Sleepweaver Elan- other users with MCS?

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canoekeji
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Sleepweaver Elan- other users with MCS?

Post by canoekeji » Tue Dec 15, 2015 10:46 am

So- due to multiple chemical sensitivities the only mask I seem to be able to use is a cloth mask- the Elan. It appears silicone and gel is out- been trying to "purify" a silicone ask for 6 weeks and I still react the second I put it on ( breathing- not contact allergy per se- the fumes fro the mask)

I am able to wear it but my machine keeps showing an "angry red face"- showing there are leaks rather than the happy green face- which shows up very occasionally. Despite that the folks who are reviewing my results say that while the leaks are high my readings have dropped from 55 per hour ( 17 of which were central) to 4- (2 of which are central). Can this really happen that fast- such a drastic drop?

So- is it a case that some therapy is better than none and we live with leaks?

Also- the Elan card in the box says the mask should be replaced every month- are people actually doing that? I believe my med provider will do two per year so I guess if it is monthly the rest are on my own. I do wash the mask every day & the rest of the gear & hoses once per week.
I have been using the machine around two weeks I think- been working on getting a mask option & "safe" hoses for around 2 months. Had to soak hoses for extended period in vinegar & water. This means I will have to order new hoses well in advance to "purify" them.

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Hopefullady
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Re: Sleepweaver Elan- other users with MCS?

Post by Hopefullady » Tue Dec 15, 2015 10:52 am

I have MCS too. There seem to be more and more of us. Would love to talk to you about it sometime.

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chunkyfrog
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Re: Sleepweaver Elan- other users with MCS?

Post by chunkyfrog » Tue Dec 15, 2015 11:03 am

The Elan has replaceable "cushions". No need to replace the entire mask.
https://www.cpap.com/productpage/cloth- ... -mask.html
I was able to get a couple months out of each one, but could have used them longer if I had to.
If your insurance covers replaceable cushions, the HCPCS code is the same as a nasal cushion.

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Re: Sleepweaver Elan- other users with MCS?

Post by Hopefullady » Tue Dec 15, 2015 11:06 am

BTW, I am ok with my mask, so I think my MCS is not as bad as it could be, but I have fibro from living in an apartment for a month that had nylon carpeting. Makes it painful to sleep on sides, hence my having to get CPAP for back sleeping finally

One thing I've noticed is not drinking coffee helps a lot physically, but also caffeine negatively affects the amygdala and hypothalamus (chemical-making parts of brain), so changing little things like that help. After I drink a lot of coffee everything is more odorous. This makes me think stress has a lot to do with MCS.

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LSAT
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Re: Sleepweaver Elan- other users with MCS?

Post by LSAT » Tue Dec 15, 2015 11:23 am

canoekeji wrote:So- due to multiple chemical sensitivities the only mask I seem to be able to use is a cloth mask- the Elan. It appears silicone and gel is out- been trying to "purify" a silicone ask for 6 weeks and I still react the second I put it on ( breathing- not contact allergy per se- the fumes fro the mask)

I am able to wear it but my machine keeps showing an "angry red face"- showing there are leaks rather than the happy green face- which shows up very occasionally. Despite that the folks who are reviewing my results say that while the leaks are high my readings have dropped from 55 per hour ( 17 of which were central) to 4- (2 of which are central). Can this really happen that fast- such a drastic drop?

So- is it a case that some therapy is better than none and we live with leaks?

Also- the Elan card in the box says the mask should be replaced every month- are people actually doing that? I believe my med provider will do two per year so I guess if it is monthly the rest are on my own. I do wash the mask every day & the rest of the gear & hoses once per week.
I have been using the machine around two weeks I think- been working on getting a mask option & "safe" hoses for around 2 months. Had to soak hoses for extended period in vinegar & water. This means I will have to order new hoses well in advance to "purify" them.


What do you think you are "purifying"? Cleaning your hose is a complete waste of time. The only thing that goes through the hose is filtered air mixed with clean distilled water. Hoses will last a year or more and really need no more than ..maybe..a rinse occasionally.

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Re: Sleepweaver Elan- other users with MCS?

Post by Pugsy » Tue Dec 15, 2015 11:29 am

canoekeji wrote:So- is it a case that some therapy is better than none and we live with leaks?
Not ideal of course but I have always felt that preventing even 1 apnea event is better than not preventing.

Example...if half of an 8 hour night was spent with leaks within acceptable limits and the other half the leaks were so bad we couldn't trust the machine to be reporting accurately...that's 4 hours of for sure optimal therapy vs 4 hours of maybe or maybe not optimal therapy.

The problem with big leaks and low AHI during the time of big leaks is that we don't know if the AHI is low because nothing much happened or the leaks were so bad the machine couldn't sense what was going on.

But in general...even if the leaks were so bad that the machine missed a truck load of events during the time of large leak...the times when the leaks were within acceptable limits and those apnea events were prevented make it better than not using cpap. I would take 4 hours of therapy over 8 hours of no therapy at all any day of the week. Not ideal of course but every apnea event that gets prevented lessens the stress to my body. I would still work on trying to limit the times in large leak but I wouldn't beat myself up over not having stellar leak reports and I sure wouldn't quit using cpap just because I had serious issues half the night....I would concentrate on the other half of the night where I had success....it's way better than no success at all.

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Re: Sleepweaver Elan- other users with MCS?

Post by Pugsy » Tue Dec 15, 2015 11:39 am

You are using a ResMed machine I think...

Have you used software to determine just how bad the leaks were?
ResMed machines have a pretty strict line in the sand at 24 L/min excess leak and then Mr Frowny shows up if you spend 30% or more of the night over 24 L/min.
Therapy doesn't go to hell if you hit 26 L/min though...it goes into the toilet gradually and the higher you go above 24 L/min the further in the toilet things go. From my own personal experience with some times in large leaks...up to around 30 L/min the machine can still sense and flag and respond to apnea events...between 30 to 35 L/min things start getting more iffy and I might see some apnea events but I get a lot of unknown apnea events flagged because the machine could sense something but not what to call it.
Over 35 L/min and the machine doesn't seem to respond or flag anything...so it's during those leak times that the AHI might not be accurate if it is showing nothing going on.....we don't know for sure if nothing happened or the machine simply missed what might have happened.

So when evaluating therapy effectiveness....don't go just by Mr Frowny face....go look at the leak data up close.
Mr Frowny might be showing up because 30% of the night your leak was above 24 L/min but less than 30 L/min which isn't horribly far into the toilet.

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canoekeji
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Re: Sleepweaver Elan- other users with MCS?

Post by canoekeji » Tue Dec 15, 2015 12:36 pm

LSAT- "purifying" is part of the life of people with Multiple Chemical sensitivities- plastic hoses smell toxic to me and I have to try to take out the plastic smell. Vinegar & water soak have made hoses tolerable.

When I got the Small Resmed airfit & machine I was so excited- and with less than 2 hours sleep most nights I didn't do what I always do- "process" anything that comes into my house. The provider didn't tell me to wash it either. So- I put the machine together- donned the mask & made it 4 hours. All good- so it seemed. Next night- 6 hours but- awoke with burn like effect around nose and upper lip and the feeling of partial paralysis down the left side of my neck- that feeling in the neck persisted for 4 days. In addition- the reaction to the mask and hoses made me hypersensitive so once more I started reacting to things in my environment that I had previously been able to use/wear- yes- even to certain clothes.

Now- even to handle the silicone mask- which has now been processed-soaked in vinegar- aired, etc causes issues for me. I even tried liners but it is the sell of the air as it passes through the ask as near as I can tell in addition to the mask itself. Hence- the Sleepweaver being the only option for me.

I do have latex allergy so I guess that extends to silicone- though people find it strange this is the case- maybe not for most but indeed for me it is.

I know to people w/o MCS it just seems "silly" but I have learned what some of the triggers are so I do what I can to keep my toxic load low. So far I only have MCS and not full blown environmental illness- I am trying to avoid the latter as that would mean I could no longer work.

Pugsy- no- haven't tried the software- is that the Sleepyhead that I have seen people refer to or is there something unique to my machine? Yes- Resmed for Her is my machine. I go see provider for follow-up tomorrow so have printed your comments to take with me. Is that 24 Leaks per minute?

Chunkyfrog- yes- spotted how to order just mask for Elan- may just get a few on my own- and a set of hoses- if provider is problematic just so I can have all "processed" and ready to use as needed.

Hopefullady- sure- we can connect on the joys of CPAP and MCS. Maybe sleep will improve some of MCS issues.

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Re: Sleepweaver Elan- other users with MCS?

Post by chunkyfrog » Tue Dec 15, 2015 12:51 pm

Even I can have a touch of burning from new plastic outgassing, and I am pretty tough, (for a frog).
I will use your vinegar rinse in the future, though usually a touch of aromatherapy on the nightstand is enough.
If the vinegar smell bothers me, I can eat a pickle.

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Re: Sleepweaver Elan- other users with MCS?

Post by Pugsy » Tue Dec 15, 2015 1:04 pm

canoekeji wrote:Pugsy- no- haven't tried the software- is that the Sleepyhead that I have seen people refer to or is there something unique to my machine? Yes- Resmed for Her is my machine. I go see provider for follow-up tomorrow so have printed your comments to take with me. Is that 24 Leaks per minute?
Yes the software is SleepyHead or even ResScan (which is likely what your provider uses).
Leaks are measured in the amount of airflow per minute and not individual leaks so it it L/min or Liters per minute.

There are 2 types of leaks...the mask has an intentional leak or vent rate. This has to happen so that we don't keep breathing our own exhaled breath which is high in carbon dioxide.
The other type of leak is what we call excess leak or leaks above the expected vent rate.
Your machine removes the expected vent rate from the reported leak numbers and all you see is excess leak being reported. These machines all can compensate for a fair amount of excess leak and still not get into too much trouble but above a point and the machine starts running into trouble in sensing, reporting and responding because it's sensors can't work optimally.

The cloth masks historically have always seemed to have both a higher vent rate (through the holes in the material) and a tendency to be a bit more difficulty to manage excess leaks so seeing Mr Frowny isn't all that unusual with the cloth masks for a lot of people.

I would be interested in seeing your actual leak line to see just how bad it really is. It's very possible that the bulk of the excess leak might actually be the normal venting.
ResMed machines deduct a generic vent rate number prior to reporting excess leak and that number is tied to the mask choice you make on your machine. ResMed has no way to incorporate all masks out there and get that generic number that gets subtracted exactly spot on accurate...it's going to be at best ..close.
So it wouldn't be impossible for your machine to maybe be using a not so accurate baseline vent rate number in its calculations before reporting excess only leaks.

Hard to explain but let's say that the baseline is 5 L/min off for some reason which could make the real excess leak line at 29 L/min instead of 24 L/min but over 24 still gets the flag when in reality it really isn't necessarily all that bad.
Again while not ideal sometimes in life we don't get ideal and we have to make compromises and in your situation...well we might have to make a compromise and accept less than ideal right now and work on bettering things as time goes on.

Later on when you have some time and feel up to doing a little bit of extra work I would like to maybe get a chance to review the data files on your SD card to see just how bad those leaks really are in terms of having a negative impact on therapy itself. No rush though. When you feel up to it just let me know and I will explain what I need you to do so I can see what is available on your SD card.

Right now the most important thing is just using the machine when you can and in any manner you can use it with however many leaks there ends up being....it is still better than not using it.

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Stormynights
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Re: Sleepweaver Elan- other users with MCS?

Post by Stormynights » Tue Dec 15, 2015 2:04 pm

I just remembered, the last elan I used didn't have vent holes. Well they were there but there was no air exhausted through the holes. This was causing excessive leaks because the mask would lift off my face to let the air out. I took a large darning needle and ran it through every hole and it really helped the leaks. You might try this on an old mask to see if this helps you.

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Re: Sleepweaver Elan- other users with MCS?

Post by bwexler » Tue Dec 15, 2015 5:06 pm

I just replaced my Élan after 7 months. What a difference from old to new.
I was eligible after six months but it took Crapria a month to realize that a Mirage was not an Élan and actually get the Élan. I am still waiting for the feather weight hose, but 3 or 4 deliveries is normal for an order with 5 items, isn't it.
I will probably go for the next new cushion after 3 months, although the head gear Velcro is as problematic as the mask. After 4 or 5 months it looses its grip on the side that I use every day.

I make it a point to wash the mask at least once a year, unless I have already replaced it.

My heated hose never gets washed, but I replace it every year or two.

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Re: Sleepweaver Elan- other users with MCS?

Post by davesos » Fri Feb 12, 2016 2:29 pm

I have MCS too and am trying to use the CPAP without doing more harm.

I recently ordered the Elan mask. What do you use to clean the mask when you wash it?

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Re: Sleepweaver Elan- other users with MCS?

Post by chunkyfrog » Fri Feb 12, 2016 5:43 pm

Circadiance's cleaning instructions are near the bottom under Tips/cleaning
https://www.cpap.com/productpage/single ... l#tips-tab
Note: baby shampoo is a no-no. As are liquid soaps or anything with conditioner.
I used Method unscented hand soap. Some recommend Dr. Bronners.

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Re: Sleepweaver Elan- other users with MCS?

Post by canoekeji » Sat Feb 13, 2016 7:49 pm

I use Nature Clean dish detergent to clean my Elan- usually wash it every second day or I have a high leak rate.

The cloth ask is great but I will soon have to order new headgear as the Velcro is starting to lose its grip- I will get back up set then see if I can just replace the Velcro on the old one once I have a backup.

I still haven't managed to use any mask other than the Elan - silicone masks cause reactions- though I am trying to make the one I have tolerable with continued washing.

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