SassysMom

Member since:

Aug 28, 2016

Number of posts:

3

Reply to Extremely tired
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[-] SassysMom +0 points · about 1 year ago

Hi BuckeyeMike... I've only had my ASV machine 10 days, but I did find I needed to adjust the humidifier pressure and temp several times in the first 4 or 5 days. I think mine is on a pressure of 6 and temp is 75 degrees and it feels pretty comfortable. You might want to try pre-heating the water in the tubing, if you're machine has that feature, and having it a little warmer than cooler. It has helped with my dry mouth. I'm using the full face mask, also. Best of luck!

Pleasant dreams...

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[-] BuckeyeMike +0 points · about 1 year ago

Thanks for your suggestion, SassysMom. My machine does have the pre-heat feature. I'll try warm vs. cooler air!

Reply to I'm New Here and Started ASV 10 Days Ago
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[-] SassysMom +1 point · about 1 year 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...

Reply to I'm New Here and Started ASV 10 Days Ago
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[-] SassysMom +1 point · about 1 year 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!