece with nose pillows that clip onto hoses and you can adjust them in, out, up and down. There is no straps or anything that holds the pillows, just the mouthpiece. It is very comfortable and for me, makes the tightest seal.
I'm just a customer and don't work for them. I don't think I can list their website per rules, so you can PM me if interested. I get nothing out of it, but the mask works for me. I'd give it a try before quitting. If you sign up for their email specials, you will find it goes on sale about every other month or so for almost half price.
09-14-2012, 07:52 AM
mdrevs, can you insert a picture of the described mask?
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.
ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.
INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINIONS ONLY AND NOT NECESSARILY STATEMENTS OF FACT.
09-14-2012, 03:27 PM
The name of it would be better than an image. You can name the mask or the company, unless the company name ends in '.com'. In that case, you can only list the first bit of it.
Instead of links or images, we usually say something along the lines of 'Google MyFaveMask for info'.
Apnea Board Moderator
Breathe deeply and count to zen.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
09-15-2012, 12:10 PM
I'm new here, I wanted to share a little of my story with you - as I'm at about 5 wks myself, with ABSOLUTELY NO RELIEF YET.
I tend to stop things like this, when I see no results..but.
I didn't look into your backstory, so forgive me if I'm missing something.
I've struggled for the last 3 or 4, maybe even 5 years or more with sleep issues. (I've always had some issues, but they've gotten worse and worse over the years and now they're just plain hell)
I'm up all night. I literally live, work and function on less than 2 or 3hrs a night of INTERRUPTED sleep. I sleep for about and hour, up for 2, sleep another hour or maybe 2 and its time for work. I wake up in rooms with no idea how I got there. Sleeping standing up in a corner of the kitchen. I fall down and hurt myself. This has gone on for years, and is still going on under CPAP therapy.
My doctor, upon seeing my sleep test results, freaked out. Called the sleep doctor and demanded they get me in for my titration study that day. (It actually wound up being 3 days later, but that was a good result IMO)
My results were so far above what was "severe" OSA.
He told me "you will be dead at 40" - (I'm 40). It scared the hell out of me, I have a wife and 3 children that I'd like to be around for.
I was excited about it, maybe it would "cure all my problems". It turned out that I was totally wrong. But that doesn't mean eventually it won't help, and that I won't get the hang of this and get more comfortable with it.
I've been through different nasal pillows and masks. I don't like any of them, but I've managed to get used to the one I have atm.
So I'm still struggling with it, not seeing much difference, but I'm not quitting because I have too much to live for.
The whole process is tiring, cleaning it, setting it up every night, trying to sleep with it strapped to my head. The whole extra routine involved makes me want to take it off. But I look over at my wife, and I try to sleep. Sometimes I do, and sometimes I don't. At this point, what's the difference? I've battled with this crap for years now. Its not like I was sleeping anyway. I know this may not be your case, but you at least see where I'm coming from.
I've taken a look at my data (that's another story). It actually is helping, when I'm actually asleep. I've actually gotten a couple of nights with 4 hrs of use. I have few if any apneas, still several hypopneas, but it's WAY better than what my tests showed. I think the AHI was never above 7 or 8. Which is way better than 69. So it must be working - when I'm actually sleeping.
With the help of this board (Hello everyone & thank you btw), I changed my unit to Auto, with Senseawake. I think I've noticed a difference in the last few days. Hopefully I'm on to something.
I just have to keep working at it. Maybe somehow I'll get my sleep patterns straightened out and it will. I have more work to do and I'm not giving up on it.
I hope you might rethink your decision. I think if you explained the situation to your Ins. maybe they'd understand.
09-17-2012, 10:20 PM
(09-14-2012, 07:52 AM)PollCat Wrote:
I think the mask in question is the "CPAP PRO Nasal Pillow CPAP Mask"
"Goodnight Chesty wherever you are!"
09-18-2012, 02:27 AM
Jodiramm, hang in there. I've been on CPAP now for just over 2 years, and it took me about 6 to 8 weeks to fully get used to it.
I had huge problems with air leaking, not getting enough air, too much pressure, and not enough sleep. For me personally, I have to have the mask straps very tight, and I was able to reduce my pressure from 12.5cm to 11cm, and had no problems since.
It's a downright pain having to sleep with a nose mask, but it's much better than the alternative - falling asleep at the wheel or at work.
I wish you all the best, and hope that you will eventually get enough sleep.
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