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Too Young For Sleep Apnoea?
#11
RE: Too Young For Sleep Apnoea?
Maybe your pressure is too low or not the right pressure for you. If you are using software like SleepyHead, you should see what your pressure is and what problems you had during your sleep. Take a look at your data for your sleep and if you want to, post it here and we can help you better.

I would suggest that you keep trying with the machine as you don't want to wake up dead or worse, something happen and you are in a state where you can no longer do for yourself.
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#12
RE: Too Young For Sleep Apnoea?
(07-17-2015, 10:01 AM)me50 Wrote: Maybe your pressure is too low or not the right pressure for you. If you are using software like SleepyHead, you should see what your pressure is and what problems you had during your sleep. Take a look at your data for your sleep and if you want to, post it here and we can help you better.

I would suggest that you keep trying with the machine as you don't want to wake up dead or worse, something happen and you are in a state where you can no longer do for yourself.

Great suggestion!
The DreamStar™ Analyze software is available on line if it didn't come with her machine.

The number one most important thing to know about this whole possess IMO is to be your own patient advocate and know your numbers!
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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#13
RE: Too Young For Sleep Apnoea?
I just wish I could have been diagnosed this early. xPAP therapy has changed my life for the better, and revolutionized who I am.

We all have things that make us imperfect. We all have our own set of scars. Things could always be a lot worse. Be thankful that you have a condition that can be cured 100% as long as you continue the therapy. That is a gift. And be thankful that you have a long life ahead of you in which the therapy will improve and become more comfortable and even less-invasive than it is today. The future is actually pretty bright for you.

But xPAP therapy is very personal, and since it happens only in your bedroom, you can be as private about it as you wish, up to a certain point, of course. But it might also be a gift in one other way, in that beautiful young girls with a wonderful name like Coleen also need a way to weed out improper suitors. If you have a "condition" that they might find problematic, they will eliminate themselves from competition automatically, leaving just the quality suitors behind, the good ones who are able to accept you.

You're going to be just fine.
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#14
RE: Too Young For Sleep Apnoea?
Thanks everyone for your replies and for your kind words!

It seems unanimous that I stick with CPAP therapy, so I'm going to grit my teeth through it and go for it. I wasn't previously aware of the significant effect sleep apnoea would have on my life expectancy, so if anyone could give me a source of information regarding that I would appreciate it. At the minute I have a very kind gentleman in my life who has no worries at all about the machine, and friends who stay over know better than to make comments. I suppose it's a combination of claustrophobia, discomfort and the very idea of being stuck with this forever. Combined with the fact that I'm a musician (think late gigs, camping festivals, travelling!) it's been difficult to accept. It was strangely comforting to have so many of you say you wish you were diagnosed earlier, I appear to be lucky in that sense. I was also originally tested for narcolepsy, which in my opinion is far more terrifying.

So a couple more questions from a newbie! (Hope it's ok that I ask them here.)

Are there many young people (maybe even Irish??) with apnoea on this forum?
Advice for travelling with a CPAP machine?
More information on my possible future with sleep apnoea?
Anything any of you wish you knew about apnoea and CPAP earlier, or anything you think I should know?

Thank you all so much for your kind and helpful replies, this sounds silly but I finally feel like I'm not alone in this! Very appreciative of this forum.

Colleen
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#15
RE: Too Young For Sleep Apnoea?
Colleen you are here among some of the nicest imaginary people I have ever met so ask anything and do not fret. I immodestly suggest you read my thread here http://www.apneaboard.com/forums/Thread-...-feel-dumb and see just how fortunate you are to have learned about us early Too-funny
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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#16
RE: Too Young For Sleep Apnoea?
Colleen, I did not discover my apnea until recently (I'm 57) but I had it as a child and as a young woman also. Even if I had known, there weren't treatments available - but even so, it would have been good to have a name for the issues I experienced. I had dreams of drowning, strangling, choking, being smothered, buried --- everything breathing impaired. I developed diabetes, high blood pressure, and more. These are all correlated with untreated sleep apnea.

There's a device in Germany and available in the UK I have been semi obsessed with since I heard of it called alaxo stent. It's kind of nasty, as you need to introduce it to your throat via the nasal passage every night, but it does appear to be the one alternative to cpap I've seen that has a good chance of working. You would need to check it out and see if you thought the benefits of it over cpap are worth overcoming squeamishness for. Certainly would travel easy.
هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه  هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum

Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه  هههههه
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#17
RE: Too Young For Sleep Apnoea?
(07-17-2015, 05:58 PM)colleenbrigid Wrote: Thanks everyone for your replies and for your kind words!
I wasn't previously aware of the significant effect sleep apnoea would have on my life expectancy, so if anyone could give me a source of information regarding that I would appreciate it.

We have a Wiki on the board that contains a lot of information and you might start with this link:

http://www.apneaboard.com/wiki/index.php...#Prognosis

Heart disease certainly shortens life for a lot of people and untreated sleep apnea increases your risk of a disabling or life ending heart attack by 30%.

Fortunately for you, CPAP therapy has been scientifically proven to hold off these complications. It isn't a cure but it is an effective treatement backed up by multitudes of scientific studies.

Just like a diabetic is dependant on insulin, you are dependent on CPAP therapy until or if something better is found. One thing I think you can count on is that the methods for applying CPAP therapy are going to get better and easier to handle as the years pass. In forty years you'll be laughing at the primitive stuff we were using in the 'teens.

But while what we have now will be seen as primitive in a few decades, we know with virtual certainty both that it works, and that it is the least invasive method presently available.

In forty years you'll also be thanking your lucky stars that you were diagnosed and got effective treatment so early.
Ed Seedhouse
VA7SDH

Part cow since February 2018.

Trust your mind less and your brain more.


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#18
RE: Too Young For Sleep Apnoea?
I, too, have Heart Disease and Diabetes Type 2. I am 62. No one can say for sure that my sleep apnea caused these problems, but the preponderance of evidence says they often co-exist.
What is your discomfort based on? A mask that doesn't feel right? The very idea of a machine? In my younger years I certainly would have worried how I could have attracted a partner. But these issues can all be worked. First things first. Get comfortable with your therapy. Find a mask that fits well and that you can tolerate for the night. That is half the battle!

After that, travelling with CPAP is no real problem - one small carry-on to add to the baggage. Doesn't matter what time you go to bed, just the quality of the sleep you get. When I was hospitalized over the 4th of July, I took my machine with me - it was blessed relief after not having it the first night.

Even at my age, I sort of dread having to sleep with a hose the rest of my life. But I want to keep breathing as long as I can Smile

Best of luck!
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#19
RE: Too Young For Sleep Apnoea?
Welcome, Colleen.

As for embarrassment, would you be embarrassed if you were diabetic and needed insulin? I understand the feeling, but it's not anything to be embarrassed about.

As for "too young," the only people who are too young are those still in the womb. As for "too thin", doctors are beginning to realize that thin people do get apnea. Older and fatter increase the odds, but it can happen to everyone. There's too much "ageism" and "slenderism" in the medical community and society, and we miss a lot of medical problems because of it. Consider yourself lucky they figured out your apnea.

As for the gum device (oral appliance), the odds of it working are much lower than CPAP. It doesn't work for many people, it can cause jaw problems, and if it works, it usually doesn't reduce apnea as much. There's also the problem that you don't know it's working. A good CPAP machine is a bit like a mini sleep test every night because it records data.

We haven't heard that much about the Sefam DreamStar machines. Which model do you have? There should be another name like intro, info, auto, etc. on the front of your machine below where it says DreamStar.
Get the free OSCAR CPAP software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#20
RE: Too Young For Sleep Apnoea?
(07-16-2015, 06:59 PM)colleenbrigid Wrote: Hi all, new member here, sorry if I post this incorrectly and for anything else!

I'm a 20 year old female and I was diagnosed with sleep apnoea a few months ago (my number is 9). I've been using a CPAP machine ever since and I just can't get used to it. My friends and family are supportive but I find it awkward and embarrassing. The discomfort I feel using it is still as intense as the first night and I rarely make it through a full night without yanking it off. I'm healthy otherwise and have a BMI of 21, so I've been told that I must just have a small throat. My symptoms are quite severe tiredness and constant nightmares. I've never met anyone else with sleep apnoea here in Ireland. I've heard of an expensive gumshield-like device that can be used as an alternative, but could anyone give me any further advice or recommendations for alternative products? The thought of using the machine for the rest of my life when I'm so young depresses me.

Many thanks,

Colleen

I know it seems a long haul to deal with a chronic issue the rest of your life. My mother didn't have sleep apnea, but she developed juvenile type diabetes when she was young. She had to get used to giving herself insulin injections several times a day, had to prick her finger to check her blood sugar (sometimes up to 8 times per day), and had to make permanent changes to her lifestyle. She said the way she got through it was by adopting the motto "One day at a time." She focused on what she needed to do today and tried not to continually focus on looking down the rest of the span of her life. She decided if she lived today the best she could, and took care of herself the best she could, then tomorrow (and all of the next days) would take care of themselves because she would be better positioned for them. She was right, she lived with her ailment until she was 67, and at the time of her death (which was unrelated to the diabetes) she was still very successfully treating it.
I'll be honest. I haven't found sleeping with CPAP nearly as peaceful and enjoyable as bedtime was for me previously. Then again, I'm at a relatively high pressure (currently 16.5--I was at 18 before I lost a lot of weight). But I also don't believe I could sleep without my machine now. Since my untreated AHI is 117, my doctor convinced me my life depended upon staying with it. I'd be scared to sleep without my machine. When you look at what the machine does for you, it really becomes a comfort after time.
Keep in mind the importance of CPAP to your health, focus on today and taking care of yourself the best you can right now. Then you'll be better positioned for tomorrow and all the days that follow.
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