Introduce Yourself

What brings you to our community? I’m here to see about alternatives to a Trilogy100, I can’t afford it even with medicare covering 80% I’ve had 2 sleep studies so far, and I averaged 208 occurrences an hr :grimacing:

**Tell us about your current sleep routine?**I get about 5 hrs sleep on average, 2am till 7am.
Finish this sentence: “Sleep is3 R’s. Rest, Reset, and Relief!

I love those 3Rs!!

Otto is asking for any experiences regarding device alternatives.

Hi my name is Thomas, I have practiced as an RRT as a night shift charge/supervisor in the ED, ICU and nursery for 6 years and I recently moved to the sleep lab at the beginning of the year for a few reasons. The first reason was my health I have many leg issues but enough of that. The second reason was because I needed a new challenge and I have OSA and have been wearing a cpap for roughly 7 years. I though the combination on acute care, chronic lung disease management and personal experience with OSA, would help others coming into have a sleep study. I learned about this community from my department director. My sleep routine is horrible as I work night shifts and my body keeps going into that shift workers disorder where I sleep for 2 hour up for 2 sleep for and back and forth. Sleep is the single most important way to lead a happy, healthy, fulfilled life. Without good sleep one is negatively impacting every single aspect of their lives, from poor energy to heart problems to depression and a increase in any pain that everyone deals with from day to day. Sleep is the foundation on which we build our daily lives and our health.

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Wise advice, @Tom11980 ! Thanks for sharing, and WELCOME to the sleepapnea.org Forum!

What brings you to our community?

Research into being able to live a more normal life with sleep apnea in regards to recreational activity. (Camping).

Tell us about your current sleep routine?

Wash my mask, hose and tank in the afternoon when I get home from work, let them dry. At bedtime fill the tank with clean purified water, and hook up the mask / hose, put it on, and power on the CPAP, from there hope and pray for sleep while my mind won’t shut up.

Sleep is (Fill in the blank).
Frustratingly elusive to come, and infuriatingly short when the alarm is set to go off. Completely refreshing once I am allowed to rise naturally…

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Hello my name is tony and I have recently started using a cpap. I have a friend she keeps her cpap clean but still has trouble sigh her sinuses.as far as I know no mold in the machine but we have worked through all normal causes if anyone can tell me what to suggest to her on second life next time I see her on again I would appreciate it because I want her to feel great and not wake up exhausted like I was before I got my machine.

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Hello my name is Alan Parker and I am a registered respiratory therapist and soon will also be a registered polysomnographic technologist. I have worked for several years in sleep medicine and enjoy helping patients with issues and troubleshooting to solve these issues.

I have moderate obstructive sleep apnea while sleeping on my back and I currently use positional therapy to treat it, but will navigate to CPAP to treat it as my shoulders and back are feeling the effects of sleeping on my side and stomach.

Sleep is essential and is one of the single most important things we do beyond eating and breathing. It is crucial that receive enough sleep nightly to be able to have quality of life including, but not limited to having energy, thriving, being mentally capable, controlling emotions, etc… It is unbelievable how much sleep dysfunction occurs. Hopefully as a community we can help to educate one another to treat and eliminate sleep issues and help our society to be better as a whole.

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Hi, I’m Dave with a hint of sarcasm.

I’m interested in gaining knowledge in my rather unique Overlap Syndrome. I’ve been on ASV successful for over 2 years, but COPD seems to be on the increase a bit.

I’m a member on another Apnea forum, I learn how to and why I need to have changed my settings, and I’ve done it successfully. Until recently that is. I want to learn about this Overlap Syndrome, which device to beat it into submission with, optimize my own settings, and enjoy sleeping with a low number of apnea events again.

Sleep is wonderful when your alien octopus delivers the best apnea therapy it is capable of delivering.

That is correct on IPAP and EPAP, as EPAP is lower of the 2. This allows you to exhale under less pressure more easily.

Thanks Dave. I am currently trying to make my decision to stay on BiPap or give it up. My doctor seems to be absolutely clueless and my supplier…well, I am pretty sure that I could stop somebody on the street and get a more educated answer than I get from them.

I am so tired every day. I have a lot more issues and just found out I have even more. So, I have an appointment with my primary care doctor Wednesday. I have a copy of my sleep study, he has all my brain aneurysm and stroke information and I now have an updated pulmonary function test and my low dose CT scan results. I am just going to throw it all in a pile with my ever increasing AHI chart and let him explain to me why I should continue. I snore but not loud enough to bother anybody and I don’t even snore every night. My sleep doctor doesn’t even care that I am still snoring.

I am just so exhausted every day and my sleep doctor has no answer other than give me a stimulant for daytime sleepiness. I am thinking if I wasn’t up half the night fighting my mask and trying to sleep I might not be as tired when I get up. I wasn’t this tired before sleep apnea.

I’ve kinda been there too, just swap your other medicals for mine. I was actually better off without BPAP than on it, but that’s because of my high tendency to have central apnea.

I can’t make you do anything, but I’d keep at that xPAP therapy. If you want the free advice, I’d suggest you read the sleep data and making your own setting edits with data knowledge to help make it work better. I’d even go as far as telling you How and Why on that.

I really don’t like seeing anybody on any xPAP fail. Yes I know the reality is there’s a select few that were diagnosed with apnea and no xPAP of any variety can help. It’s very rare and your undiagnosed AHI would have been very low anyway.

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Diagnosed with severe sleep apnea in 2017, after learning I have an early developing ascending aortic aneurysm. Using a dream station with humidifier, and nasal pillows (skin on nose could not handle mask). Just retired and considering travel. Looking for advice on travel CPAP units.

Sleep is heaven! I didn’t sleep for about 50 years… So after 2 years of CPAP, I finally feel rested and have energy. I can trace a very interesting path throughout my life… All connected in some way to my sleep apnea.

I have been an RN for 39 years, 16 of those years working nights. I saw patients struggling with their CPAPs, as well as others who were committed to using them. And I saw still others with either diagnosed or undiagnosed apnea, who refused to even discuss it.

I have now educated my own physician to not write it off when that young 30-something mother complains of being tired all the time. Don’t assume it’s because she has young children or is depressed. Get a sleep study!

Everything about me does NOT fit the expected pattern for sleep apnea. I’m female, active, normal weight and petite.

And after nearly 20 years of taking Ambien, Xanax and Adderall to half function… I’ve been off ALL of these for over a year. And never felt better.

I’m thankful I at least understood that while I got poor sleep for decades, I protected that sleep viciously. I’m sure that’s the biggest reason I’ve escaped high blood pressure, diabetes, and other scary things.

Starting CPAP therapy is not a walk in the park. It takes hard work and commitment. Trial and error. I probably tried at least 50 masks before I built a collection of 2 or 3 that would work well for me. The online suppliers who offer a 30-day return are the best.

Don’t give up. Your life depends on it.

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What brings you to our community?

To share my story so others may learn from my experience, and to read the stories of others so that I might also learn from their experiences.

Tell us about your current sleep
routine?

I was first diagnosed with moderate-severe obstructive sleep apnea back in 1997 at 25 years of age, 5’9", and 168lbs. However, I could not be compliant with CPAP and moved on to other types of treatment: dental appliance, 2 surgeries, and almost everything in between… to include nasal sprays, decongestants, supplements, nasal devices.

Around 2010 I started to gain weight even though I was still going to the gym quite regularly (3 or more times a week). I tried tweaking my diet, but I wasn’t seeing the results most people talk about when cutting back on sugar and refined carbs. In 2012 I became Type 2 Diabetic and was past 200lbs. By 2015 I was between 230-245lbs and started to hear about how poor sleep can get in the way of one’s ability to lose weight. This seemed to coincide with my own experience. So I decided to give CPAP another try. But after 3 mask types, I was still taking the mask of in my sleep and gave up. Since I had already paid for the machine, I kept it and just didn’t use it. My primary care physician got me a Rx for Armodafinil (Nuvigil) to help me stay alert during the day… but it was not a perfect solution.

By 2018, I was starting to slide out of bed and waking up on my hardwood floor. I would do this 2-5 times during the night until I would give up around 4:30 AM - 6:00 AM. Many times I would sit up on the edge of my bed, only to fall asleep and crash into my nightstand.

Then I started to sleepwalk… which led to falling down. Often I would catch myself, but sometimes I hit the floor. Twice I fell straight down and landed on my tailbone. Then finally one night I fell backwards in my bathroom and came within inches of hitting the back of my head. Had that happened, it might’ve been a few days before someone found me because I live by myself.

I went back to my doctor and said something had to change. I was also fighting drowsiness while driving, and I had my first accident in years (2017, age 45) when vacationing in Hawaii for the first time while driving a rental car. I was very lucky that I was not injured and that I was the only one on the road, so nobody else was involved.

We decided to try another sleep medicine doctor and at first I was going to try to qualify for InspireSleep. However, I needed to do a baseline sleep study and another one with a CPAP machine to prove I could still not be compliant. No problem; I was happy to do whatever it took because I really thought I was going to die.

My first sleep study told me that it was my sleep apnea causing the night time activities and not the Armodafinil. My AHI was over 100 and my oxygen saturation was down to 57%. The next week I went back for the CPAP sleep study and slept through the night for the first time in years! That was weird and very unexpected. So I was told to take home the mask and hose and try the CPAP again to see how it goes for a week. I waited for the weekend, very disappointed that I’m having to face this damn machine again. That weekend, the first thing I noticed was that the hose was very different from the hose I was giving back in 2015. Come to find out, the hose I have now is a ClimateLineAir which I was told later will help the machine better regulate the temperature and the humidity of the air flowing through the hose.

I believe this hose saved my life. Why I was not given this hose back in 2015 after trying THREE different mask types, I have no idea… because this hose existed back then. I would LOVE to file a lawsuit against the DEM supply company, which is now known as AdaptHealth (formerly Roberts Home Medical). But it would be hard to prove damages…

Since April 2019, I lost 15lbs by June, without yet having gone to the gym or further tweaking my diet. By December I lost an additional 10lbs. I’m now consistently weighing between 217-223lbs and plan on going back to the gym again soon. I’ve also seen my A1C drop from above 7 (and taking 3 different meds) to 5.7 as of mid-December. That number is significant because BELOW 5.7 is NON-DIABETIC!!! My doctor told me I could stop taking 1 of my 3 meds for diabetes. Also, my uric acid is back to normal. My triglycerides are now back in the normal range. My liver and kidney enzymes are back to normal. My vitamin D is no longer low and back to normal.

However, I still have low testosterone. And over the past year I started getting performance hits at work. I am an IT Project Manager (2006-present) with a large programming background (1993-2006) and was successful until 2018. Currently I’m experience some sort of cognitive deficits, short-term memory loss, and/or executive functioning disorder. I’ve used up all my “vacation time” on doctors visits between my PCP, sleep medicine visits, behavioral therapist, sleep neurologist, and neuropsychiatrist. I’ve been diagnosed with anxiety and depression. And currently I’m trying to get approved for Short Term Disability.

Which now brings me to the final statement…

Finish this sentence: “Sleep is

ESSENTIAL to live your best life! Without it, your body will not be able to repair itself, especially if it’s not getting enough oxygen to fuel all the various cells that allow them to perform their specific functions! Also, our brains require sleep to rid itself of waste as our lymphatic system does not include the brain. Without sleep, the brain literally is not able to clear out the waste bi-products left from the activity during the day.

And now I’m not sure how much of my cognition has been impacted by my sleep disorder vs my toxic manager at work who is unhappy with my performance vs I’m approaching 50. I used to think the weight gain was a result of just getting older. But if that were the case, how else have I been able to lose 25 pounds without stepping foot in a gym over the last 4 years and not changing my diet?

Here’s something else to think about… How many of us have had premolar extractions when we were children and/or orthodontia work done as tweens/teens? I did… In my case, I started out with a Frankle dental appliance in elementary school… and then braces in middle and high school. In one of the sleep apnea Facebook groups I belong to, I met a woman who has a theory that a lot of issues such as TMD, TMJ, tinnitus, sleep apnea, neck pain, are all related to dental work that was performed on an entire generation of kids… some perhaps unnecessary as many were made to wear braces for purely cosmetic reasons. There’s growing research that seems to indicate there is a direct link.

Remember, I was only 25, 5’9", and 168lbs when I was first diagnosed in 1997 with moderate-severe OSA. I was born in 1997.

Hello! My name is Pam and I am so thrilled to be getting a CPAP machine. I was diagnosed with Stage IV cancer (IBC) 5 years ago now. I assumed my trouble breathing and lack of energy during the day were a side effect of my cancer and treatment. Turns out I actually stop breathing approximately 60 times an hour. I can’t wait to experience sleeping without the effects of apnea.
I do have questions about ordering my CPAP machine and thought maybe someone here knows the answers, as I wait for a return phone call.

  1. Does the full face mask come complete with the head gear?
  2. Is the tubing heated tubing?
  3. Very Important - Where can I get a humidifier?
  4. This is an auto CPAP, correct?
    Thank you all ahead of time!
    be well…be happy…be loved ~Pam
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Hi Pam,

Welcome to the forum!

By chance do you also have a Facebook account?

I have a page there I think can answer all your specific questions!

Thank you for sharing your story!

T

yes, I do. However, I was able to talk to someone from the sleep apnea center and they answered all of my questions. But, I’m hearing that it takes some getting used to at first so I may well have more questions! Would love to access the Facebook site.

Has there been a mild vinegar wash to the inside of the hose and the humidifier?

@Pam Great! Here is the link to the support group! There are already responses about your question-- (I posted the question on your behalf yesterday).

Come join us! Everyone welcome!!

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I have recently received my new resmed machine after using the old one for the past 5 years.
My name is David Bailey im 57 years old.
I had a heart attack in my early 30s after being diagnosed with hypertention.
Never slept well until receiving first machine.
sleep is precious.
I had 4.5 events per hour last night which I don’t know what that means lol.
Many speak on discussion of AHI, due to ignorance I don’t know what this is.
Could you please advise.
Many thanks David