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+--- Thread: Should I continue treatment? (/Thread-Should-I-continue-treatment)
RE: Should I continue treatment? - Gideon - 03-24-2017
On the mask shaking.
I have had something that could be called mask shaking. Actually twice/
For me it was easily diagnosed as either improper assembly of my trusty Mirage Activa and air was blowing out the "seams" where air had no business blowing, between the soft and hard parts of the mask.
The other time the seal had rolled and I had to reset it so it was turned in instead of out.
RE: Should I continue treatment? - richac - 03-25-2017
(03-24-2017, 10:20 PM)bonjour Wrote: On the mask shaking.Well I had brand new mask in package didn't help
I have had something that could be called mask shaking. Actually twice/
For me it was easily diagnosed as either improper assembly of my trusty Mirage Activa and air was blowing out the "seams" where air had no business blowing, between the soft and hard parts of the mask.
The other time the seal had rolled and I had to reset it so it was turned in instead of out.
I can hear the pulsating from the machine itself. I believe it's the fot as sleeprider explained.
But I realize now it's not from weak exhale, it happens simply if I don't inhale within a certain time, no matter what settings or how hard i exhale. I can't believe this...
Does dreamstation pro do fot pulses? Maybe reamed is not for me?
Maybe algorithm is off on this machine or pulse not working properly?
I think I've hit the end of the road. Am I supposed to call these offices that Despise me again ? And ask for a 3rd machine? And I guarantee you the sleep lab I have appointment with won't even know what fot is....
I actually did manage to fall asleep for an hour or two before taking mask off. had 12 events per hour.
RE: Should I continue treatment? - richac - 03-25-2017
(03-24-2017, 10:20 PM)bonjour Wrote: On the mask shaking.Well I had brand new mask in package didn't help
I have had something that could be called mask shaking. Actually twice/
For me it was easily diagnosed as either improper assembly of my trusty Mirage Activa and air was blowing out the "seams" where air had no business blowing, between the soft and hard parts of the mask.
The other time the seal had rolled and I had to reset it so it was turned in instead of out.
I can hear the pulsating from the machine itself. I believe it's the fot as sleeprider explained.
But I realize now it's not from weak exhale, it happens simply if I don't inhale within a certain time, no matter what settings or how hard i exhale. I can't believe this...
Does dreamstation pro do fot pulses? Maybe reamed is not for me?
Maybe algorithm is off on this machine or pulse not working properly?
I think I've hit the end of the road. Am I supposed to call these offices that Despise me again ? And ask for a 3rd machine? And I guarantee you the sleep lab I have appointment with won't even know what fot is.... I'm going to cancel the appointment.
I actually did manage to fall asleep for an hour or two before taking mask off. had 12 events per hour. I probably need a proper machine for my health but I live in America, land of the hater, so I have to just dig myself a hole in the backyard instead.
RE: Should I continue treatment? - richac - 03-25-2017
well it seems dreamstation might do something slightly similar when reading this forum. They explain it as tickling air though not a shaking of the whole mask...
I can't remember what auto pap they gave me for the 3 day trial. Not sure if it did this. I just remember barely using it and my doctor calling me and telling me how well it worked out for me. And I was like it did? haha.
It seems that respironics and resmed do diff types of pulses. THere are more complaints about the resmed fot then respironics it seems for people bothered by it.
I happen to like the respironics cflex way better then the epr on resmed also. So maybe resmed is just not for me? I should of asked for a dreamstation pro, how was I to know!!?! The supply company is not even going to believe me at this point.
RE: Should I continue treatment? - Hydrangea - 03-25-2017
I've only ever used a DreamStation, and DreamWear and Amara View masks.
I've not experienced the shaking.
The Flex was mentioned, so I figured I'd speak up with my Flex experience.
I'm an asthmatic, although mine is well under control through diet and lifestyle. But a Flex setting on my DreamStation was making me *feel* like I was wheezing... but I wasn't wheezing, it was just how the pressure was being presented upon exhale. I don't think a non-asthmatic would be as sensitive to it as an asthmatic.
So I recently changed my Flex setting, and I've not had any weirdness of pressure. I'm glad for this! I haven't noticed anything... it has felt very natural to my breathing.
Thus I wonder if a DreamStation would be a better choice for you, simply due to its various exhale options.
I have to admit I have *no idea* how the Flex settings vary, and what they even do. But they are different from the EPR that ResMed does.
RE: Should I continue treatment? - richac - 03-25-2017
well the airsense 10 has EPR which is same thing as cflex, also 3 levels. I do think cflex was much stronger and noticeable.
The problem i'm experiencing is with the FOT as sleeprider mentioned. In otherwords you can reproduce the feeling your machine would make if you hold your breath. Thats what happens to me when I exhale has nothing to do with mask imo, its the machine pulsating air out, you can even hear the machine pulsating at the time its doing this if you listen to it.
I wondered if something wrong with the machine cause on another website they described it as a tickling feeling of air on your face. Not the whole mask shaking, but maybe thats normal I wouldn't know.
Anybody with an airsense 10 elite wanna hold their breath and see if the pulsating dips to nothing and shakes your mask? Really don't think it has anything to do with the mask although I would still like to see what something bigger would feel like.
Maybe they gave me the dreamstation from the jump cause they get complaints about the resmed who knows. I never used a dreamstation pro which probably does the same thing but a different type of pulsating wave then the dreamstation does, w/e that means...lol Its to determine if a central apnea event happened vs a regular event as far as I know.
But I was wrong about ramp, EPR indeed does not affect it at all, but while the machine is ramping it never pulsates, only after it gets to full pressure it starts doing the forced oscillation. I immediately notice it.
I think ramp must cancel it out for the time being until it finishes. So I guess I can try to fall asleep with ramp on and play around with those settings, and cross my fingers the shaking of the mask doesn't wake me up once it gets to full pressure. Assumin the machine is working correctly, its not harmful I guess even if it isn't, just annoying, which might defeat the purpose. I don't know how its not gonna wake me up.
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EDIT: I got the SD Card. Didn't realize there is a actually a resmed brand lol. Popped it in it said preparing card and went to home screen. guess thats all there is to it?
EDIT2: Maybe i can just put it on ramp for as long as possible with a start pressure close to my normal pressure? Is that possible? this is so sad. ( would be funny if it doesn't record data while ramping either )
RE: Should I continue treatment? - richac - 04-03-2017
don't mind me this is just my personal diary for the record before I die lol. ty apneaboard.com don't know what I'd be clueless without yall.
So Just about had it with the dme, my doctors office, and the northwell sleep lab. nobody I know from this area likes that place.
Trying out a new bed, purifying the air in my room lmao, trying to do w/e I can to get to sleep before I have a fkn stroke.
The resmed airsense 10 elite no longer wants to show anything but ahi 0.0 no matter what. The DME swears the machine is brand new lol. I said this one has an old looking sticker with your logo on it. He says they all do. I say the first one you gave me guy opened out of box in front of me and had no sticker lol.
So he wants me to call resmed technical support, I already informed my insurance company on them. (if they reading this now they informed the whole northwell health group) Im telling my insurance company about how they sold me a cheaper less capable machine then invoiced originally. and their invoices have a different name then my doctors office and they call themselves on the phone lol. Sometimes they forget what to call themselves. The just stop what they are saying on the name and say home care. The one dude delivering to me on the phone. One invoice with the same womans name as the others, has a diff address and no companies name above it. no name at all just an address!
On a diff subject, Everyone from my area. everyone I know who got diagnosed at our local sleep lab never stayed with treatment. I myself never went back after that first night, not just cause I couldn't sleep but because I couldn't take the place seriously. One dude kept running in my room with a hoody on like he was trying to scare me. He put the temperature of the room on sub below 0. Then he kept asking my why my arms were so skinny and started following me all the way outside. I didn't take offense to anything but it sure was weird. Now I know why none of the people I knew stayed with treatment though. Not only do you get no help, they are obstacles.
Which has nothign to do with the dme but I guess they all alike in the sleep industry. My doctors office don't pick up the phone or call me back, the sleep labe never picks up, they said they would call this week I don't bother even calling anymore., the dme never picks up. Actually every department in the dme picks up, except the cpap one... GO FIGURE!!!....even if I block my number.... I have to call someone else from there, I don't even know who this guy is I'm talking to. probably the sales guy for my doctors office, hes not the director, but he definitely makes things happen. so most likely.
But fine i say, I really would like this to work out if possible. I'll call resemed tech support. I called dreamstations on the first machine which is how I found out it didn't give data lol. But the first week I had the resmed elite, I saw that on a pressure of 8.0 when i actually fell asleep for like 2 or 3 hours amazingly. I had an 11.2 ahi. awake it was like 1-3 ahi probably cause I yawn alot and my breathing is screwed up. So I put it back up to 9.0 and tryign to fall asleep through the fot shakes, which drive me nuts, to see what a new reading would be at the higher level. but can't knowing the machine is only going to say 0 ahi no matter what lmao...
Maybe I should ask the supplier for a dreamstation pro instead, this is crazy.
wasted 40 of my medicaid phone minutes on hold with resmed support , before I hit the button for call back number.
I'm not holding my breath I will even get a call back. get the pun?
To top it off I threw the hose in the garbage, and now I have to figure out how to clean it? anybody know a good way to clean the hose? haha
RE: Should I continue treatment? - richac - 04-16-2017
So I went to the sleep lab the 13th of this week and explained my issues with the machine to the doc. She said they have no way to test if the machine is working properly. So immediately I was wondering wtf I was doing there. I guess so my pulmonary doctor could confirm she prescribed the right pressure for her malpractice insurance. So they hooked me up to their big fancy resmed vpap machine that of course worked fine. I felt like I wasn't suffocating, the mask did not shake on my face at all and I had no problems exhaling over the pressure. They also switched me to a amaraview mask which I do indeed like better especially when laying on side. Still not sure if its big enough she gave me a small and swears my nostrils weren't covered. When my family gets home I'm gonna have them look.
But I was explaining to the doc about how the first machine I got I switched after two months cause I wanted one I can check my ahi level. She said I shouldn't be worried about things like that...
Then When I told her I had to keep replugging the replacement resmed machine I got so it wouldn't always show 0.0 ahi she looked at me like I was nuts. I told her some people online said they do that once a week just in case it glitches and she squinted as if "thats weird". Then when I told her about the fot pulses shaking the mask on my face making it hard to fall alseep, she didn't have a clue what hell what I was talking about. I explained to her about the forced oscillation technique it does to determine if an apnea vent is central or not by sending pulses of air, and how you can even hear the machine itself doing these pulses, and She told me there is no such thing as central apneas!! I swear to God.
I told her how at frist my problems were chipmunk cheeks I have to work at not dropping my tongue. She told me there is no such thing. That is not something I can train my mouth to do.... I think this is the same girl when I returned the 3 day overnight machine that told me that sounded "weird" when I described the puffy cheeks. And this is a doctor I assume , cause she had a white coat not green scrubs.
At one point I said even if I don't pay attention to the ahi the shaking bothers me, She said it was probably the mask. She asked does it happen if I'm asleep. I said I don't know what happens when I'm asleep i'm asleep!! But I told her its keeping me from falling asleep!! in 3 months I've only managed to sleep a couple nights with the machine. I told her that I didn't think its the mask cause its something the machine is doing. I don't understand how this is the doctor and she has never heard about any of these things. Even when I'm not using the machine I'm getting the sensation of the mask shaking on my face. I wonder if its messing up my breathing. I told her that I had to put ramp on to stop the shaking which I guess cancels out the FOT's. And she was telling me I shouldn't change any settings without talking to my Doctor. She said with ramp it didn't happen cause its a diff pressure, So I explained to her I put the start pressure same as my prescribed pressure 9.0. and was only using ramp to simply stop the shakes for a bit. At one point she said its probably shaking cause you put it on autoset. She said it was probably cause I'm changing the settings and it was my fault. Then I had to explain to her it also happened with resmed elite they gave me that doesn't have autoset. What a waste of time. I really just had to keep my mouth shut, I was so tired and dizzy I coudln't make a scene even if I wanted to.
So I gave up and just humored her, even though I can tell she wrote me off maybe before I even got there. So from the get go she didnt' want to hear anything I had to say, because I'm just the patient and she is the doctor, and what would I know, how dare I even question anything is the feeling I got......what a disappointment.
So I get home with the new mask. She said she checked the settings on my machine. But she didn't change anything!! they were still the same autoset settings I had set when testing it out. I wonder if she even looked at it. I even had airplane mode on lol. So I set the machine back to straight cpap pressure of 9.0 took ramp off, same settings she said when I got her to tell me what she supposedly set at the lab. She told me it was going to be a secret so I wouldn't think about it. Cause I shouldn't be thinking about these things which is causing problems. BUt on the home machine I immediately I started feeling the fot shaking as I finished my exhale. And not surprised.
Could it be the hose? Actually before I left I coudln't even find the doctor I walked around looking for to tell her I was leaving. I found her washing her hands in a sink around the corner, and I asked her if its possible I did something to the hose that could be causing the shaking since it happened on both machines. She said no thats not possible its probably the mask. . SO I said I'll cross my fingers thanks and bye.
Now you really won't believe this sh*t, but ever since I plugged in the machine back at my house, its also showing nothing but ahi 0.0 again. replugging is not helping... and also its like sometimes I feel like I'm getting enough air, other times I feel like I'm not and pull the mask off. The Home care place swears these are new machines. I have to take their word for it. Cause unlike the very first brick these last two machines weren't unboxed right in front of me....
BUt I'm starting to think this is just a fake industry, like snake oil. Maybe all these machines just suck and most people don't care or are not bothered by them. Now I'm more P*ssed then ever, the stress of trying to make this work is more unhealthy then never trying these fake machines out at all..
My insurance company case worker wanted me to call her and tell her how the lab went. I'm gonna tell her it was a waste of time and this is a no go. The Northwell sleep departments, the dme, the resmed machines, are all scams. Sorry if I hurt anybodies feelings.
Time to give up on treatment like everyone else I know did. Lets face it, its like back problems. 9 out of 10 people have some form of moderate sleep apnea and the problem is doctors can't tell whos life is really impeded by it and who just likes playing a martyr, so their job is to push people away cause they can't treat everyone...I don't beg for pain pills at the doctors office like most people, I don't beg for any treatment. Dig me a hole and I'll see these frauds in the next life.