3 Miserable Months

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Eff_cpap

3 Miserable Months

Post by Eff_cpap » Wed Nov 15, 2017 10:09 pm

It’s been three miserable long months since I was told I had to get this vile and disgusting machine. I fantasize about shooting it, running it over, and dumping the remnants in a vat of acid. I am having weight loss surgery in a few months and not using it is grounds for my surgeon and insurance to put the kabash on my plans. I have tried not one, not two, not even three but four different masks... various styles, sizes and fits. I have done the “desensitize Darth Vader therapy” I have worn the mask during the day while surfing my phone, watching tv, blah blah blah. I can’t sleep with this thing, what little sleep I get is broken and full of nightmares. It’s uncomfortable, cumbersome, and heavy. I am having nose bleeds, constant running/dry/congested nose. I have changed the humidity settings on my machine, I have experimented with heated humidity to no avail. I have not experienced any positive results from this so called “therapy”. I slept better, felt better, and did much better off of this thing. Most nights if I don’t take my prescribed 100 mg of trazadone I set a timer for four hours with it on, not sleeping and wait till I get to four hours so I can take it off and sleep from 3 or 4 am on for the rest of the night. What am I supposed to feel using this therapy? I don’t think I’m cut out for this, has anyone done tried the implant? Are there ways around using cpap? I don’t know how much more I can take with this machine. I’ve been in constant contact with my repository therapist and doctor. The RT doesn’t know what else to tell me or suggest and my doctor just keeps telling me to wear this thing.

Thanks,

-Going Out Of My Mind

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chunkyfrog
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Re: 3 Miserable Months

Post by chunkyfrog » Wed Nov 15, 2017 10:25 pm

A positive attitude will go a long way toward using cpap successfully.
It sounds like you are still trying to get away from it--4 hours a night is simply NOT ENOUGH.
The implant is limited to only a small set of patients.
You need to contact the implant providers to find out if you are a candidate.

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Re: 3 Miserable Months

Post by Guest » Wed Nov 15, 2017 11:39 pm

Eff_cpap wrote:It’s been three miserable long months since I was told I had to get this vile and disgusting machine. I fantasize about shooting it, running it over, and dumping the remnants in a vat of acid. I am having weight loss surgery in a few months and not using it is grounds for my surgeon and insurance to put the kabash on my plans. I have tried not one, not two, not even three but four different masks... various styles, sizes and fits. I have done the “desensitize Darth Vader therapy” I have worn the mask during the day while surfing my phone, watching tv, blah blah blah. I can’t sleep with this thing, what little sleep I get is broken and full of nightmares. It’s uncomfortable, cumbersome, and heavy. I am having nose bleeds, constant running/dry/congested nose. I have changed the humidity settings on my machine, I have experimented with heated humidity to no avail. I have not experienced any positive results from this so called “therapy”. I slept better, felt better, and did much better off of this thing. Most nights if I don’t take my prescribed 100 mg of trazadone I set a timer for four hours with it on, not sleeping and wait till I get to four hours so I can take it off and sleep from 3 or 4 am on for the rest of the night. What am I supposed to feel using this therapy? I don’t think I’m cut out for this, has anyone done tried the implant? Are there ways around using cpap? I don’t know how much more I can take with this machine. I’ve been in constant contact with my repository therapist and doctor. The RT doesn’t know what else to tell me or suggest and my doctor just keeps telling me to wear this thing.

Thanks,

-Going Out Of My Mind
Well, that's not much information to go on. You haven't told us what equipment you have (machine and mask) or what settings are in your machine (air pressure and humidity settings) .

But, to me, it sounds like you need to take control of your own therapy. Try to become as knowledgeable as you can and as soon as possible. Relying on the "medical mafia" is a sure way of becoming frustrated with this therapy.

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kteague
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Re: 3 Miserable Months

Post by kteague » Thu Nov 16, 2017 1:22 am

Sounds like you are indeed miserable using CPAP, and that you have tried many of the baseline tips that are offered here. It would likely to be futile trying to convince you this is good for you, so I'll just go on the fact you have to do this to meet criteria for surgery. Since you've got to do it, hopefully you can make it the least problematic as possible. Based on all you've tried, your lack of finding CPAP nirvana isn't from lack of effort. I'm wondering how much of your efforts, and the efforts of your provider, have focused on if your machine data confirms that your treatment is indeed working as it should. Have you posted data here yet to have it evaluated? That's the first thing I'd want to know. My first 5 months of treatment were hellish as my settings were not what they needed to be and my machine did not report treatment data. Once they were optimized, things began to turn around. Can you tell us more details about what specific issues you are having with your masks? If it seems to be fitting issues, there are videos with fitting tips on youtube for many masks. The more imformation you give us, the more likely you can get targeted suggestions.

One last question - was there any mention in your sleep studies (in a lab?) of limb movements or has anyone told you your legs move a lot at night? Just a long shot question, as it's not unusual for a person who has both obstructive sleep apnea and periodic limb movements of sleep to experience an increase in restlessness after treating the sleep apnea. Doesn't hurt to rule out long shots to help focus on identifying tru issues. Good luck with things. It shouldn't have to be this hard. Hopefully that can still be turned around.

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49er
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Re: 3 Miserable Months

Post by 49er » Thu Nov 16, 2017 3:34 am

Eff_cpap wrote:It’s been three miserable long months since I was told I had to get this vile and disgusting machine. I fantasize about shooting it, running it over, and dumping the remnants in a vat of acid. I am having weight loss surgery in a few months and not using it is grounds for my surgeon and insurance to put the kabash on my plans. I have tried not one, not two, not even three but four different masks... various styles, sizes and fits. I have done the “desensitize Darth Vader therapy” I have worn the mask during the day while surfing my phone, watching tv, blah blah blah. I can’t sleep with this thing, what little sleep I get is broken and full of nightmares. It’s uncomfortable, cumbersome, and heavy. I am having nose bleeds, constant running/dry/congested nose. I have changed the humidity settings on my machine, I have experimented with heated humidity to no avail. I have not experienced any positive results from this so called “therapy”. I slept better, felt better, and did much better off of this thing. Most nights if I don’t take my prescribed 100 mg of trazadone I set a timer for four hours with it on, not sleeping and wait till I get to four hours so I can take it off and sleep from 3 or 4 am on for the rest of the night. What am I supposed to feel using this therapy? I don’t think I’m cut out for this, has anyone done tried the implant? Are there ways around using cpap? I don’t know how much more I can take with this machine. I’ve been in constant contact with my repository therapist and doctor. The RT doesn’t know what else to tell me or suggest and my doctor just keeps telling me to wear this thing.

Thanks,

-Going Out Of My Mind
I have nothing to add to Kteague's excellent advice except to say that if you are interested in the Inspire Procedure, which I think is what you are referring to, they require that you use the cpap machine for a minimum of six months. And I am not sure what they're weight requirements are as I tried searching on their website and didn't see anything.

I am sorry you are struggling so much and hope you can resolve your issues.

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MaxINTJ
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Re: 3 Miserable Months

Post by MaxINTJ » Thu Nov 16, 2017 7:25 am

FIrstly, I have had a bit more than that amount of time with no success on CPAP.

I interpret the situation as the OP is significantly overweight or obese and the doctors attribute the OP's OSA to that condition. Of course the insurance company wants to see CPAP work so they don't have to pay for surgery.

My personal opinion on weight loss surgery is that it should be considered the same as cosmetic surgery - a personal choice - and not covered by insurance. There is no reason for someone to become obese other than consuming more calories than they're expending - hence it's a choice to get in that condition. Likewise, reducing caloric intake and increasing physical activity will cause weight loss without surgery.
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Diagnosis of crappy sleep, desats under 80, maybe UARS

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AMESS
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Re: 3 Miserable Months

Post by AMESS » Thu Nov 16, 2017 7:28 am

I too am plugging away to stay with cpap. Try every mask in the system if you have to. Surgery is no option when there is cpap available. Seek the help of your professional. If you are not getting results with the current doc--get a new one now .
Last edited by AMESS on Thu Nov 16, 2017 8:31 am, edited 1 time in total.

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AMK
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Re: 3 Miserable Months

Post by AMK » Thu Nov 16, 2017 8:24 am

Eff_cpap, many of us end up trying even more than four masks. Four is actually a pretty low number. If you could tell us your machine and what masks you have tried, it would be a start.

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MaxINTJ
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Re: 3 Miserable Months

Post by MaxINTJ » Thu Nov 16, 2017 8:30 am

AMESS wrote:I am plugging away to stay with cpap. Try every mask in the system if you have to. Surgery is no option when there is cpap available. Seek the help of your professional. If you dont have one--get one.
For some of us every mask in the system is TWO masks.

1) The Dreamwear nasal mask with the top mounted hose.

2) Everything else that has a front mounted hose.

I have tried every mask there is.

Just sayin'...
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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49er
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Re: 3 Miserable Months

Post by 49er » Thu Nov 16, 2017 8:54 am

MaxINTJ wrote:FIrstly, I have had a bit more than that amount of time with no success on CPAP.

I interpret the situation as the OP is significantly overweight or obese and the doctors attribute the OP's OSA to that condition. Of course the insurance company wants to see CPAP work so they don't have to pay for surgery.

My personal opinion on weight loss surgery is that it should be considered the same as cosmetic surgery - a personal choice - and not covered by insurance. There is no reason for someone to become obese other than consuming more calories than they're expending - hence it's a choice to get in that condition. Likewise, reducing caloric intake and increasing physical activity will cause weight loss without surgery.
HI Max,

There are two issues with the first one being whether insurance companies should cover weight loss surgeries. I will punt on that one.

But I disagree vehemently that gaining weight is a personal choice for everyone who ends up in that condition. Several years ago, after being put on Prozac (an alleged weight neutral drug), 30 pounds appeared without my changing my diet or exercise routine. I was scared to death that the weight gain wouldn't stop.

Of course, I am sure everyone's question is why I didn't get off it. Unfortunately, I was too spellbound realize that is what needed to happen.
Finally, when I cold turkeyed it and switched to St. Johns Wort, the pounds came off effortlessly without my doing a thing.

Many people have had similar type experiences to me and not just with psych meds. So I am definitely not an anomaly.

Sorry, I got this thread off track. I wish the OP all the luck in the world.

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AMESS
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Re: 3 Miserable Months

Post by AMESS » Thu Nov 16, 2017 9:00 am

Just sayin' Max-two masks is not all there is. Try another brand. Know u like the hose on top--but if you dont try-you wont know. Nothing to loose here.

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MaxINTJ
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Re: 3 Miserable Months

Post by MaxINTJ » Thu Nov 16, 2017 9:38 am

49er wrote: HI Max,

There are two issues with the first one being whether insurance companies should cover weight loss surgeries. I will punt on that one.

But I disagree vehemently that gaining weight is a personal choice for everyone who ends up in that condition. Several years ago, after being put on Prozac (an alleged weight neutral drug), 30 pounds appeared without my changing my diet or exercise routine. I was scared to death that the weight gain wouldn't stop.
All of a sudden when I was in my thirties, I started gaining weight suddenly - was just a metabolism change. BUT, I only had to adjust my caloric intake. Same thing happened in my fifties - I noticed my metabolism changed again.

Yes, certain medications can do the same thing, but they cannot create fat from zero calories. If you are always burning more calories than you're eating, you will lose weight - that is a scientific fact.

I so often hear the argument that "I only eat as much as so and so and we work out the same amount, but they're thin and I'm fat, so it must just be something I can't change." That's BS. Maybe that person needs to eat less and work out more than so and so.

That argument is like getting good grades in school. "I studied just as much as the smartest kid in class but they got an A and I failed." Well, maybe that kid needs to study a LOT more than the smartest kid to even get a C. Not everybody is the same in any way.

So yeah, it does come down to a choice. If I hadn't paid attention and changed my behavior, I would weigh 100lbs more than I do today. You continued the same level of eating and the same level of physical activity even though things had changed. Had you eaten less and worked out more, I bet you could have reduced or eliminated the weight gain.

So, why should I pay more for health insurance to help pay for "cosmetic" surgery? I would like to have the option of cosmetic surgery as well. If it isn't available for all, I don't think it should be available to anyone - under insurance.
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

nicholasjh1
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Re: 3 Miserable Months

Post by nicholasjh1 » Thu Nov 16, 2017 4:23 pm

Eff_cpap wrote:It’s been three miserable long months since I was told I had to get this vile and disgusting machine. I fantasize about shooting it, running it over, and dumping the remnants in a vat of acid. I am having weight loss surgery in a few months and not using it is grounds for my surgeon and insurance to put the kabash on my plans. I have tried not one, not two, not even three but four different masks... various styles, sizes and fits. I have done the “desensitize Darth Vader therapy” I have worn the mask during the day while surfing my phone, watching tv, blah blah blah. I can’t sleep with this thing, what little sleep I get is broken and full of nightmares. It’s uncomfortable, cumbersome, and heavy. I am having nose bleeds, constant running/dry/congested nose. I have changed the humidity settings on my machine, I have experimented with heated humidity to no avail. I have not experienced any positive results from this so called “therapy”. I slept better, felt better, and did much better off of this thing. Most nights if I don’t take my prescribed 100 mg of trazadone I set a timer for four hours with it on, not sleeping and wait till I get to four hours so I can take it off and sleep from 3 or 4 am on for the rest of the night. What am I supposed to feel using this therapy? I don’t think I’m cut out for this, has anyone done tried the implant? Are there ways around using cpap? I don’t know how much more I can take with this machine. I’ve been in constant contact with my repository therapist and doctor. The RT doesn’t know what else to tell me or suggest and my doctor just keeps telling me to wear this thing.

Thanks,

-Going Out Of My Mind
One thing to note is that your pre apnea sleep may have been broken and full of nightmares... some people just don't remember due to the oxygen deprevation. the black out makes non-treated apnea sleep seem easier to some. it seemed that way for me, but the way I felt in the morning told a different story (way better with CPAP). but I'm also a pretty copacetic guy so Regardless of mask related wake ups I don't get mad at the mask itself... that's just going to lead me down a bad road... however I have tried about 8 different masks.
Instead of Sleep apnea it should be called "Sleep deprivation, starving of oxygen, being poisoned by high CO2 levels, damaging the body and brain while it's supposed to be healing so that you constantly get worse and can never get healthy Apnea"

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AMK
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Re: 3 Miserable Months

Post by AMK » Thu Nov 16, 2017 9:23 pm

MaxINTJ wrote:
49er wrote: HI Max,

There are two issues with the first one being whether insurance companies should cover weight loss surgeries. I will punt on that one.

But I disagree vehemently that gaining weight is a personal choice for everyone who ends up in that condition. Several years ago, after being put on Prozac (an alleged weight neutral drug), 30 pounds appeared without my changing my diet or exercise routine. I was scared to death that the weight gain wouldn't stop.
All of a sudden when I was in my thirties, I started gaining weight suddenly - was just a metabolism change. BUT, I only had to adjust my caloric intake. Same thing happened in my fifties - I noticed my metabolism changed again.

Yes, certain medications can do the same thing, but they cannot create fat from zero calories. If you are always burning more calories than you're eating, you will lose weight - that is a scientific fact.

I so often hear the argument that "I only eat as much as so and so and we work out the same amount, but they're thin and I'm fat, so it must just be something I can't change." That's BS. Maybe that person needs to eat less and work out more than so and so.

That argument is like getting good grades in school. "I studied just as much as the smartest kid in class but they got an A and I failed." Well, maybe that kid needs to study a LOT more than the smartest kid to even get a C. Not everybody is the same in any way.

So yeah, it does come down to a choice. If I hadn't paid attention and changed my behavior, I would weigh 100lbs more than I do today. You continued the same level of eating and the same level of physical activity even though things had changed. Had you eaten less and worked out more, I bet you could have reduced or eliminated the weight gain.

So, why should I pay more for health insurance to help pay for "cosmetic" surgery? I would like to have the option of cosmetic surgery as well. If it isn't available for all, I don't think it should be available to anyone - under insurance.
The OP has not asked for weight loss advice or judgement. You are making it more likely that they will not return to this thread. People have a wide variety of reasons for being whatever weight they are, and I don't believe all the data is in yet regarding such variables as epigenetics. You simply and absolutely do not know why the OP is overweight and all this grandstanding about calories serves no purpose here.

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Re: 3 Miserable Months

Post by Arlene1963 » Fri Nov 17, 2017 4:20 am

AMK wrote: The OP has not asked for weight loss advice or judgement. You are making it more likely that they will not return to this thread. People have a wide variety of reasons for being whatever weight they are, and I don't believe all the data is in yet regarding such variables as epigenetics. You simply and absolutely do not know why the OP is overweight and all this grandstanding about calories serves no purpose here.
+1