Forum · I'm New Here and Started ASV 10 Days Ago

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[-] SassysMom +1 point · 9 months ago

I'm so happy to have found this group of supporters! My story sounds like so many others in one form or another.

I was diagnosed with Fibromyalgia 20 years ago. Needless to say, there have been many medical conditions that have been added to my history that go along with Fibro. Insomnia, extreme exhaustion, needing to sleep at the drop of a hat for 3-4 hrs. during the day, then not sleeping at night or going to sleep about midnight and sleeping another 7-10 hrs. I was also diagnosed a few years ago with chronic sinusitis and none of the "usual" treatments worked for me (Flonase, nasal sprays, allergy meds, etc. My Neti pot helped the most but now my nasal passages are so inflamed even that is no longer an option.

It's been a long journey from Sleep Study referral to 3 sleep studies, finding out I have central sleep apnea, and starting on an ASV machine. I haven't had and communication with the Sleep Specialist other than the first 20 min. face to face evaluation. I've asked a question or two and they've been answered by a staff member and very short answers. When I met with the med equipment specialist, he told me I was on a super specialized machine that only 1 in 3 people get, that my pressures were very high...about 1 step away from being on a ventilator, and that this machine was often referred to as the Death Machine. All of this was news to me! Has anyone else gone through a scenario like this?

I've had the machine for 10 days, pushed through 4 days all 4+ hrs/night. I'd wind up ripping the mask off when that awful squealing leak sound kept me awake. Took 4 days off due to frustration, then a dental emergency that wasn't compatible with wearing the head gear. I changed to a smaller mask (full mask) for 2 days and it just isn't working. Went back to med. size mask and the squealing started again if I don't stay in one position. Help! I really want this to work!!! Anyone have suggestions for masks that actually let you fall asleep? I don't mind that soft sound of a small leak, but can't sleep through the squealing. I'm trying to take this one step at a time, but anyone using ASV that has tips/suggestions, I'd sure like to hear them.

Here's to success!

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[-] wiredgeorge +1 point · 9 months ago Sleep Commentator

Not quite sure what the differences are between a CPAP/BIPAP/APAP and ASV machine. Took a quick look at google and it seems that there is air pressure, a hose and a mask and the machine is similar. You did not mention what pressure your machine was running but I use a BIPAP and my pressure is MAX for my machine. A Bipap eases pressure on the exhale phase to allow easier breathing and my machine is set 25/20 (inhale exhale) which is HIGH. I had mask leak problems big time. Most folks using low pressures with mask leaks don't understand how leaks are greatly increased with high pressure. I went back to my equipment provider and complained about my initial mask which had basically just been tossed to me and told me that I would figure out how to make it quit leaking. I didn't so mask two, a Simplus (I think that is the name) was given to me and I began figuring out how to deal with the high pressure leaks. Wash face thoroughly before putting the mask on. Clean mask every day with mild hand soap. AND MOST IMPORTANT I began using mask pads. Still receive miserable scores for mask leaks when I get electronic feedback but the mask leaks are not noticeable, don't make noise and my AHI is very low. Made the therapy effective. There are lots of threads on mask leaks using full face masks... read through them and good luck.

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[-] SassysMom +1 point · 9 months ago

Thanks for the support, wiredgeorge! I think I'm just so frustrated that all the preliminaries have taken so long, and now being told I have to use the ASV everyday or risk dying or being on a ventilator. Don't think it was the most supportive talk when I had no idea what any of my studies had revealed. Basically, the ASV is described as CPAP on steroids :) it treats central apnea which means not only are my airways not responding correctly, but the part of the brain that responds to apneic episodes doesn't respond and the length of the events can be increased and/or longer. Very simplistic explanation to say the least. It wasn't until I picked up my machine that I was told it is one step down from a ventilator, but since my Sleep Specialist hasn't told me anything, I have no idea what was going on during my sleep studies or how high my pressures were increased from what wasn't working with the CPAP machine they tried on the 2nd sleep study. I do know that the CPAP presssure had been increased to 18 and it wasn't enough. Yes, I figured out the high pressures have a big impact on the mask leaking...sigh. The electronic feedback always says I have great seals on the mask. My AHI is dropping, though...a good thing!

It was suggested I use Irish Spring soap on my face, despite the fact it is so drying. It helps the mask seal because your face is DRY. I, too, am washing my mask everyday I use it, even though I was told 2-3 times a week was enough. Thanks for the info that there are other threads on mask leaks. Also, what are/where are the mask pads?

To pleasant dreams...

[+] [deleted] +0 points · 9 months ago
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[-] Sleep +0 points · 9 months ago

Hello SassysMom, I would recommend following up with your Sleep Specialist so that you can get some answers to your unanswered questions regarding your sleep studies and ASV. I agree with WiredGeorge on cleaning your mask every day, it's one step you can take to get rid of any oils on your mask which may be contributing to leaks. I agree with him also masks leaks can be a difficult thing and when you have a high pressure it can be especially challenging. Mask liners/pads may indeed be helpful for you. Google CPAP mask liners or moleskin. You may also want to try the different masks on while awake in bed and change positions. That way you can adjust the mask and figure out what works for you to improve the leak and reduce the squealing noise. You'll probably have more patience trying to learn how to fix the leaks while awake than listening to it squeal half awake during the night.

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[-] DanM +1 point · 9 months ago Sleep Commentator

Hi SassyMom,

Both wiredgeorge and Sleep have provided good feedback about the mask leak and squealing issues. Moleskin is a soft fabric that can be cut to fit. Some people make a few of these and just hand wash them as needed. If you continue to have mask leak and noise issues, please do consider contacting your home care provider. There are numerous masks available in many shapes, sizes and materials from many manufacturers. They should help you find the best mask for you needs. I wear a mask and have been on therapy for a number of years. Simply keeping your face and your mask clean should help with the leaks, and no specific brand of soap is required. Drying your skin too much can lead to irritation from the mask being placed on top of the dry skin. Cleanse your face at night using whatever cleanser works best for your skin, and make sure to completely rinse any cleanser and dry your skin. As for ASV, it is an adaptive treatment. CPAP offers a fixed, positive pressure that blows air into the airway. BiPAP offers 2 pressures, and those pressure change as you inhale and exhale. ASV is a treatment that adapts to your breathing with varying pressures, and it can treat both obstructive sleep apnea and central sleep apnea. Using ASV does not mean you are one step away from being on a ventilator, and I am sorry you were given that message. However, it is a treatment for patients with more complex breathing issues, and I encourage you to follow up with your sleep physician to learn as much as possible about your diagnosis. As you said, to pleasant dreams!

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[-] wiredgeorge +1 point · 9 months ago Sleep Commentator

I have an ASV mode on my Resmed BIPAP machine along with a CPAP mode. The CPAP mode only runs to 20 pressure so that is likely why my sleep doc prescribed the BIPAP. In any case, I want to tell the medical supply world that when they market a product, it is often useful to keep the name fairly simple so that their customers can repeat it. The mask pads I refer to are: RemZzzs Full Face CPAP/BiPAP Mask Liners for ResMed & Respironics (30-Day Supply). They are supposed to be used one per night but I usually use one pad for 2-4 days. The pad is essentially cut out of a tee shirt type material and has an egg shaped hole in the center that fits over the opening in your mask. Since they are kind of pricey, my wife washed the first batch and then I tried using them; problem is the hole gets out of shape and stretched so they are good for about one use. I now just buy new ones. Not sure about "moleskin". I am pretty sure you could take an old cotton tee shirt or similar and make them if you had the patience to site there with a pair of scissors and pattern.

As far as your experience with the sleep doc; this seems pretty common. I never saw a sleep doc. Got the study and then when I called, they told me they had shipped the results to my primary care physician and talk with her. She is a great doc but not a sleep apnea/sleep study expert and after talking with her, found she offered little insight as to what happened during the study. I call the sleep study place and well, demanded they send me a copy and I did some investigating. First, I wasn't getting any deep sleep. I already guessed that but what surprised me was that sleep apnea events where you stopped breathing were so frequent and long. My blood oxygen level was dropping down into the low 70s for extended periods. I looked this up and found it caused all sorts of evil things happening to your brain, heart and other organs. I determined at that point to self educate and not rely on the people I was paying because I just wasn't getting the info I needed to stay healthy. First thing I did was get a Blood Oxymeter which fits like a watch and records blood oxygen levels while I am asleep. It is unobtrusive and pretty accurate and it helped me gain a lot of confidence that therapy was prescribed correctly and was working.

I next visited several CPAP sites and this one we are on now is the ONLY one where folks didn't blow smoke and get you filled with potentially dangerous clap-trap. The advice you get here, (NOT FROM ME AS I AM JUST A PATIENT-TYPE) but from some folks educated in this stuff is spot on and conservative in approach. I still learn a bit but try and stay on so give some support to what the professionals have to say and add some first hand insight on exactly what you are going through. Good luck in your therapy!

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[-] DanM +0 points · 9 months ago Sleep Commentator

Hi wiredgeorge! Thanks for sticking around. I really appreciate your insight and reading about your experiences. Also love that you are willing to share both your failures and your successes with treatment. Thanks!

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