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Permalink Reply by Ernestine Webster on July 30, 2011 at 9:44am

last night i did give it another try and things seem to have gone very well, i readjusted the chinstrap so the seam would not go on my ear so that went well then i put the nasal pillows in and cut the air on and it seems to be feeling ok so i went to bed and thought i would lay here and see if i can fall asleep and i was able to fall asleep. and slept well for about 5 hours . did not have any problems with the irritating my nose nor dry mouth . i did take a sleeping pill before i went to bed and sometimes the pill helps me get some sleep and sometimes it does not. i slept unitl 7:30 this morning , that my friend is very good for me.

i am so thankful to have the people on this website to help me through this journey , unless you have gone through this no one knows how this disease affects someone. especially somone like me that does not adjust to changes very well and it takes time for me to get things worked out in their minds and finally say this is the way it is and i have to deal with it. i have lost a brother and a special friends from this disease and a few friends so i know what it can and will do.

thank you very much for helping me . with us holding eachother up with love, support and understanding we can work things out.              

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Permalink Reply by Mary Z on July 30, 2011 at 10:07am

Ernestine, you deserve the credit for sticking to it and trying out new suggestions.  Here's hoping tonight goes as well.

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Permalink Reply by RL on July 30, 2011 at 12:42pm

Hello Ernestine,

If your nose is irritated, you may find help with a little Ayr gel or Roezit cream on the nostrils.  You need to use something that does not contain mineral oil for this.  The Ayr gel  is available at many drug stores, and the RoEzit cream is available on the internet.  This may also help with your seal between the nostrils and the nasal pillows.  Do try other nasal pillow sizes also.  If the small size seems to large, you can request or order the extra small size.  I found this makes the difference for me.  It is often the little things that make the difference between success and frustration.  If you like this mask overall, except the leak issue, it would be worth trying the gel or cream before giving up on it.  Good luck finding what is best for you!

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Permalink Reply by Russ Pagano on July 30, 2011 at 3:01pm

This is a reccommendation to anyone struggling as i did for 2 years trying every masl from full to pillows without any satisfaction in resolving every problem from comfort to leakage to noise just to mention a few that i know you have all had.

I WAS INTRODUCED TO THE C PAP PRO BY MY DR. iT IS A NASEL PILLOW EXTREMELY LIGHTWEIGHT MASK THAT IS HELD IN PLACE BY A DEVISE SIMILAR TO A SPORTS MOUTH GUARD THAT YOU MOULD TO YOUR TEETH. THER ARE NO STRAPS NO LEAKAGE AND A MINIMUM OF AIR NOISE BECAUSE THE EXALE HOLES ARE UNIQULY COVERED WITH A FOAM CUSHION TO QUIET THE AIR FLOW. IT CANNOT MOVE OR SHIFT NO MATTER HOW MUCH YOU TOSS AND TURN BECAUSE IT HAS NO STRAPS AND MOVES WITH YOU DUE TO IT'S UNIQUE ATTACHMENT TO THE MOULDED MOUTHGUARD. IT IS BY FAR THE BEST SLEEP APNEA MASK I HAVE EVER HAD AND I RECCOMEND IT TO EVERYONE. I SLEEP NOW IN TOTAL COMFORT.

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Permalink Reply by Ernestine Webster on July 30, 2011 at 7:28pm

thank you mary, i do need all the encouragement i can get, it can be very trying and sometimes just down right what is the use of keep trying and believe me i have been there but i also know what this disease will do so i really hav eno choice but keep trying each and every night is a challlange for me , we all have to keep doing this and that my friend is what this website is all about , HELPING EACHOTHER !    

Mary Z said:

Ernestine, you deserve the credit for sticking to it and trying out new suggestions.  Here's hoping tonight goes as well.

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Permalink Reply by gm on July 31, 2011 at 11:25am

Mary,

 

Do you have a hook that goes on the head strap?  I do at times have air come out of the nasal pillows and I'm not using the hook that goes on top of the head gear but I can say when route the hose up (like using the head gear hook/strap) I do not get the nasal pillow leak.

 

Just an idea.

Mary Callahan said:

I have the swift FX as well, and from time to time I hear the hissing noise of which you are speaking. I find for me it comes from the nasal pillows not fitting quite right. As soon as I move them around and adjust it, the noise stops. Good luck!

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Permalink Reply by Ernestine Webster on July 31, 2011 at 6:45pm

no i do not have one but saw it on cpap.com  
gm said:

Mary,

 

Do you have a hook that goes on the head strap?  I do at times have air come out of the nasal pillows and I'm not using the hook that goes on top of the head gear but I can say when route the hose up (like using the head gear hook/strap) I do not get the nasal pillow leak.

 

Just an idea.

Mary Callahan said:

I have the swift FX as well, and from time to time I hear the hissing noise of which you are speaking. I find for me it comes from the nasal pillows not fitting quite right. As soon as I move them around and adjust it, the noise stops. Good luck!

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Permalink Reply by gm on July 31, 2011 at 7:56pm

Ernestine,

 

Mine came with the nasal pillow head gear; maybe there is one in the box?  Anyhow my nasal pillows seem to work much better when the cpap hose goes from the nose end to the head gear vs. letting the hose lay to my left side or right side.  You just might hold it above your head to see and if it works better maybe ask your DME.

 

Hope your CPAP is working well with ya.

Ernestine Webster said:,

no i do not have one but saw it on cpap.com  
gm said:

Mary,

 

Do you have a hook that goes on the head strap?  I do at times have air come out of the nasal pillows and I'm not using the hook that goes on top of the head gear but I can say when route the hose up (like using the head gear hook/strap) I do not get the nasal pillow leak.

 

Just an idea.

Mary Callahan said:

I have the swift FX as well, and from time to time I hear the hissing noise of which you are speaking. I find for me it comes from the nasal pillows not fitting quite right. As soon as I move them around and adjust it, the noise stops. Good luck!

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Permalink Reply by Ernestine Webster on August 1, 2011 at 10:35am

Hi Andy, thanks for the encouragement , i am really trying to make this work , i know how serious this is as i have lost my brother from this disease as so a very dear friend of mine about 3 months ago as well as other people i know one of which was only 47 years old at the time of his death. this is not a easy treatment to make work , this nasal pillow mask i think if i could get it to feel more comfortable i would like it better then the full mask . i am getting more air in my throad then the full mask but the chin strap is a challange in itself .i do not take change very well but i know i have to keep going with this . i do have to take something to help me sleep as i cannot fall asleep without something and believe me i have tried, night after night after night laying there for hours trying to fall asleep and finally getting up.

the only difference i can see with using the cpap is i am not having the very heavy feeling in my chest in the morning when i get up and the feeling of me fighting all night long . the quanity of sleep is just not there unless i take something and sometimes the sleep meds work and sometimes they don't. saturday night i did not get but 1/2 hours sleep . i envy anyone that can just lay down and fall asleep , like my husband and my daughter, they can lay down anywhere and before you know it they are gone.  me it takes hours for me to go to sleep and even then on some nights i do not sleep at all.

thanks for letting me vent        

dy said:

Hi Ernestine,

 

Welcome to SleepGuide, and to the thrills of CPAP!

 

I've been using mine for close to two years and, despite the challenges and sometimes frustrations, I actually enjoy using my CPAP.

 

I'm rested, I feel much better and, considering the health problems I'd have without it, it is a relatively minor thing to deal with.

 

I've used four types of masks, so maybe I can help with your question.

 

The "hissing", you're hearing could be from a few places. It's possible to have loose hose or fittings, so I'd first check to make sure everything's connected properly.

Otherwise, you're probably hearing "leaks" from where the pillows contact your nose. If that's the case, you'll need to adjust or move the pillow assembly to make a better fit.

 

The pillows that I use come in different sizes, included with the mask, so if yours does, it might be worth trying a different size.

 

Sometimes you need to balance a few things: positioning the mask, adjusting the straps, and routing the hose. 

 

Also, once you find the "right" adjustments and positions, they may change over time. Mine has been pretty well adjusted for months, but recently it seems to be leaking more than usual.

 

Please don't be discouraged, particularly after only a few nights. This all takes some time to get used to!

 

30 days is usually enough for you to see if you like a particular mask. Don't be shy about changing them, since it might take you two or three tries to find the one you like.

 

In my case, the company I get the equipment from let me keep the ones I didn't like, so in the beginning, I tended not to like them until I tried them all (wink, wink!)

 

So, good luck, and let us know how you're doing!

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Permalink Reply by Maryann on August 1, 2011 at 11:48am

Ernestine,  Have you tried using it without the chin strap?  Mine doesn't have one and you should only need it if you sleep with your mouth open.

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Permalink Reply by Mary Callahan on August 2, 2011 at 11:49am

Ernestine, I feel your pain regarding not sleeping. There were nights I only slept half an hour. I know what you are going thru. I have had insomnia over 45 years. One of the worst things ever. I have worked with all sorts of practitioners over the years to get help. I wish I could give you some pointers, but I know what works for one does not necessarily work for another. As for me what did not work 10 years ago is now working. But it means I have to take pills every night to get some decent sleep. 

 

Do not give up. Try everything and anything you can read about, get your hands on, etc. Leave no stone unturned. Over the last 3 years among other things, I have tried homeopathy under the direction of a classical homeopathist. And I think it has helped a bit. I can now fall asleep (which I had trouble with), but I just don't stay asleep. I take supplements as well as the meds. I take l-tryptophan, melatonin, taurine, inositol and passionflower. However when you try supplements/herbs, it can take awhile before they work. If you have other medical concerns, be sure what you take will not affect your other conditions.

 

Keep at it with your doctor to try different medicines. I tried trazadone, doxepin, gabatril, gabapentin, clonazepam, temazepam, and combinations of all the above. I slept, but kept waking up feeling like a truck ran me over. They really did not work. But they do work for others. Then I tried the one that didn't work 10 years ago, and now it worked for me. 

Again, do not give up. Keep trying it all! Something may work one day. Good luck!

Ernestine Webster said:

Hi Andy, thanks for the encouragement , i am really trying to make this work , i know how serious this is as i have lost my brother from this disease as so a very dear friend of mine about 3 months ago as well as other people i know one of which was only 47 years old at the time of his death. this is not a easy treatment to make work , this nasal pillow mask i think if i could get it to feel more comfortable i would like it better then the full mask . i am getting more air in my throad then the full mask but the chin strap is a challange in itself .i do not take change very well but i know i have to keep going with this . i do have to take something to help me sleep as i cannot fall asleep without something and believe me i have tried, night after night after night laying there for hours trying to fall asleep and finally getting up.

the only difference i can see with using the cpap is i am not having the very heavy feeling in my chest in the morning when i get up and the feeling of me fighting all night long . the quanity of sleep is just not there unless i take something and sometimes the sleep meds work and sometimes they don't. saturday night i did not get but 1/2 hours sleep . i envy anyone that can just lay down and fall asleep , like my husband and my daughter, they can lay down anywhere and before you know it they are gone.  me it takes hours for me to go to sleep and even then on some nights i do not sleep at all.

thanks for letting me vent        

 

 

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Permalink Reply by Jay Polatnick on August 2, 2011 at 12:25pm

Does anyone have experience with a 'DNA Appliance' www.dnaappliance.com ?  Sorry to change the topic, but the underlying structure and size of the mouth and mandible seems to be such a crucial component of sleep apnea.

 

In Health,

 

 

Jay

Mary Callahan said:

Ernestine, I feel your pain regarding not sleeping. There were nights I only slept half an hour. I know what you are going thru. I have had insomnia over 45 years. One of the worst things ever. I have worked with all sorts of practitioners over the years to get help. I wish I could give you some pointers, but I know what works for one does not necessarily work for another. As for me what did not work 10 years ago is now working. But it means I have to take pills every night to get some decent sleep. 

 

Do not give up. Try everything and anything you can read about, get your hands on, etc. Leave no stone unturned. Over the last 3 years among other things, I have tried homeopathy under the direction of a classical homeopathist. And I think it has helped a bit. I can now fall asleep (which I had trouble with), but I just don't stay asleep. I take supplements as well as the meds. I take l-tryptophan, melatonin, taurine, inositol and passionflower. However when you try supplements/herbs, it can take awhile before they work. If you have other medical concerns, be sure what you take will not affect your other conditions.

 

Keep at it with your doctor to try different medicines. I tried trazadone, doxepin, gabatril, gabapentin, clonazepam, temazepam, and combinations of all the above. I slept, but kept waking up feeling like a truck ran me over. They really did not work. But they do work for others. Then I tried the one that didn't work 10 years ago, and now it worked for me. 

Again, do not give up. Keep trying it all! Something may work one day. Good luck!

Ernestine Webster said:

Hi Andy, thanks for the encouragement , i am really trying to make this work , i know how serious this is as i have lost my brother from this disease as so a very dear friend of mine about 3 months ago as well as other people i know one of which was only 47 years old at the time of his death. this is not a easy treatment to make work , this nasal pillow mask i think if i could get it to feel more comfortable i would like it better then the full mask . i am getting more air in my throad then the full mask but the chin strap is a challange in itself .i do not take change very well but i know i have to keep going with this . i do have to take something to help me sleep as i cannot fall asleep without something and believe me i have tried, night after night after night laying there for hours trying to fall asleep and finally getting up.

the only difference i can see with using the cpap is i am not having the very heavy feeling in my chest in the morning when i get up and the feeling of me fighting all night long . the quanity of sleep is just not there unless i take something and sometimes the sleep meds work and sometimes they don't. saturday night i did not get but 1/2 hours sleep . i envy anyone that can just lay down and fall asleep , like my husband and my daughter, they can lay down anywhere and before you know it they are gone.  me it takes hours for me to go to sleep and even then on some nights i do not sleep at all.

thanks for letting me vent        

 

 

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