Highly allergic to silicone
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- Posts: 5
- Joined: Tue Mar 29, 2016 1:30 pm
Highly allergic to silicone
Hi, I had a CPAP machine for 2½ years and had nothing but trouble my face swelled, my eyes swelled shut, I got eczema in different patches on my face and arms. I live in Sweden and there was no mask without silicone. I tried covering it with everything imaginable. Finally found a place in the US that made gel masks that you place on your face and put the mask over it. It worked most of the time but the slightest move and it would come near my eyes and they would be swollen the next day. The gel lasted 4 to 6 weeks and not the months it sounded like.
I lost 50 pounds and the dr stopped the machine and said to lose another 10. Well I am sick with many things and no matter that I went on a dr approved 500 cal diet a day for a month I never lost an ounce. That is how I lost the 50. Dr says I am to sick to lose. ok well it has been 2 years and I gained 4½ pounds. Seems exactly where my body wants to stay. But I once again am snoring like crazy, wake up more tired than when I went to bed. I do have chronic fatigue from waiting 2½ years before the doctor would believe I had a real problem. When I fell asleep talking to him he ran tests again and I stopped breathing 58 times an hour. Some times were 1½ to 2 minutes of no breathing. That is when my cat woke me up but she died at the age of 19½ and my new cat hasn't a clue. He would let me die and then move because I got cold.
I see that the price of the gel has gone up and so has the postage. I don't have 65 dollars a month to spend on the gel.
I have wondered if rope caulk or putty in a rope would work??? I could order that from the USA.
I am desperate. In a month I will have the sleep test done again and then after the doctor reads the results will go through the machine and mask part. I must say we are fit with the masks and machines and we don't pay a penny for them. But when I tried before they said they had no money to pay for the gel. We are told if we have a serious illness and what is needed is not available here it will be ordered from where ever has it. not true.
I have found full face masks advertised with gel but when I have called or emailed there is silicone over the gel. The material type masks do not work. Been there and tried them. I am a mouth breather and they simply don't work.
What should I do? What would you do? There must be others with the same problem. I am beginning to think being allergic to silicone is like needing an orphan drug - not enough people with the problem to worry about it. This gel thing was really for people who even with well fitted masks that still leak.
I have a back injury and have only been able to lay on my back for years and years. So no problem with different positions causing a problem.
I probably have 3 months before I actually get my machine just want to get things settled.
Is there something in the rope putty that would cause allergies? I read people used it for face peels. I don't want to peel my face right off with constant use. Thank you all and God Bless this apnea thing is not fun. Some days I literally sleep all day and all night with maybe an hour or 2 awake. I am almost 70 and while I am alive I would like to be awake while living it. Bonnie Jean an American in Sweden
I lost 50 pounds and the dr stopped the machine and said to lose another 10. Well I am sick with many things and no matter that I went on a dr approved 500 cal diet a day for a month I never lost an ounce. That is how I lost the 50. Dr says I am to sick to lose. ok well it has been 2 years and I gained 4½ pounds. Seems exactly where my body wants to stay. But I once again am snoring like crazy, wake up more tired than when I went to bed. I do have chronic fatigue from waiting 2½ years before the doctor would believe I had a real problem. When I fell asleep talking to him he ran tests again and I stopped breathing 58 times an hour. Some times were 1½ to 2 minutes of no breathing. That is when my cat woke me up but she died at the age of 19½ and my new cat hasn't a clue. He would let me die and then move because I got cold.
I see that the price of the gel has gone up and so has the postage. I don't have 65 dollars a month to spend on the gel.
I have wondered if rope caulk or putty in a rope would work??? I could order that from the USA.
I am desperate. In a month I will have the sleep test done again and then after the doctor reads the results will go through the machine and mask part. I must say we are fit with the masks and machines and we don't pay a penny for them. But when I tried before they said they had no money to pay for the gel. We are told if we have a serious illness and what is needed is not available here it will be ordered from where ever has it. not true.
I have found full face masks advertised with gel but when I have called or emailed there is silicone over the gel. The material type masks do not work. Been there and tried them. I am a mouth breather and they simply don't work.
What should I do? What would you do? There must be others with the same problem. I am beginning to think being allergic to silicone is like needing an orphan drug - not enough people with the problem to worry about it. This gel thing was really for people who even with well fitted masks that still leak.
I have a back injury and have only been able to lay on my back for years and years. So no problem with different positions causing a problem.
I probably have 3 months before I actually get my machine just want to get things settled.
Is there something in the rope putty that would cause allergies? I read people used it for face peels. I don't want to peel my face right off with constant use. Thank you all and God Bless this apnea thing is not fun. Some days I literally sleep all day and all night with maybe an hour or 2 awake. I am almost 70 and while I am alive I would like to be awake while living it. Bonnie Jean an American in Sweden
- chunkyfrog
- Posts: 34400
- Joined: Mon Jul 12, 2010 5:10 pm
- Location: Nebraska--I am sworn to keep the secret of this paradise.
Re: Highly allergic to silicone
Circadiance makes FABRIC masks.
https://www.cpap.com/productSearch.php#::::Circadiance:
Pad a Cheek sells mask liners.
Hopefully, one of these items might help you use your machine without pain.
Rope caulk or putty is not intended to be used on human skin.
https://www.cpap.com/productSearch.php#::::Circadiance:
Pad a Cheek sells mask liners.
Hopefully, one of these items might help you use your machine without pain.
Rope caulk or putty is not intended to be used on human skin.
_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Airsense 10 Autoset for Her |
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- Posts: 5
- Joined: Tue Mar 29, 2016 1:30 pm
Re: Highly allergic to silicone
Thank you SO much! While I won't have a machine for 2 to 3 months next month I can ask the type of machine and name of the mask I will have. I called the company and the lady said they could help me find the mask that would fit as long as I had the number and name. Also she suggested I could even have it sent to my family in the US and have them mail it on to me as it would be cheaper than the $15 postage! I was thrilled to find out they last at least 6 months to a year and many people still have their first one 2 years later.
I figured the putty would not be good but I just couldn't afford at least 65 dollars every 6 weeks. I can now rest easy knowing I won't have to sit outside a store with a cup in my hand begging. Thank you so much for the help. Now I can go to bed as it is tomorrow here. 12:10 AM March 30th. So I will go to bed and stop breathing once a minute until morning. I need a help dog but if Sweden won't pay for a different mask I doubt I can ask for a dog. lol
Thank you again. Bonnie Jean
I figured the putty would not be good but I just couldn't afford at least 65 dollars every 6 weeks. I can now rest easy knowing I won't have to sit outside a store with a cup in my hand begging. Thank you so much for the help. Now I can go to bed as it is tomorrow here. 12:10 AM March 30th. So I will go to bed and stop breathing once a minute until morning. I need a help dog but if Sweden won't pay for a different mask I doubt I can ask for a dog. lol
Thank you again. Bonnie Jean
- Islandwoman
- Posts: 319
- Joined: Sun Dec 22, 2013 8:15 pm
- Location: Pacific Northwest
Re: Highly allergic to silicone
I have used SleepWeaver masks for over two years and have been very happy with them. I am enclosing the Circadiance website as there is a lot of information an fitting etc. The respond quickly to emails. http://www.circadiance.com/products/
YouTube has many videos on fitting and adjusting. Good luck.
YouTube has many videos on fitting and adjusting. Good luck.
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- Posts: 5
- Joined: Tue Mar 29, 2016 1:30 pm
Re: Highly allergic to silicone
Thank you for the link. I had the nose one and got a sinus infection that lasted for weeks. I have read reviews and most people were unhappy with any of the types available. The only good reports were on fast delivery and replacing missing parts. I would have tried it if I hadn't found the Pad a Cheek mask liner. In one phone call I found out so much and was assured if it didn't work I could return it, have it replaced, whatever I wanted. It is also a price I can afford. Here in Sweden the machines, hoses, masks everything are free. So 20 dollars for the Pad a Cheek mask liner is a blessing. But thank you for writing I do appreciate everyone's ideas and if I have trouble with Pad a Cheek I know where else to turn to. One complaint people had was the seams irritated their faces. If I just look in the mirror funny my face gets irritated. Well almost. But the lines in my face from before using the gel stayed a good 4 or 5 hours.
Thank you, Bonnie
Thank you, Bonnie
- chunkyfrog
- Posts: 34400
- Joined: Mon Jul 12, 2010 5:10 pm
- Location: Nebraska--I am sworn to keep the secret of this paradise.
Re: Highly allergic to silicone
I used a Sleepweaver Elan mask for about a year.
Many of the complaints relate to the difficulty learning to wear the mask.
Much is counter-intuitive (directions are essential), and watching their videos is very helpful.
Many of the complaints relate to the difficulty learning to wear the mask.
Much is counter-intuitive (directions are essential), and watching their videos is very helpful.
_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Airsense 10 Autoset for Her |
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- Posts: 5
- Joined: Tue Mar 29, 2016 1:30 pm
Re: Highly allergic to silicone
Thank you for the information. If the other cheek pad mask doesn't work out I will try the sleepweaver. It is just the price right now. It would take all the money I have for a month to buy it. I do love the how to video's and when I have anything I am no sure of I go to the video's. Thank you! Bonnie Jean
Re: Highly allergic to silicone
Bonnie I am you are still hear reading this!! I am in exactly the same situation as you - I seem to be allergic to silicone.
I have tried the Circadince masks. I struggled with them for months and months and they do NOT work!!! At least for me. They were not treating the sleep apnea. I felt like I was dying after using it for 3 weeks, which I am so angry about.
I have tried the remzz liners. I have tried the padacheek liners. I have made my own liners. Nothing works!!!
I want to know the name of the gel product you mentioned??? I am desperately looking for a solution because without CPAP I don't live.
I have tried the Circadince masks. I struggled with them for months and months and they do NOT work!!! At least for me. They were not treating the sleep apnea. I felt like I was dying after using it for 3 weeks, which I am so angry about.
I have tried the remzz liners. I have tried the padacheek liners. I have made my own liners. Nothing works!!!
I want to know the name of the gel product you mentioned??? I am desperately looking for a solution because without CPAP I don't live.
Re: Highly allergic to silicone
She may not be reading any longer... that was a year ago... but I suggest you see a dermatologist to find out a) if you're actually allergic to the silicone, and b) if an MD would have some kind of answer (tho' not necessarily an OTC pill that either puts you to sleep even when you don't want that, or that keeps you awake all night (been there...) because it's "non drowsy".
_________________
Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
Humidifier: IntelliPAP Integrated Heated Humidifier |