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Hi folks, I got a letter from my DME that said they did not make the approved list so ....The people that know me are going to be replaced with ?as of yet I do not know. Anyone else get a similar letter? Good Sleep,Chris

Ps. I am getting new glasses so hopefully I can look at the computer again soon

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I have an auto machine, I believe.  (Remstar Auto A Flex ) but it is not set on auto.  Maybe I should ask my physician when I see her in September if this could be tried??!!??   

Have one mouth device but it did not seem to help.  Maybe I should have tried the more costly (more than $1,000) one.  I will try sending a message to Dr. park.  Thanks for your suggestions.  I had been doing well and right now I am back in th e"I can't stand this" mode.

ZolliStar said:

Ginny,

Two observations: 

    1.  Maybe an APAP will work better for you than a CPAP. Dr. Park recommended that I try an APAP. I did and it has made a difference. He says that some sleep apnea people do much better on one machine as compared to the other. The only way to find out is to try a different machine. I found my APAP on Craig's List. It is one of the about $400 models which was used (according to the seller) for only about four months before a family member gave him a high-end APAP. I paid $180 the machine; I found out that, indeed, I do much better on an APAP.

It's also possible to buy a low-cost APAP at www.secondwindCPAP. com.  I was on the verge of placing an order when I saw the listing on Craig's.

    2.  Consider a mandibular advancement device (MAD).  These things draw the jaw forward so that your tongue doesn't fall back.  I'm being fitted for a MAD. Dr. Park says that for some (assuming they qualify for such devices) the device works just fine: no machine needed. For others, both the device and a machine is needed. (I'd sure love to be a device-only person!)  It's also possible that a device won't work at all....

Finally, I have a FFM. It didn't seem to allow for the right pressure BUT at the time that I used it it was with my CPAP which has a set pressure. I'm going to try it sometime with the APAP: its pressure varies "as needed" (I believe) and thus should work better with a FFM.  I'll see....

Final thought: Where do you live?  Possible you can get a referral from Dr. Park to a doctor in your area who has the kind of knowledge and understanding that he has.  I have some kind of malformation (back of throat, tongue, mouth, etc.) that results in a lot of my problems, according to Dr. Park.  (BTW, if I had been breastfed as an infant, this probably would not have happened. This is another it's-not-nice-to-fool-Mother-Nature examples.)

I hope this helps.



Ginny Edmundson said:

Boy, you hit the nail on the head!   For a good while one mask seems fine and then suddenly I have complaints with it.  I have never had a FFM that would fit me.  My face is small and I would be awake every 1-2 hours adjusting it.  Even with the chin strap or cervical collar there are times my tongue must "fall back" and blck my airway causing me to suddenly wake up.  Does not happen every night.  The chin strap cause me severe neck discomfort and sometimes the collar does too.   So I loosen and then it is not as effective in doing what it is supposed to do.  I don't think there is a good answer.  I wish I could somehow go to NY and see Dr. Park or go somewhere to get another opinion.  I don't really WANT surgery but I can't see me doing this for the remaining years I live.  It does depress me at times. Thanks for listening.  OH, when I did try a FFM even during th ebrief hours it did not leak I would still have my mouth open and my husband would wake me up saying I was making all kinds of noises! So I think even with the FFM my tongue would fall back.  Guess I need a head transplant.  LOL

Mary Z said:

Yeah Ginny.  I am a mouth breather by habit and with the FFM  I don't need the chin strap.  Isn't it funny how a mask will work for a awhile and then all of a sudden doesn't work?  My chin strap failed last night- just wouldn't stay around my head.

I'll let you know how the Quattro air works out.

Ginny, I had problems when I used the AUTO function on my machine.  I would have hypopneas and the pressure would increase, but instead of treating the hypopneas the higher pressure would cause more hypopneas.  This may be unusual and may not happen to you.  Some people do find the AUTO more comfortable as it delivers the lowest pressure needed (as set by you, the doc/tech).  It is a good option to have on your machine in any case and I would certainly ask the Doc about using it on your next visit.

 

I ordered the new Quattro Air.  I feel like a young, fit 25 year old buying running shoes-

always buying the latest and best running shoe.  LOL.  It should be here tomorrow.

Whatever problems  I was having the other night with my Wisp- terrible leakage- resolved with better use of the chin strap.  I'm looking forward to the new mask so I don't have to wear the chin strap for a while.  It doesn't bother me, I'm just tired of dealing with it and want a short break. 

 

I've never tried a dental appliance- was yours fitted by a dentist, Ginny?

Well actually, I did buy a relatively expensive "boil and bite" over the counter appliance, but could not stand to have it in my mouth.  I have a small mouth and would have to be fitted by the dentist. 

Yes, mine was fitted by a Dentist.  it was $500-600.  Used it for several days and did no help at all. I have a small mouth too and it didn't feel that great in my mouth.   I had spoken to another dentist and he does the expensive version.  But I hated to pay more and maybe have the same result.  I remember now, early on while using CPAP that my sleep doc had tried the auto for me on my machine and I did have more Hypopneas.  
Let me know how the new mask does.   In my mind I would still have the problem with my tongue falling back even with a FF mask.  I don't mouth breath but if I do not have cervical neck brace or chin strap my tongue closes off airway and mouth puffs open.  Wish I could "velcro" my tongue!
Mary Z said:

Ginny, I had problems when I used the AUTO function on my machine.  I would have hypopneas and the pressure would increase, but instead of treating the hypopneas the higher pressure would cause more hypopneas.  This may be unusual and may not happen to you.  Some people do find the AUTO more comfortable as it delivers the lowest pressure needed (as set by you, the doc/tech).  It is a good option to have on your machine in any case and I would certainly ask the Doc about using it on your next visit.

 

I ordered the new Quattro Air.  I feel like a young, fit 25 year old buying running shoes-

always buying the latest and best running shoe.  LOL.  It should be here tomorrow.

Whatever problems  I was having the other night with my Wisp- terrible leakage- resolved with better use of the chin strap.  I'm looking forward to the new mask so I don't have to wear the chin strap for a while.  It doesn't bother me, I'm just tired of dealing with it and want a short break. 

 

I've never tried a dental appliance- was yours fitted by a dentist, Ginny?

Well actually, I did buy a relatively expensive "boil and bite" over the counter appliance, but could not stand to have it in my mouth.  I have a small mouth and would have to be fitted by the dentist. 

Hi Mary, Their is a list of approved suppliers whom I can choose from. I guess I will be googling them cause their a mistery to me. Good Sleep,Chris

Mary Z said:

Chris, well I hope a great DME winds the bid.  My dme is a local  supply house so I hope they are not affected.

I have noticed since upping my fish oil and the temperature rising the mask seems to not seal as well. Washing both mask and face help some. Good Sleep,Chris

 
Ginny Edmundson said:

Boy, you hit the nail on the head!   For a good while one mask seems fine and then suddenly I have complaints with it.  I have never had a FFM that would fit me.  My face is small and I would be awake every 1-2 hours adjusting it.  Even with the chin strap or cervical collar there are times my tongue must "fall back" and blck my airway causing me to suddenly wake up.  Does not happen every night.  The chin strap cause me severe neck discomfort and sometimes the collar does too.   So I loosen and then it is not as effective in doing what it is supposed to do.  I don't think there is a good answer.  I wish I could somehow go to NY and see Dr. Park or go somewhere to get another opinion.  I don't really WANT surgery but I can't see me doing this for the remaining years I live.  It does depress me at times. Thanks for listening.  OH, when I did try a FFM even during th ebrief hours it did not leak I would still have my mouth open and my husband would wake me up saying I was making all kinds of noises! So I think even with the FFM my tongue would fall back.  Guess I need a head transplant.  LOL

Mary Z said:

Yeah Ginny.  I am a mouth breather by habit and with the FFM  I don't need the chin strap.  Isn't it funny how a mask will work for a awhile and then all of a sudden doesn't work?  My chin strap failed last night- just wouldn't stay around my head.

I'll let you know how the Quattro air works out.

Hi Zollistar, APAPs have really improved may be something to look in to . Depending on my adherance to good sleep hygene and such I know that my readings change. It was pointed out at my last sleep study that when they boosted pressure I had more arrousals ...so they suggested positional therapy and closer attention to food exercise and hydration because in my case more was not better. Good Sleep,Chris   
 
ZolliStar said:

Ginny,

Two observations: 

    1.  Maybe an APAP will work better for you than a CPAP. Dr. Park recommended that I try an APAP. I did and it has made a difference. He says that some sleep apnea people do much better on one machine as compared to the other. The only way to find out is to try a different machine. I found my APAP on Craig's List. It is one of the about $400 models which was used (according to the seller) for only about four months before a family member gave him a high-end APAP. I paid $180 the machine; I found out that, indeed, I do much better on an APAP.

It's also possible to buy a low-cost APAP at www.secondwindCPAP. com.  I was on the verge of placing an order when I saw the listing on Craig's.

    2.  Consider a mandibular advancement device (MAD).  These things draw the jaw forward so that your tongue doesn't fall back.  I'm being fitted for a MAD. Dr. Park says that for some (assuming they qualify for such devices) the device works just fine: no machine needed. For others, both the device and a machine is needed. (I'd sure love to be a device-only person!)  It's also possible that a device won't work at all....

Finally, I have a FFM. It didn't seem to allow for the right pressure BUT at the time that I used it it was with my CPAP which has a set pressure. I'm going to try it sometime with the APAP: its pressure varies "as needed" (I believe) and thus should work better with a FFM.  I'll see....

Final thought: Where do you live?  Possible you can get a referral from Dr. Park to a doctor in your area who has the kind of knowledge and understanding that he has.  I have some kind of malformation (back of throat, tongue, mouth, etc.) that results in a lot of my problems, according to Dr. Park.  (BTW, if I had been breastfed as an infant, this probably would not have happened. This is another it's-not-nice-to-fool-Mother-Nature examples.)

I hope this helps.



Ginny Edmundson said:

Boy, you hit the nail on the head!   For a good while one mask seems fine and then suddenly I have complaints with it.  I have never had a FFM that would fit me.  My face is small and I would be awake every 1-2 hours adjusting it.  Even with the chin strap or cervical collar there are times my tongue must "fall back" and blck my airway causing me to suddenly wake up.  Does not happen every night.  The chin strap cause me severe neck discomfort and sometimes the collar does too.   So I loosen and then it is not as effective in doing what it is supposed to do.  I don't think there is a good answer.  I wish I could somehow go to NY and see Dr. Park or go somewhere to get another opinion.  I don't really WANT surgery but I can't see me doing this for the remaining years I live.  It does depress me at times. Thanks for listening.  OH, when I did try a FFM even during th ebrief hours it did not leak I would still have my mouth open and my husband would wake me up saying I was making all kinds of noises! So I think even with the FFM my tongue would fall back.  Guess I need a head transplant.  LOL

Mary Z said:

Yeah Ginny.  I am a mouth breather by habit and with the FFM  I don't need the chin strap.  Isn't it funny how a mask will work for a awhile and then all of a sudden doesn't work?  My chin strap failed last night- just wouldn't stay around my head.

I'll let you know how the Quattro air works out.

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