Replies to This Discussion

Permalink Reply by Chris H on August 16, 2011 at 3:29pm

Hi Carolyn, Your sleep deprived, oxygen starved mind is playing a mean trick on you. You  would not find fault with someone wearing a prosthetic limb would you? how about glasses or using a cain? By going to A.W.A .K.E meetings and utilising this forum you will improve your quality of llife and most likely extend it too. Is it easy at first... no ,but is it doable? Yes.Anybody that has a problem with you using a medically necessary device needs to reevaluate their thinking and is most likely not someone whom is good to associate with. Good Sleep,Chris 

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Permalink Reply by MZH on August 16, 2011 at 3:47pm

My husband is the one who figured out I have apnea. He told me I needed a sleep study. Boy, was he right. He didn't run away.

If you're looking for a long-term relationship, use the CPAP b/c she'll find out soon enough that you need one. Any woman worth her salt who cares about you would not be turned off by a CPAP machine; she'd want you to live longer. I can't believe your female friends would say that to you unless they don't understand the ramifications of you maybe having a stroke or heart attack while you're off the machine. Egad!

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Permalink Reply by Ginny Edmundson on August 16, 2011 at 3:48pm

Guess I could have my tongue surgically removed~  :)   Seriously, would some type of appliance pssibly keep my tongue in the correct position so as to not block my airway?

Jay Polatnick said:

Just remember Ginny, there are several ways to 'skin a cat'.   I'm wholeheartedly for 'whatever works' and question any cookie-cutter 'CPAP is the Gold standard' approach.  Leave no stone unturned.   To my knowledge, many of the most promising studies on CPAP efficiency is with nasal CPAP masks.   Become your own doctor and arm yourself with a arnsenal of knowledge and questions for your healthcare professional.  My dentist uses the metaphor of the Cage (your mouth size) is too small for the Tiger (your tongue).  Ultimately, Sleep Apnea is a case of underdeveloped mandibular and maxillofacial structures.   Of course, I'm no 'expert'.
Ginny Edmundson said:

I feel depressed also.  I can and have adjusted to the "blowing air" but just can not find a mask that fits.  It is such a long process & I don't really see any light at the end of the tunnel.  Still trying and I have been 100% compliant in use.  A good night here and there and then some horrible nights (like last night.  I dread going to bed every night and happy when early AM comes. I just try to keep on going!  Good luck and hope you have supportive doctor etc.

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Permalink Reply by Jay Polatnick on August 16, 2011 at 4:03pm

Ginny,

 

          I cannot say for sure, but please Google 'Full Breathe Solution'.  It's an oral appliance designed for that.   I've had some success with it, but it seems to work best for mild to low-moderate Sleep Apnea.

 

Jay

Ginny Edmundson said:

Guess I could have my tongue surgically removed~  :)   Seriously, would some type of appliance pssibly keep my tongue in the correct position so as to not block my airway?

Jay Polatnick said:

Just remember Ginny, there are several ways to 'skin a cat'.   I'm wholeheartedly for 'whatever works' and question any cookie-cutter 'CPAP is the Gold standard' approach.  Leave no stone unturned.   To my knowledge, many of the most promising studies on CPAP efficiency is with nasal CPAP masks.   Become your own doctor and arm yourself with a arnsenal of knowledge and questions for your healthcare professional.  My dentist uses the metaphor of the Cage (your mouth size) is too small for the Tiger (your tongue).  Ultimately, Sleep Apnea is a case of underdeveloped mandibular and maxillofacial structures.   Of course, I'm no 'expert'.
Ginny Edmundson said:

I feel depressed also.  I can and have adjusted to the "blowing air" but just can not find a mask that fits.  It is such a long process & I don't really see any light at the end of the tunnel.  Still trying and I have been 100% compliant in use.  A good night here and there and then some horrible nights (like last night.  I dread going to bed every night and happy when early AM comes. I just try to keep on going!  Good luck and hope you have supportive doctor etc.

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Permalink Reply by Ginny Edmundson on August 16, 2011 at 4:06pm

Will check it out.  Wondered if something like this was used with CPAP if the CPAP would work better. Kind of hard to comprehend something "in my mouth" while I already have my nose & mouth covered by hard plastic.  Geez...it's so much fun!

Jay Polatnick said:

Ginny,

 

          I cannot say for sure, but please Google 'Full Breathe Solution'.  It's an oral appliance designed for that.   I've had some success with it, but it seems to work best for mild to low-moderate Sleep Apnea.

 

Jay

Ginny Edmundson said:

Guess I could have my tongue surgically removed~  :)   Seriously, would some type of appliance pssibly keep my tongue in the correct position so as to not block my airway?

Jay Polatnick said:

Just remember Ginny, there are several ways to 'skin a cat'.   I'm wholeheartedly for 'whatever works' and question any cookie-cutter 'CPAP is the Gold standard' approach.  Leave no stone unturned.   To my knowledge, many of the most promising studies on CPAP efficiency is with nasal CPAP masks.   Become your own doctor and arm yourself with a arnsenal of knowledge and questions for your healthcare professional.  My dentist uses the metaphor of the Cage (your mouth size) is too small for the Tiger (your tongue).  Ultimately, Sleep Apnea is a case of underdeveloped mandibular and maxillofacial structures.   Of course, I'm no 'expert'.
Ginny Edmundson said:

I feel depressed also.  I can and have adjusted to the "blowing air" but just can not find a mask that fits.  It is such a long process & I don't really see any light at the end of the tunnel.  Still trying and I have been 100% compliant in use.  A good night here and there and then some horrible nights (like last night.  I dread going to bed every night and happy when early AM comes. I just try to keep on going!  Good luck and hope you have supportive doctor etc.

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Permalink Reply by Mike on August 16, 2011 at 4:19pm

They just said not to tell my medical conditions to someone I don't know.  Most people want someone who is healthy and it's not their business. 

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Permalink Reply by MZH on August 16, 2011 at 5:10pm

Oops, I guess I must be in the wrong thread.

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Permalink Reply by Katherine Kato on August 16, 2011 at 9:35pm

Hi!

 

What an interesting OP... I never considered "OMG, I'm going to have to sleep with a mask strapped to my face every night for the rest of my life!"  I know that people get discouraged about their diagnosis, but for me that was never a problem... I have had depression for as long as I've had undiagnosed OSA and I am also |this close| to full blown Type 2 diabetes, so I can understand where those emotions come from.

 

I was so tired every day for years and years (we're talking from when I was a teenaged school girl until this past December) and begged to be tested for OSA, but nobody would send me (they gave various excuses ranging from I'm just lazy and need more exercise to lose some weight or don't spend so much time reading late into the night) and I was just so overjoyed when SOMEONE (myc urrent GP) finally listened to me and sent me to an ENT doc, who in turn did some basic testing (scoped my nose & throat and did an overnight O2 monitoring) and gave me a moderately severe OSA diagnosis and prescribed a CPAP machine... the diagnosis meant that as long as I use the CPAP every night, I won't end up killing myself (and possibly others) driving in to w*rk every afternoon because I was so very drowsy when I get into my car. 

 

I would drive up to the carpark at w*rk and ask myself "How in the hell did I get here in one piece?!" (my commute is during the height of the afternoon rush along a route that is on a busy corridor and involved crossing a bridge and most afternoons I wouldn't have much memory of the drive in).

 

I am by no means 100% compliant with use (sometimes I'm just too tired to put it on and sometimes I will wake up in the morning and find that I've removed the mask some time during the night), and I figure that the time I spend sleeping with it on every night is a lot less inconvenient than playing Russian Roulette with my car every day, and given that my extended health benefits covered the initial costs of the machine (i.e. machine and 1 mask), it's a lot cheaper than running the risk of having to possibly pay repair bills and increased insurance premiums because I've hit something with my car.  The machine I have (ResMed S9 Autoset) is whisper quiet (I went on a trip with Mum last week and she said that she couldn't hear the machine and for the first time, she couldn't hear me snoring in the night) and it packs down to the size of a laptop bag (I took it on a trip to Toronto this past spring and it was easy peasy).

 

I hope that you will at least give the machine a try for a month or two... you will feel better for it... better sleep, feeling more refreshed etc etc etc... you can't know the increased quality of life that comes with CPAP use!

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Permalink Reply by Warren A Noblick on August 16, 2011 at 9:49pm

Sharon, I cannot believe that a RTT you would sugarcoat the truth. Yes for a person new to CPAP it can be very depressing. Because not only do I have apnea I also have clinical depression. After my first polysomnograph in July 2008, I was told that the gold standard for treatment of sleep apnea CPAP, would completely change my life. Well it did but not the way my sleep Dr and his technician told me. This is July 2011 I have compliant for 3200 hours. What I didn't find out until three years later at 65% of all CPAP patients who are compliant with still have hypersomnia during the day. In the only answer that they have for you is to take three kinds of stimulants. Pro-vigil, Nuvigil and amantadine. In short I was lied too. Apnea is lifelong, you will never ever get off of CPAP. For one thing not only is equipment for treating sleep apnea four times overpriced, equipment is not designed with the recommendations of apnea patients. All of the five mask that I've tried I've had to modify to prevent leaks. Extra Velcro straps and since chinstrap do not work for nasal pillows masks I have to tape my mouth shut with medical tape. I have used the Fischer and Pakel Sleep Stye, the original Resmed Swift nasal pillows, the Resmed liberty mirage, the Resmed Quatro full face mask and now I am using a new Resmed FX nasal pillows. I doubt seriously if you sleep technicians strap on a mask and try to sleep with it all night. And another thing standard CPAP without any privations to lower the pressure when you exhale should be done away with. Nobody gets used to them. The air pressure resistance when you're trying to exhale it's like balloon all night. Your lungs burn the next day from the exertion. Trying to breathing against your full inhalation pressure.

If you have sleep apnea you better have a lot of money. I am lucky that I have good insurance. My Resmed elite II with EPR and humidifier costs $3800. But the cost do not and there.

My masks have cost between $200-$400, $72 for a mask seals, $65 per CPAP hose's and $16 for little piece of polyethylene fluff that they called filters. And last but not least $100 for the headgear to hold the mask on my face. I have some advice for all of you that are new to CPAP. You're going to encounter some problems in your therapy that sleep Dr. never told you about. You better have a heated humidifier because with out it both of your nostrils will become blocked during the first 10 minutes to put the mask on. And they are several problem of rainout. Rainout used when the humidity in your CPAP is condense this back in to the water and flood that your mask with water. I can assure you that when you start snorting that water you'll be pulling your mask off in our hurry.

After three years of improvisation with my equipment I found out how to be the above mentioned problems. There is another piece of equipment you're going to have to buy to make your therapy tolerable. One you need to buy a good room humidifier. Humidifiers on the CPAPs do not do the job alone. You will also need a Heppa filter, to prepare your nostrils for CPAP therapy I have a few tips for you. You're going to have to moisten your sinuses as much as possible before you put the mask on. The best way that I have found is to use the Netti pot. If you have any kind of nasal congestion issues sinus rinsing is a esential. The pot looks like a little teakettle. You have to use salt packets that come with it to balance the pH of the water. You let the water flow into one nostril and let it run out the other. There are also nasal moisturizing gels that you can use. Here are a few tips to prevent rainout. They have covers that you can put on your CPAP does to insulate it from the temperature of the room. The solution that I found that worked the best was to buy an electric blanket. CPAP hose is normally come in 6 foot links. All of the extra hose that you are not using place that folded under the electric blanket.

I wish that someone would've told me about the solutions to make therapy tolerable. But let me add, never give up. If you've been diagnosed with sleep apnea you're going to have to you adapted version of CPAP. If after all the things that I've just told you do not work. There is always the option for a dental appliance. Checking your area for dentist that practice sleep medicine. They can make you a device that you put in your mouth before you go to bed. This device has to be specifically fitted to you. They are not cheap either. They can cost anywhere from $1000-$3000. They work by moving your lower jaw forward.

Now that you've heard the truth from another sleep apnea patient don't let your sleep Dr. there technician give you a snow job.

Well enough of the gloom and doom. You will adapt to it. If you ever expect to have a normal life again you're going to have to be compliant.

Sharon Beatrice Gray said:

Hi Carolyn,

 

Being diagnosed with OSA does not mean you have to wear this mask and machine the rest of your life. Weight loss and healthier eating along with exercise can eliminate the need for the machine. If worn properly and consistently with a good fit, the CPAP machine will have you feeling great all day evvery day. It does take getting used to, so please give it a chance and get excited about feeling better and having more energy to get a 15 min walk in or take the stairs.

 

Good luck,

Sharon Gray, RRT RCP

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Permalink Reply by Jay Polatnick on August 16, 2011 at 9:58pm

Warren,

 

         I cannot dispute your personal experience and I'm sure you've been through alot, but one person's experience doesn't translate to everyone's.   Sleep Apnea is not a death sentence.  In fact, I think I've gained greater understanding why I experienced certain things in in life like I did.  I see it more as a 'journey', albeit a difficult one, but with vigiliance, discipline and a thirst for knowledge, improvement is very possible.

Best Regards

Warren A Noblick said:

Sharon, I cannot believe that a RTT you would sugarcoat the truth. Yes for a person new to CPAP it can be very depressing. Because not only do I have apnea I also have clinical depression. After my first polysomnograph in July 2008, I was told that the gold standard for treatment of sleep apnea CPAP, would completely change my life. Well it did but not the way my sleep Dr and his technician told me. This is July 2011 I have compliant for 3200 hours. What I didn't find out until three years later at 65% of all CPAP patients who are compliant with still have hypersomnia during the day. In the only answer that they have for you is to take three kinds of stimulants. Pro-vigil, Nuvigil and amantadine. In short I was lied too. Apnea is lifelong, you will never ever get off of CPAP. For one thing not only is equipment for treating sleep apnea four times overpriced, equipment is not designed with the recommendations of apnea patients. All of the five mask that I've tried I've had to modify to prevent leaks. Extra Velcro straps and since chinstrap do not work for nasal pillows masks I have to tape my mouth shut with medical tape. I have used the Fischer and Pakel Sleep Stye, the original Resmed Swift nasal pillows, the Resmed liberty mirage, the Resmed Quatro full face mask and now I am using a new Resmed FX nasal pillows. I doubt seriously if you sleep technicians strap on a mask and try to sleep with it all night. And another thing standard CPAP without any privations to lower the pressure when you exhale should be done away with. Nobody gets used to them. The air pressure resistance when you're trying to exhale it's like balloon all night. Your lungs burn the next day from the exertion. Trying to breathing against your full inhalation pressure.

If you have sleep apnea you better have a lot of money. I am lucky that I have good insurance. My Resmed elite II with EPR and humidifier costs $3800. But the cost do not and there.

My masks have cost between $200-$400, $72 for a mask seals, $65 per CPAP hose's and $16 for little piece of polyethylene fluff that they called filters. And last but not least $100 for the headgear to hold the mask on my face. I have some advice for all of you that are new to CPAP. You're going to encounter some problems in your therapy that sleep Dr. never told you about. You better have a heated humidifier because with out it both of your nostrils will become blocked during the first 10 minutes to put the mask on. And they are several problem of rainout. Rainout used when the humidity in your CPAP is condense this back in to the water and flood that your mask with water. I can assure you that when you start snorting that water you'll be pulling your mask off in our hurry.

After three years of improvisation with my equipment I found out how to be the above mentioned problems. There is another piece of equipment you're going to have to buy to make your therapy tolerable. One you need to buy a good room humidifier. Humidifiers on the CPAPs do not do the job alone. You will also need a Heppa filter, to prepare your nostrils for CPAP therapy I have a few tips for you. You're going to have to moisten your sinuses as much as possible before you put the mask on. The best way that I have found is to use the Netti pot. If you have any kind of nasal congestion issues sinus rinsing is a esential. The pot looks like a little teakettle. You have to use salt packets that come with it to balance the pH of the water. You let the water flow into one nostril and let it run out the other. There are also nasal moisturizing gels that you can use. Here are a few tips to prevent rainout. They have covers that you can put on your CPAP does to insulate it from the temperature of the room. The solution that I found that worked the best was to buy an electric blanket. CPAP hose is normally come in 6 foot links. All of the extra hose that you are not using place that folded under the electric blanket.

I wish that someone would've told me about the solutions to make therapy tolerable. But let me add, never give up. If you've been diagnosed with sleep apnea you're going to have to you adapted version of CPAP. If after all the things that I've just told you do not work. There is always the option for a dental appliance. Checking your area for dentist that practice sleep medicine. They can make you a device that you put in your mouth before you go to bed. This device has to be specifically fitted to you. They are not cheap either. They can cost anywhere from $1000-$3000. They work by moving your lower jaw forward.

Now that you've heard the truth from another sleep apnea patient don't let your sleep Dr. there technician give you a snow job.

Well enough of the gloom and doom. You will adapt to it. If you ever expect to have a normal life again you're going to have to be compliant.

Sharon Beatrice Gray said:

Hi Carolyn,

 

Being diagnosed with OSA does not mean you have to wear this mask and machine the rest of your life. Weight loss and healthier eating along with exercise can eliminate the need for the machine. If worn properly and consistently with a good fit, the CPAP machine will have you feeling great all day evvery day. It does take getting used to, so please give it a chance and get excited about feeling better and having more energy to get a 15 min walk in or take the stairs.

 

Good luck,

Sharon Gray, RRT RCP

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Permalink Reply by MaZ the purple princess on August 16, 2011 at 10:07pm

Yep...still feel depressed about it.  I know what you mean, I am continually trying a new mask; each time with extremely high hopes.  I don't want to go into it, but I know what you mean.

MaZ

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Permalink Reply by MZH on August 16, 2011 at 10:08pm

For those who can't exhale against the pressure  - that's me - CPAP, even with exhale relief  (EPR on a Resmed) you need a BiPAP, preferably autotitrating, or maybe something like an APAP.

Masks are always troublesome. I've lost count of how many I tried. But I actually feel weird sleeping w/o a mask now. I had to do it one night. Scared me!

As for cost, one can buy anything online at places like CPAP.com and a few others like them at a deep discount, even machines. All you need is a copy of your prescription from the doc. I've bought hoses for $16, and masks for around $100-130 average. (A DME would charge up to $400 for the same thing. Outrageous when it goes through insurance!) My S9 BiPAP is $2,178 online - nowhere near the cost of the one from a DME, I'm sure.

As for meds to stay awake during the day, methylin happens to work well for me (yes, it's generic Ritalin and quite inexpensive and yes, a sleep doc prescribed it for me. God bless him. The good news is that I hardly ever need it now; it *does* get better.

PS My last sleep tech has severe apnea and is on BiPAP; he gave me some great tips on a few things. My RT also uses a CPAP. I guess I got lucky in the "understanding it" dept. I do wish the sleep docs had apnea; they tend to not have it!

Hang in! I hope the depression lifts some once you feel more rested.

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