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[-] LenNY +0 points · almost 3 years ago

Hi - I'm Len in NY. I was diagnosed with Sleep Apnea in 2006. The primary sympton I have of sleep apnea is that when I sleep on my back (and sometimes when I sleep on my stomach) I wake up gasping for air.

I'm about 60 lbs overwieght. I'm pretty sure my sleep apnea problems started when I got to that point. So I've tried to cut down (unsuccessfully, as it is 9 years later and I still have that problem).

I tried using a CPAP machine, but could not get comfortable with it. Last year I started wearing an oral appliance. It lasted about 8 months and then broke - so I'm now on my 2nd oral appliance.

Recently I've been experiencing symptoms of what I think may be TMJ (my GP suggested this and I did a little internet research which suggests this is liekly the case). I just made an appointment to meet with the oral surgeon that made my oral appliance to discuss this.

Those are my sleep apnea highlights. Any suggestions on things to do to improve my life with respect to Sleep Apbea would be appreciated!

Len

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[-] MikeJ +0 points · almost 3 years ago

LenNY, I think your idea of losing weight if possible is a great one. I lost almost 50 lbs, and I found that the pressure from my CPAP became uncomfortable. The pressure setting was able to be reduced a lot, which suggests that losing the weight helped me breath better. I also had experienced the gasping, usually preceded by a dream about swimming underwater and not being able to get to the surface. Don't have those any more, even with a cat sleeping on my stomach.

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[-] Momofsleepy7yearold +0 points · almost 3 years ago

Hi, my name is Angela and both my husband and 7 year old child have been diagnosed with sleep apnea. My son, Gavin, has been using a CPAP for one year and has done an awesome job adjusting to his mask. Learning of Gavin's diagnosis was a tremendous relief for us because he was having a great deal of mood and behavioral issues. These have been resolved to some success but other concerns have popped up! We carry some guilt in not having him diagnosed earlier, but it never occurred to us that sleep apnea impacted children. We certainly know differently now! We have worked hard to get the word out to get other families. I would love to connect with other parents who have children with sleep apnea. Much of our life is centered around managing his apneas, changing masks, problem solving pressure issues, securing compliance around the use of his CPAP (easier said then done at times!) and always wondering and worrying if the resulting behavioral and mood disturbances are connected to sleep apnea or something else. Exhausting at times! 😊. Aside from my whining--I am so proud of my son. He has shown so much courage through this process! He has become a bit of a spokesman on this topic!

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[-] TedB +0 points · almost 3 years ago

Glad to see you all here. Thanks for joining. Let us know what features, tools and resources you would like to see.

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[-] Jonna +0 points · almost 3 years ago

To Angela.....I am sooo glad to see a parent on here active in her child's diagnosis early on!!! And getting your kids the treatment needed at an early age is so important......I have a feeling that there are so many thousands of undiagnosed children out there, because, think about it, OSA is relatively a "new" disease!! The medical community has only fairly recently been researching and treating it!!! I don't believe that alot of doctors realize that OSA even begins at birth, at least the majority of them anyway. I am POSITIVE I was born with it.....it runs in my family on my dad's side. I only found out that I had it about 8 years ago!!! I am 61!! My boyfriend was trying to get me to start breathing again while I was sleeping one night.......and so it began......my sleep studies showed I stopped breathing over 200 times per hour, which meant severe OSA. A bunch of relatives on my dad's side have had it. We all look similar.....it may be 'structural' in nature, I'm thinking. That sounds like an odd way to put it, but that's what I'm thinking. My dad had it, but he was severely claustrophobic, so he wouldn't wear his CPAP mask at all. Too bad. I have worn mine religiously since being diagnosed, and have been through several sleep studies, and have ended up on a BiPap with a setting of 18/13, and I am still not getting good sleep at all. They tell me that my apneas have stopped at this setting, but I still have poor quality sleep and also suffer from serious imsomnia streaks. I am convinced that my OSA is congenital, i.e., I was born with it, as it explains alot of things throughout my life, such as falling asleep in school all my life, falling asleep on the job all my life, learning disabilities, high blood pressure diagnosis, diabetes diagnosis, etc, etc......all these things can be attributed to undiagnosed OSA. Which is why it is soooo important for parents to have their children diagnosed early if they are showing symptoms like tiredness, snoring, learning disabilities, etc. Angela, I am so proud of you for being such a good parent!! <3

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[-] Momofsleepy7yearold +0 points · almost 3 years ago

Thanks Jonna! It's been interesting for my husband. He was initially diagnosed at forty-something , but as he has gone through the diagnostic process with our son he has began to remember his trouble breathing as a child himself. Of course it wasn't even considered in his childhood. Glad we are making progress, but I feel we have a ways to go. :-)

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[-] Andy +0 points · almost 3 years ago

A great resource for this site might be collecting supply company names and having patients rate their performance. I have moved quite a bit and have found the knowledge and resources available to patients can vary greatly. Also, having the makers of products advertise the latest options available on this site. I think this would help increase patient compliance with the use of a Cpap machine. As a nurse and a family member of several Cpap users I am shocked by how little patients know about the equipment that is available. The problem boils down to patients having to deal with companies that aren't good or very helpful.

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[-] MakeSleepAPriority +0 points · almost 3 years ago

Welcome Andy, Your ideas could be very useful. Other sites discuss the ideas the way you mentioned. This site is unique in that it looks at outcomes and what is different about the various outcomes associated with diagnosing and treating sleep apnea. With your experiences a good research question might be something like "Does patient knowledge about their disorder and treatment affect compliance with therapy?" Another one might be "How does the quality of service affect outcomes in diagnosing and treating sleep apnea?". It would also be interesting to have users post what was most important and influencial to them during all phases of their journey getting to a doctor, getting diagnosed and succeeding with therapy for their sleep apnea. Are different things important to parents of children suspected of having apnea?

When we learn these things, patients will have the tools to get diagnosed and succeed with therapy sooner and with high satisfaction. What questions would you like answered? What aspect had the most positive influence on your family,s diagnosis and treatment.? Researchers can followup with targeted studies to further define what the most important influences are. It's a different way of thinking and doing research. What do you think?

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[-] SleepyKitty +0 points · almost 3 years ago

LenNY -

Please report back what the oral surgeon tells you. I am just beginning the journey of treatment for suspected sleep apnea (haven't had my follow up with the doc yet) and have been researching all the options. When I read about the oral device, my first thought was "my tmj would not like that at all!" I have tmj issues due to injury during childhood so I'm thinking the oral device will not be an option for me.

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