Forum · Ed

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[-] Ed +0 points · over 2 years ago

Hi everyone. Guess I may wind up as one of the seniors on this site. I have had sleep apnea for 25 years.....was hardly known that long ago. My original CPAP was very big, tall, made a lot of noise and needed a new filter every week...paid $5.00/filter, no insurance reimbursement. It also was bulky and weighed a lot. Things sure have changed. Was diagnosed with Mixed Sleep Apnea 15 years ago and now have been using a Bi-Pap with a timed back-up. It is small, quiet and has been working fine for over 6 years. I am also a coordinator for an AWAKE group for over 12 years. My apnea is totally under control and am doing great. Also developed diabetes probably due to my sleep apnea. I have never been overweight and try to keep active, although I am retired.

Just wanted to sign in and say hello.

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[-] Will +0 points · over 2 years ago

Welcome. Thanks for being an AWAKE coordinator for so long. That's a lot of people you have helped@

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[-] SusanR +0 points · over 2 years ago

Hi Ed,

Great to hear from you. It would be good to learn of your ideas for how MyApnea.Org can reach out to members of your A.W.A.K.E. group- the larger the community, the greater our power.

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[-] Ed +0 points · over 2 years ago

Greetings to Will. Will, this is Ed from your sleep apnea group. Where you been? Haven't seen you in a long time. Thought maybe you died (LOL). Got a meeting coming up on Jan.27th.

Susan--hello. Your message will be given out at our next meeting. However, most of our members are seniors and not all have computers. I have to send out postcard reminders to many. But, I think there will be a nice response.

I especially like the research aspect...we need more of that to gain more knowledge about sleep apnea and other health problems that stem from or are caused by sleep apnea.

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[-] Puffer +0 points · over 2 years ago

Member 154370--You mention using a Bi-Pap. I am new to this apnea thing and have been told I have central and obstructive and was put on a regular cpap about 2 months ago. Have not been back to my sleep doctor to see what's next. Going tomorrow. Do you have central apnea or is there some other type of apnea to be a "mix" with? I am looking forward to this site for information and help in navigating yet another health problem. I find talking to people who are going through the same conditions are more helpful than talking to medical providers, at times.

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[-] Will +0 points · over 2 years ago

Hi Ed,

Got busy I guess. When is your next AWAKE meeting.

Will

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[-] Ed +0 points · over 2 years ago

Hi puffer: Mixed sleep apnea is not a common diagnosis, perhaps 10% of those with sleep apnea have these symptoms. People with sleep apnea hold their breath for maybe 10-20 seconds, people with central sleep apnea hold their breath for a much longer time. The concern is your oxygen level drops if you don't breath regularly and this can lead to heart problems. I have a bi-pap machine...when I breath in the pressure to open my airway is 12, and it is 6.8 to breath out. Since I stop breathing for a long time, I have an automatic trigger as part of my bi-pap which blows a breath into me, thus getting air into my system. This is a "timed backup". The average person breathes 12 times per minute, thus my "trigger" is 5 seconds. If the machine senses I don't take a breath within 5 seconds, it blows air into my mask. It is like a "ventilator" in the hospital, only it only blows air in to me. The machine is expensive...it cost $7500 but my insurance co-pay was 20%, still a lot. However, I;m still around and the machine does the trick. Hope this answered your question.

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[-] MakeSleepAPriority +0 points · over 2 years ago

Hi Puffer and 154370...You both have central apnea but the cause of it may be different. One of the challenges researchers have is figuring out how to match the cause with the central breathing patterns they see in a sleep study. There are at least 3 distinctly different PAP units that treat different types of "central" apnea breathing patterns. What works well for Puffer may not be the solution for 154370. Sometimes after a few weeks on CPAP to treat the obstructive apnea, the central goes away. This is why it will be important to compare all the users here on the site with central apnea, their histories, treatment and even breathing patterns some day maybe. You might be asked to take part in some surveys specific to central sleep apnea. You can also think about what is important to you for your outcomes and formulate a question for researchers to ask that would help you achieve that perfect outcome. It's kind of different from the research you are used to seeing but exciting don't you think?

How did you come out with your sleep doctor appointment Puffer?

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[-] Ed +0 points · over 2 years ago

In my case, they believe the problem could be tied to the C02 levels. The trigger for breathing is usually the amount of CO2 in your blood. When it gets to a certain level, your brain will have you take a breath. With me, they believe I require a higher concentration than normal in my blood before the trigger to breathe is activated. Since it takes longer to build up to a higher concentration, I hold my breath longer thus creating the central apnea episode. My "timed backup" kicks in after 5 seconds, and I exhale my CO2 and bring in fresh air and oxygen. Of course, we have all learned, everyone is different and what works for one may not work for another. I have been controlling my mixed/centrals for over 7 years and my apnea index readings average less than 3.0 episodes per hour which is very good control. My only problem is my machine is 7 years old but still working fine. I don't like the large co-pay I'm going to get hit with at some point so I'm trying to stretch out as long as possible.

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[-] MakeSleepAPriority +0 points · over 2 years ago

You have a great understanding of your apnea. Does that help you make the extra effort to adhere to therapy?

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[-] Ed +0 points · over 2 years ago

Yes, it helps to be educated and informed about what ails you. I always tell people the 2 common CHRONIC conditions affecting many people is sleep apnea and diabetes. Since there is no cure for these 2 problems, and you will live with them for the rest of your life, it is in your own best interests to learn all you can about them, how they affect your life and what you can do to control and maintain your maximum health. This is where support groups and forums such as this play an important part. No doctor or health professional has the time or inclination to sit with you and explain what you need to know. Adhering to the therapy, understanding why and then being consistent with your regimen is critical to your well-being. The key is in 3 words...."education then motivation."

thi

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[-] MakeSleepAPriority +0 points · over 2 years ago

Well said. Thank you!

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[-] Puffer +0 points · over 2 years ago

Thank you for your comments. I am getting a better grasp on this. At my recent sleep doc visit I was told that my central apnea has disappeared (YAY!) I am doing well on my regular run-of-the-mill C-Pap. I will continue to monitor this group for all the knowledge I can gather.

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[-] MakeSleepAPriority +0 points · over 2 years ago

Great news Puffer!!!! That means we have two examples of different kinds of central apnea right here on this site. Your's is an example of how fixing or at least improving one problem (your obstructive apnea) also improves another problem (the one causing your central apnea). You add in the fact that you and every cell in your body are now getting more sleep for the time you spend in bed and your hard work to adhere to your CPAP just gave your body a BIG healthy gift! Congratulations.

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