Hello,
I'm new to this forum, and I am really glad to find all of the info available here. I have OSA, and I have been using a Sullivan AutoSet T machine, with a Mirage Phantom Gel Mask for the last 4 years. I have been dumbly suffering the straps cutting into my face all of this time because I didn't know anything about the other masks on the market. I just kept re-ordering the same mask about every 10 months.
I have a Fibromyalgia, Diabetes, and several other health issues, and I don't get out of the house very often anymore. I recently forced myself to go to the local supplier and the rep there advised me to try the Swift Nasal Pillow system. That was on a Friday, and by Monday morning my nose was killing me. Then she advised me to get a heated humidifier. My doctor ordered it for me, and a few days later, I went back to the store and got a humidifier system. I am able to hook up to my machine by using an extra hose. All of this has been a really serious problem for me. The heated humidifier is helping a lot with the nasal soreness. I think I can handle that part, but how on earth does one keep the headgear in place all night??
I have discussed this problem with rep from the store, and to hear her tell it, no one has ever had a problem with this before. She said to try bobby pins, hair clips, or something. I have very long hair, and I have tried it with my hair down, in a ponytail, pinned up, and used bobby pins, hairclips, etc. So far, the blasted thing still moves around on me. The bobby pins just work their way out during the night and I wake up with them all around my head, ha, ha. I am a very light sleeper, and I am having a very rough time resting. I had to use a sleepcap over my hair with the old Phantom mask to keep the velcro straps from pulling my hair out - OUCH! The haircap is useless with the Swift.
I have tried it with the straps adjusted various ways, but can't seem to get this thing to stay put. Please Help!! If anyone has any experience with the Swift, I would really love to hear about it. I can still return this and get a different mask, but I have to do it very soon, or not at all. I would also like to know if you are familiar with the Sullivan AutoSet T machine. No one has ever told me the first thing about it, and I just hook up to it each night and hope for the best...
Thanks! Patricia
Resmed Mirage Swift headgear problems
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Janelle
First of all, adjust the straps rather loose. The interface will stay in place if you are using the right size nasal pillows.
I'm a side sleeper and had Nike marks on my right cheek every morning plus my hair was wearing thin from the friction of the top strap, so I purchased a Tiara sleepcap, cut a small slot for each side of the barrel to accomodate the ends, cut off the top straps and reattached them down at a right angle to the bottom straps, sewing the top edge to the cap and then wrapping the velcro end around the bottom strap. I find the elastic straps can also be adjusted rather loosely, but the whole thing stays in place really well, and no more hair loss or hair sticking up all over the place. To take it off I unplug the end that does not have the hose attached.
I'm a side sleeper and had Nike marks on my right cheek every morning plus my hair was wearing thin from the friction of the top strap, so I purchased a Tiara sleepcap, cut a small slot for each side of the barrel to accomodate the ends, cut off the top straps and reattached them down at a right angle to the bottom straps, sewing the top edge to the cap and then wrapping the velcro end around the bottom strap. I find the elastic straps can also be adjusted rather loosely, but the whole thing stays in place really well, and no more hair loss or hair sticking up all over the place. To take it off I unplug the end that does not have the hose attached.
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sleepwalker103
- Posts: 13
- Joined: Fri May 27, 2005 2:49 am
Thanks Janelle,
I am trying to visualize the cap you modified. I called the therapist at the store today. She says she's going to contact ResMed and see if they can suggest something that will work with the Swift System. It's really hard to believe that I am the only person having trouble with this headgear staying in place. She said she's sold about 50 other sets like mine - oh well... I am hoping she will have an alternative tomorrow. I really appreciate your input and may end up trying to make something work, like you suggested
Best regards,
Patricia
I am trying to visualize the cap you modified. I called the therapist at the store today. She says she's going to contact ResMed and see if they can suggest something that will work with the Swift System. It's really hard to believe that I am the only person having trouble with this headgear staying in place. She said she's sold about 50 other sets like mine - oh well... I am hoping she will have an alternative tomorrow. I really appreciate your input and may end up trying to make something work, like you suggested
Best regards,
Patricia
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christinequilts
- Posts: 489
- Joined: Sun Jan 23, 2005 12:06 pm
Patricia-
I have long hair and have used a Swift for over 6 months. What I do is put my hair in a pony tail and then put the mask on with one strap above and one strap below the ponytail. Once its situated I take the ponytail out and let my hair hold the bottom strap down- its worked pretty well for me and I actually wonder how people without long hair wear it (or any mask- I've done something similar for other mask too).
I have long hair and have used a Swift for over 6 months. What I do is put my hair in a pony tail and then put the mask on with one strap above and one strap below the ponytail. Once its situated I take the ponytail out and let my hair hold the bottom strap down- its worked pretty well for me and I actually wonder how people without long hair wear it (or any mask- I've done something similar for other mask too).
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sleepwalker103
- Posts: 13
- Joined: Fri May 27, 2005 2:49 am
Christinequilts,
Wow, do you really quilt? I want to learn to do that. Sorry, off the subject, but it sounds so interesting. I too have very long hair, and I have done the same thing you do, several times. Like you, I wonder how on earth the people with short hair keep the Swift on. I've all but Super-glued it to my head - ARGH!! I am accustomed to wearing a nasal mask and it totally stayed put, with no leaks. I kept the straps pulled tight on it, and it cut into my face badly, but it didn't get loose. I guess that's why the new one is so unsettling to me. It feels like it's just dangling there, and it bobbles around a lot. I wake up grabbing the darn thing to get it back into place. I have tried all 3 sizes of the pillows, hoping for a better seal. I think the Medium ones are best for me. I just feel so exhausted, and frustrated, every day from the struggle to keep it from leaking. I don't think my insurance will pay for me to have 2 masks. I may have to wait till I can afford it, and buy a different mask, and try switching back and forth. From reading the board, I see that is what some folks are doing. I know it takes a lot of patience, and tweaking to get adjusted to any mask, but I am so upset over this that I feel like screaming when it keeps flopping around each night. My husband gets mad because he hears me flopping around and re-adjusting, so he starts thrashing around and kicking. Sorry to be such a whiner, but there is NO ONE here at my house for me to talk to about this. My husband does not like to hear any complaints about this, or anything else regarding my health problems, so I just grin and bear it. It makes me feel better to read here about other's in the same boat, and how they manage to cope.
Wow, do you really quilt? I want to learn to do that. Sorry, off the subject, but it sounds so interesting. I too have very long hair, and I have done the same thing you do, several times. Like you, I wonder how on earth the people with short hair keep the Swift on. I've all but Super-glued it to my head - ARGH!! I am accustomed to wearing a nasal mask and it totally stayed put, with no leaks. I kept the straps pulled tight on it, and it cut into my face badly, but it didn't get loose. I guess that's why the new one is so unsettling to me. It feels like it's just dangling there, and it bobbles around a lot. I wake up grabbing the darn thing to get it back into place. I have tried all 3 sizes of the pillows, hoping for a better seal. I think the Medium ones are best for me. I just feel so exhausted, and frustrated, every day from the struggle to keep it from leaking. I don't think my insurance will pay for me to have 2 masks. I may have to wait till I can afford it, and buy a different mask, and try switching back and forth. From reading the board, I see that is what some folks are doing. I know it takes a lot of patience, and tweaking to get adjusted to any mask, but I am so upset over this that I feel like screaming when it keeps flopping around each night. My husband gets mad because he hears me flopping around and re-adjusting, so he starts thrashing around and kicking. Sorry to be such a whiner, but there is NO ONE here at my house for me to talk to about this. My husband does not like to hear any complaints about this, or anything else regarding my health problems, so I just grin and bear it. It makes me feel better to read here about other's in the same boat, and how they manage to cope.
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sleepless in ny
- Posts: 15
- Joined: Sun May 01, 2005 1:36 pm
- Location: upstate ny..but not new york city
Hi Guys,
After reading these posts I had to go into my bedroom to check out my headgear ( I use the Swift also). I don't have any velcro on my headgear at all. It has straps that are made from something that reminds me of craft foam that you cut letters or numbers from. It's very soft & flexible. The only problem that I had was where it hits behind my ear. I ended up putting a make up sponge under it until it stretched out a bit. Now it's very comfortable and I don't' have to have it tight either.
I've only had mine for 1 week so maybe they are making them different now. I have finally gotten use to the pillows and they don't bother my nose anymore. I took someone's advice & got some of the AYR gel for my nose. It helps tremendously.
Kathy
After reading these posts I had to go into my bedroom to check out my headgear ( I use the Swift also). I don't have any velcro on my headgear at all. It has straps that are made from something that reminds me of craft foam that you cut letters or numbers from. It's very soft & flexible. The only problem that I had was where it hits behind my ear. I ended up putting a make up sponge under it until it stretched out a bit. Now it's very comfortable and I don't' have to have it tight either.
I've only had mine for 1 week so maybe they are making them different now. I have finally gotten use to the pillows and they don't bother my nose anymore. I took someone's advice & got some of the AYR gel for my nose. It helps tremendously.
Kathy
If life is a bowl of cherries what am I doing in the pits? Remstar Pro C-flex Heated Humidifer,, Mirage Swift Nasal pillow system
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sleepwalker103
- Posts: 13
- Joined: Fri May 27, 2005 2:49 am
Hi Kathy,
They are still using the foam straps like yours, with no velcro. The velcro I mentioned was on my old headgear, that went with the Phantom full nasal mask. It's the new foam headgear I am struggling with. Mine keeps slipping out of place during the night. I am trying to figure out how to keep it on all night. I got used to the nasal pillows after getting the heated humidifier, but keeping it on is another issue. I guess I move around a lot more in the night than most people. I have a lot of severe pain and I toss and turn, never able to get comfortable for very long.
I got hooked on AYR Nasal Gel late last year when I had a bad cold. I love the stuff, and I have appreciated it even more since I went on the nasal pillow system. I bought a tube of nasal moisturizer from the store where I get my equipment. It's a non-petroleum base product, but kind of runny, and doesn't go very far. The AYR is far better than the stuff they sell, and less expensive, too. The respiratory therapist never heard of AYR! I think those folks need to visit this board and read some of our posts so they can stay better informed.
I had to miss my appt. with the resp. therapist today because I am just hurting too bad to go anywhere. I rescheduled for Monday since I have to get out then to take my Mom to her doctor.
Patricia
They are still using the foam straps like yours, with no velcro. The velcro I mentioned was on my old headgear, that went with the Phantom full nasal mask. It's the new foam headgear I am struggling with. Mine keeps slipping out of place during the night. I am trying to figure out how to keep it on all night. I got used to the nasal pillows after getting the heated humidifier, but keeping it on is another issue. I guess I move around a lot more in the night than most people. I have a lot of severe pain and I toss and turn, never able to get comfortable for very long.
I got hooked on AYR Nasal Gel late last year when I had a bad cold. I love the stuff, and I have appreciated it even more since I went on the nasal pillow system. I bought a tube of nasal moisturizer from the store where I get my equipment. It's a non-petroleum base product, but kind of runny, and doesn't go very far. The AYR is far better than the stuff they sell, and less expensive, too. The respiratory therapist never heard of AYR! I think those folks need to visit this board and read some of our posts so they can stay better informed.
I had to miss my appt. with the resp. therapist today because I am just hurting too bad to go anywhere. I rescheduled for Monday since I have to get out then to take my Mom to her doctor.
Patricia
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rock and roll
- Posts: 1222
- Joined: Mon Nov 01, 2004 7:30 pm
- Location: Texas
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sleepwalker103
- Posts: 13
- Joined: Fri May 27, 2005 2:49 am
Thanks Rock and Roll,
I see you are also in TX. We live near Ft. Hood. My husband recently retired, with 24 years in the US Army. It is sooo hot here already!
I really appreciate the encouraging words from you guys here. People who don't experience these things just can't seem to relate to how frustrating it can get at times. I made up my mind in the beginning, 4 years ago, that I would deal with this in a positive way and not let it get to me. I had no idea that it would be such a challenge to switch masks! I hated the straps cutting into my face every night, but I realize now that it did have the benefit of a more "secure" feeling.
I basically flew by the seat of my pants up until now. The rep just dropped off all the equipment 4 years ago and I never heard another word from them. The company here had gone out of business. They were supposed to get back in touch with me in a few weeks, but never did. I figured out how to use it all on my own, and found a supplier later to replace the mask as needed. Now we have a local store here, and I get my equipment there.
I have learned more about the disease and all the equipment here on this board in the last few days than I ever imagined was available. It's clear that there is no "magic bullet" as far as the masks, etc. are concerned. My family says, "Why don't you just find out which one is the BEST ONE and get that one, and be done with it." Nothing is ever that simple, but most people don't get that. What works wonders for some is awful to someone else.
I am going to keep on using the Swift, and I think I will eventually get used to the looser fit. I am such a light sleeper, and when I sense the headgear moving around, I wake up thinking something is wrong. The only way my old mask ever moved was if a strap worked loose, and that rarely ever happened. I am going through very nearly the same thing I went through 4 years ago, when I had to get used to the first mask. I have NEVER just yanked off the mask, and done without it, because I know how badly I need to use it. I have had to remove the old one at times when I had a really severe head cold/flu, but could not rest well without it.
Best regards to all!
Patricia
I see you are also in TX. We live near Ft. Hood. My husband recently retired, with 24 years in the US Army. It is sooo hot here already!
I really appreciate the encouraging words from you guys here. People who don't experience these things just can't seem to relate to how frustrating it can get at times. I made up my mind in the beginning, 4 years ago, that I would deal with this in a positive way and not let it get to me. I had no idea that it would be such a challenge to switch masks! I hated the straps cutting into my face every night, but I realize now that it did have the benefit of a more "secure" feeling.
I basically flew by the seat of my pants up until now. The rep just dropped off all the equipment 4 years ago and I never heard another word from them. The company here had gone out of business. They were supposed to get back in touch with me in a few weeks, but never did. I figured out how to use it all on my own, and found a supplier later to replace the mask as needed. Now we have a local store here, and I get my equipment there.
I have learned more about the disease and all the equipment here on this board in the last few days than I ever imagined was available. It's clear that there is no "magic bullet" as far as the masks, etc. are concerned. My family says, "Why don't you just find out which one is the BEST ONE and get that one, and be done with it." Nothing is ever that simple, but most people don't get that. What works wonders for some is awful to someone else.
I am going to keep on using the Swift, and I think I will eventually get used to the looser fit. I am such a light sleeper, and when I sense the headgear moving around, I wake up thinking something is wrong. The only way my old mask ever moved was if a strap worked loose, and that rarely ever happened. I am going through very nearly the same thing I went through 4 years ago, when I had to get used to the first mask. I have NEVER just yanked off the mask, and done without it, because I know how badly I need to use it. I have had to remove the old one at times when I had a really severe head cold/flu, but could not rest well without it.
Best regards to all!
Patricia
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Janelle
Patricia, you mentioned a lot of problems with chronic pain preventing you from sleeping. Seems to me that is something you need to seek treatment for in the form of medication, therapy or other. I, too have a lot of pain problems (bone spurs, herniated disc) but have been able to resolve most of them with medication and non-surgical treatment in the form of injections and nerve burning with lasers.
If you are adverse to medication or can't afford those, there is always OTC remedies. Personally, I got along for a long time before my first knee surgery with just Aspercreme. It doesn't smell, doesn't burn and most important of all it WORKS. Great analgesic. But if you have major arthritic or other problems you really need to take care of them. A friend of mine recently had both knees replaced under a State program that paid for most of the cost of the surgery. I'm sure there are similar programs in other states for low income families or others who meet the criteria.
If you are adverse to medication or can't afford those, there is always OTC remedies. Personally, I got along for a long time before my first knee surgery with just Aspercreme. It doesn't smell, doesn't burn and most important of all it WORKS. Great analgesic. But if you have major arthritic or other problems you really need to take care of them. A friend of mine recently had both knees replaced under a State program that paid for most of the cost of the surgery. I'm sure there are similar programs in other states for low income families or others who meet the criteria.
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rock and roll
- Posts: 1222
- Joined: Mon Nov 01, 2004 7:30 pm
- Location: Texas
Great note sleepwalker,
I live down near Houston on Lake Conroe. Hot is not the word right now, it is also sultry doen here. I have lived here all my life and I am still not used to it. I have to wear a suit in my job and I travel by car a lot. Of course the car is like an oven between sales calls and getting in wearing a starched shirt is horrible. But it is home.
I think all doctors and DMEs should require their patients to join a forum. DMEs should be ashamed of themselves with how they just don't care once they deliver the cheapest goods possible to us after the insurance pays them the highest price possible. I would like to think that the insrance companies pay them so much to handle all our issues. What a racket!
Hang in there and take care.
I live down near Houston on Lake Conroe. Hot is not the word right now, it is also sultry doen here. I have lived here all my life and I am still not used to it. I have to wear a suit in my job and I travel by car a lot. Of course the car is like an oven between sales calls and getting in wearing a starched shirt is horrible. But it is home.
I think all doctors and DMEs should require their patients to join a forum. DMEs should be ashamed of themselves with how they just don't care once they deliver the cheapest goods possible to us after the insurance pays them the highest price possible. I would like to think that the insrance companies pay them so much to handle all our issues. What a racket!
Hang in there and take care.
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sleepwalker103
- Posts: 13
- Joined: Fri May 27, 2005 2:49 am
Thanks Janelle and Rock & Roll,
I am really glad I found you guys! It is such a relief to find a place to "let my hair down" about being a "hose-head," ha, ha. I'd certainly never heard of that term before I stumbled onto this website. I couldn't agree with you more Rock & Roll!! All of the medical practitioners related to SA should encourage their clients to join a support group. I have been online for ten years, and I ask myself why it never occurred to me to look for an online group like this (?) - DUH... I am going to discuss this with the therapist, and with my doctor when I see them. I don't know if there is anything around here for persons who don't have Internet access, but at least I know there is a great place for us here online.
Janelle, I appreciate the advice about pain therapy. I am already taking pain meds, but they just don't control it very well. I have Fibromyalgia, Osteoarthritis, herniated discs, and more. In 1990 I fell down a flight of stairs and broke my back & neck, so honestly, I feel lucky to be around to feel the pain. Before that, I was in really good shape. But since then, it's been another story. I have been through a zillion MRI's, worn a metal/leather body brace for 15 mos., physical therapy, various injections (injections did NOT work for me). Last year, I was going to a great doc in Austin, and for a while I hoped to get the pain under control. The doc moved on, and I have not found another one around here that wants to treat chronic pain. My primary physician is just handling the refills of the meds, but he doesn't like having the responsibility of making any changes. I have a very high pain threshold, and I refuse to allow pain to dominate me, but I AM looking to improve my situation, if possible. I don't understand why, but 99% of the docs here just tell you to "learn to live with the pain." They are terrified of prescribing "controlled substances." Aspercreme, and other topical treatments do help, and I use a lot of them. I use one called "Stop Pain," that can be sprayed on, and doesn't smell too bad. But, none of them give any lasting relief. Anyway, I just wanted to explain the situation somewhat, not go into a rant about anything.
Before the injury, I had a great career as an HR professional with a Fortune 500 company, but now I am on SS Disability. I am very fortunate to have good insurance coverage at this time. My husband is retired military, and hopefully we will be covered during our lifetimes (knock wood). The major problem is a lack of doctors here where we live to treat the problems.
Compared to some other problems I have, Sleep Apnea seemed like a minor nuisance to me. I adapted very quickly to using the machine, and the gear. After the first week passed, I hardly noticed it was there. Oddly enough, switching to a new mask proved to be a bigger obstacle for me! Funny what will push our panic buttons at times.
Sorry to be so long-winded! I am very happy to say that last night I did get a pretty good night's rest for the first time with the Swift!! Thanks to YOU GUYS. I believe I was making the mistake of pulling the straps too snug, and causing the straps to ride up. I loosened the back straps a LOT compared to how they were, and it stayed put better that way. If I can keep on resting as well as last night, then this will work out fine. My nose is doing okay now with the humidifier, and AYR. Now that I understand about the strap issue, I think I can keep on trucking. I am definitely going to talk to the therapist again, regardless of how well I do. They need to realize that they are NOT giving their clients enough information. I think it is unethical to just dole out the equipment, and leave you to crash and burn. If I had not found this board, I guarantee you that I would be ready to toss the Swift in the dumpster! Many thanks to those of you willing to take the time out to help me, and others. God bless you all! I look forward to being much better informed, and meeting new friends here.
Best regards,
Patricia
I am really glad I found you guys! It is such a relief to find a place to "let my hair down" about being a "hose-head," ha, ha. I'd certainly never heard of that term before I stumbled onto this website. I couldn't agree with you more Rock & Roll!! All of the medical practitioners related to SA should encourage their clients to join a support group. I have been online for ten years, and I ask myself why it never occurred to me to look for an online group like this (?) - DUH... I am going to discuss this with the therapist, and with my doctor when I see them. I don't know if there is anything around here for persons who don't have Internet access, but at least I know there is a great place for us here online.
Janelle, I appreciate the advice about pain therapy. I am already taking pain meds, but they just don't control it very well. I have Fibromyalgia, Osteoarthritis, herniated discs, and more. In 1990 I fell down a flight of stairs and broke my back & neck, so honestly, I feel lucky to be around to feel the pain. Before that, I was in really good shape. But since then, it's been another story. I have been through a zillion MRI's, worn a metal/leather body brace for 15 mos., physical therapy, various injections (injections did NOT work for me). Last year, I was going to a great doc in Austin, and for a while I hoped to get the pain under control. The doc moved on, and I have not found another one around here that wants to treat chronic pain. My primary physician is just handling the refills of the meds, but he doesn't like having the responsibility of making any changes. I have a very high pain threshold, and I refuse to allow pain to dominate me, but I AM looking to improve my situation, if possible. I don't understand why, but 99% of the docs here just tell you to "learn to live with the pain." They are terrified of prescribing "controlled substances." Aspercreme, and other topical treatments do help, and I use a lot of them. I use one called "Stop Pain," that can be sprayed on, and doesn't smell too bad. But, none of them give any lasting relief. Anyway, I just wanted to explain the situation somewhat, not go into a rant about anything.
Before the injury, I had a great career as an HR professional with a Fortune 500 company, but now I am on SS Disability. I am very fortunate to have good insurance coverage at this time. My husband is retired military, and hopefully we will be covered during our lifetimes (knock wood). The major problem is a lack of doctors here where we live to treat the problems.
Compared to some other problems I have, Sleep Apnea seemed like a minor nuisance to me. I adapted very quickly to using the machine, and the gear. After the first week passed, I hardly noticed it was there. Oddly enough, switching to a new mask proved to be a bigger obstacle for me! Funny what will push our panic buttons at times.
Sorry to be so long-winded! I am very happy to say that last night I did get a pretty good night's rest for the first time with the Swift!! Thanks to YOU GUYS. I believe I was making the mistake of pulling the straps too snug, and causing the straps to ride up. I loosened the back straps a LOT compared to how they were, and it stayed put better that way. If I can keep on resting as well as last night, then this will work out fine. My nose is doing okay now with the humidifier, and AYR. Now that I understand about the strap issue, I think I can keep on trucking. I am definitely going to talk to the therapist again, regardless of how well I do. They need to realize that they are NOT giving their clients enough information. I think it is unethical to just dole out the equipment, and leave you to crash and burn. If I had not found this board, I guarantee you that I would be ready to toss the Swift in the dumpster! Many thanks to those of you willing to take the time out to help me, and others. God bless you all! I look forward to being much better informed, and meeting new friends here.
Best regards,
Patricia
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Janelle
PAtricia. If you live in Austin, TEXAS, I have a great doctor for you that has done wonders with me and is a Pain Management Specialist as well as a Spine specialist. His office is located down that little hill on the South side of 290 West, and the First St. exit. nearby the Austin Seton South (St. David's) hospital. His outpatient surgical unit is on James Casey near the hospital. His name is Anand Joshi. He has a friend that comes in once every few weeks who does electromyography to test the nerves to see why they won't respond to the injections, and a host of other tests and treatments. He and his staff are wonderful.
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rock and roll
- Posts: 1222
- Joined: Mon Nov 01, 2004 7:30 pm
- Location: Texas
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sleepwalker103
- Posts: 13
- Joined: Fri May 27, 2005 2:49 am
Thanks Janelle!
I live in the Temple/Belton area, so Austin is about an hour from here. I appreciate the heads up, and I will give Dr. Joshi's office a call next week. I will let you know how it goes! Hopefully, I can get an appt. sometime soon. Gee, isn't it wonderful how things like this happen? A problem with my new mask might lead me to help with other serious problems, sort of out of the blue! I don't mind travelling to Austin if I can find a good doctor there.
Patricia
Patricia