Any others with Sleep Apnea?

LightChucker

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I have been using a CPAP machine for almost 5 years now. It has been working well to control my sleep apnea, but it sure is a nuisance to use. I have tried many different masks and nasal pillow combinations. I have made my own modifications by making homemade chin straps, cheek pads, tube insulators, etc.

For those that don't know anything about sleep apnea or CPAP; "sleep apnea" is where the patient stops breathing during normal sleep because of an airway constriction. In my case, I stopped breathing 20 times an hour for 30 seconds at a time. (I don't remember the exact numbers, but this is close.) "CPAP" stands for "Continuous Positive Airway Pressure". Usually, you don't even know you have apnea, because you don't wake up enough to have memory of the events. In fact, you can die and never know why. (Ryms don't it?) /ubbthreads/images/graemlins/smile.gif I was lucky in that I actually woke up gasping for breath during an apnea attack. So, I went to a doctor, who sent me to a sleep specialist, who prescribed a sleep study, who finally prescribed CPAP. It saved my life!

Most people are not as lucky as I was, in that they are never aware of the apnea. The affects on your body can lead to death from other things such as high blood pressure, heart attacks, falling asleep at the wheel of your car, and more.

Anyway, are there any others out there who have been diagnosed with sleep apnea? /ubbthreads/images/graemlins/confused.gif

Chuck
 

KevinL

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They took a look at me more than a decade ago and mentioned something like that happening, but not serious enough to prescribe me anything. That was just before I got my tonsils removed, they suggested it could be a cure. I didn't think of it as a major issue and didn't follow up on it because I had other bigger things on my plate. I wonder if it ever went away.. I don't wake up, but like you said, that's why I might not know.
 

wasabe64

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I've been on a CPAP since 1999, my stoppages were in the 90's per hour when they performed the sleep study.

The only reason that I had the sleep study done was at my wife's 9 months of relentless prompting. OSA was virtually unheard of in 1999, and I certainly did not know about it at the time.

They say that it is normal to have such stoppages up to 6 times per hour wihtout affecting your sleep, but anything above the 6 times per hour is OSA that must be treated. In my case, there is a lot of scar tissue in my throat from repeated throat infections that caused the OSA. I am told that surgery is an option, but I've been more comfortable using the CPAP.

I have a heart condition that was made worse by untreated OSA, and there were times when I did black out behind the wheel on long drives.

I preach about going in for a sleep study to anyone who complains about long stretches of exhaustion, a spouse who oberves a breathing stoppage, or very bad snoring. Since undergoing treatment in 1999, three of my friends have also been diagnosed with OSA.
 

LightChucker

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sigp6: How do you know the OSA went away? Did you have another sleep study, or maybe an oxymeter test at home while sleeping?

KevinL: They have come a long way since then. My understanding is that they didn't even have a non-surgical treatment (CPAP) back then.

From what I have read on sleep-related user groups, the surgery options are mostly unsuccessful, because there is no way for them to know exactly where the airway is collapsing. You go through all that pain and suffering and sometimes you end up being even worse than before the surgery. Too risky for me.

My biggest problem is that the mask or nasal pillows will leak one way or the other: One way is that they will leak around the seal; the other way is that the air pressure escapes through my mouth. I have experimented with different modifications to resolve these problems, and for the most part (not 100%) I have found some solutions.

Chuck
 

cobb

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You must not have something right, I do not recall anyone having problems with comfort with the machine. I do know they basically crank it up till you cant stand it or it stops being effective then turn it back down. Maybe you need a new sleep study to get that readjusted?
 

LightChucker

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[ QUOTE ]
cobb said:
You must not have something right, I do not recall anyone having problems with comfort with the machine. I do know they basically crank it up till you cant stand it or it stops being effective then turn it back down. Maybe you need a new sleep study to get that readjusted?

[/ QUOTE ]

cobb,

I guess our life-paths have been very different. If you spent any time reading the various sleep groups, the problem of mask or pillow discomfort is more common than not. But then, maybe your reading has taught you otherwise.

But then, maybe you meant this in a humorous way, because I don't wear the "machine" - I wear the mask, and that is what is causing the discomfort. /ubbthreads/images/graemlins/grin.gif /ubbthreads/images/graemlins/grin.gif That is also why those of us who suffer from this discomfort have spent a fortune buying and trying different masks.

If you are not having any problems - that is great! I am very happy for you. Could you tell us which combination of machine and mask you are using? Maybe it will help one of us who are not so fortunate. /ubbthreads/images/graemlins/help.gif

Thanks,

Chuck
 

LifeNRA

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I suffered from Sleep Apnea. After I got married my wife would tell me that I would stop breathing during the night and she would have to shake me to get me started again. I would feel so tired everyday like I had not gotten much sleep at all. Finally several years ago I had a sleep study done where I would sleep in the hospital for a night so they could monitor me. They said my apnea was very serious especially since I have a heart condition and recommended removing my uvula ( the little thing that hangs down in the back of your throat). They said it was too long and falling into my throat at night therefore cutting off my breathing.
They removed it and for a week I could not even drink water without it killing me. I mean severe throat pain. Felt like someone exploded a stick of dynamite in my throat. I think I lost 15 pounds that week. But it solved the problem and I sleep so much better now. It also stopped my snoring so my wife sleeps better now too. /ubbthreads/images/graemlins/smile.gif
 

tvodrd

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I have a friend with the condition, but otherwise have to plead ignorance. The engineer side (in medical product R&D) of me wonders if a sensor taped to the chest might offer better comfort than a mask? Please forgive me if that was a stupid question.

Larry
 

bigmikey

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I have had it. I went into do one of those stupid sleep tests where they hook you up to all these wires. One of the most uncomfortable experiences I have had. When I finally did get to sleep which was only 4 hours worth, they said I stopped breathing 96 times. Thats a scary thing. So I had decided to have the surgery for it where they took out my tonsils and something else in the back of my throat. I forgot the name. Anyway Before I had the surgery I snored pretty bad. Now no snoring at all /ubbthreads/images/graemlins/smile.gif. I am happy about that, and I dont stop breating anymore.
 

this_is_nascar

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OK, now you guys have scared the sh** out of me. A few times a year I wake up from a sleep gasping for air. It's almost like I was either choking or had no air in my lungs. In addition, EVERY SINGLE DAY, I wake up and feel like I've had no sleep whatsoever. This has been going on for quite awhile now. I usually fall asleep by 11pm and wake at 5am, but I'd swear I had no sleep at all.
 

LifeNRA

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[ QUOTE ]
LightChucker said:
LifeNRA,

That is GREAT! So, you are not on CPAP at all?

Chuck

[/ QUOTE ]
Chuck,
No I am not on CPAP at all. Removing the uvula solved my problem.
Sorry about getting back to the thread so late. My wife is sick.
Jeff
 

LifeNRA

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[ QUOTE ]
this_is_nascar said:
OK, now you guys have scared the sh** out of me. A few times a year I wake up from a sleep gasping for air. It's almost like I was either choking or had no air in my lungs. In addition, EVERY SINGLE DAY, I wake up and feel like I've had no sleep whatsoever. This has been going on for quite awhile now. I usually fall asleep by 11pm and wake at 5am, but I'd swear I had no sleep at all.

[/ QUOTE ]
Best to have it checked out. Sounds like me until I had my surgery. They told me that even my heart would stop beating. My Doctor showed me the chart from my test. Also said that it can kill you. My Doctors exact words were "One day you may not wake up."
BigMikey is right about all the wires they hook up to you and it is nearly impossible to fall asleep during the test. They finally had to give me a sleeping pill.
 

Icebreak

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This subject is kind of personal to post about but knowledge of this technology can be so helpful I feel obligated to join in.

I'm no expert but I'm learning to use a BiPAP. A BiPAP has a lower pressure for exhalation and a higher pressure for inhalation. The "prescription" is programmed levels of air pressure determined during a sleep study. For some folks it is easy to use CPAP/BiPAP machines. For others there are varying degrees of difficulty. Some give up. I think I lean toward being somewhat challenged.

T_I_N -

The description you gave is classic. Sleep apnea is more common than most people think. It can cause medical problems in many areas. I toughed out lack of sleep for years before I did something about it. Though I've still not completely mastered my machine, I'm convinced it is an incredibly effective treatment. Just the feeling of being fully refreshed in the mornings following successful use is motivation enough to continue the treatment. With a Primary Care Physician's recommendation for a sleep study; your insurance will likely pay for the majority of the cost. Study, machine, scheduled consumables, everything.

wasabe64 -

I preach it too. So far, brother-in-law, two co-workers and a friend have done the study and are on a machine. They are all now preaching CPAP.

tvodrd -

The unit can detect pressure differences so if the mask comes off or is taken off an alarm will sound. I've set mine to "no alarm" because an experienced respiratory therapist told me the alarm just irritates people that rip the mask off in the middle of the night.

Chuck –

I'm glad you brought this up. I'll bet some members have sleep apnea and don't know it. They could benefit greatly from a discussion about CPAP machines.

If you could post a few links to your favorite user groups I would appreciate it. I don't know why it never occurred to me that there would be forums specific to their use.

The BiPAP I use is the Respironics BiPAP Duet LX. Very quiet.

Duet LX
622175.jpg


The mask I'm using now is very nice.
ResMed Ultra Mirage

mirage_ultra.jpg


One-handed adjustment on the forehead piece. One-handed release tabs on the harness. The triangular mask is a normal flexible piece surrounded and preceded to the face by a thinner, very conforming piece. Much less pressure is required to make it functional and so, it is very comfortable. Yes, it can leak but it is superior to the other masks I've tried.

I'm still working on getting the system to work for me 100% of the time but I'm close.

- Jeff
 

LightChucker

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Icebreak (Jeff): Great post! I am happy that you are a desciple as well. Finding the route-cause of a whole bunch of medical problems that can save your life as well as treatment that does not include any medications or surgery is very rare. The first thing you want to do is share it with anyone who will listen.

Here are the addresses I lurk in (and sometimes contribute to):

Yahoo! groups:

http://health.groups.yahoo.com/group/cpapusers/

Usenet groups:
alt.support.sleep-disorder

Equipment Vendors:
My favorite is:
The CPAP Store

I have found that alot people do not know about Usenet groups. I get to it using my Outlook Express. I can almost guarantee that if you can think of a subject, there is a Usenet group devoted to it. However, be warned that this contains both the good side and the "dark" side. Ask your ISP about getting connected (that's how I access it), or find one of the Internet interfaces that act as a go-between by reading the Usenet and presenting it in the familiar browser format. I don't do it that way, so I can't help you there. In fact, I stumbled across a new treatment for OSA called "Pillars" that sounds encouraging.

I am glad to see this thread starting to take off. It could save someone's life.

Chuck
 

Icebreak

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Thanks, Chuck.

I ran across this forum when I was looking for that Mirage pic. Here's a link to a discussion in thier "snoring and apnea" board entitled "stories". Looks like a very active and polite group. TalkAboutSleep

I think I'll lurk for while before I join so I can get a grasp of the terminology.

- Jeff
 

LightChucker

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[ QUOTE ]
this_is_nascar said:
OK, now you guys have scared the sh** out of me. A few times a year I wake up from a sleep gasping for air. It's almost like I was either choking or had no air in my lungs. In addition, EVERY SINGLE DAY, I wake up and feel like I've had no sleep whatsoever. This has been going on for quite awhile now. I usually fall asleep by 11pm and wake at 5am, but I'd swear I had no sleep at all.

[/ QUOTE ]

Ray,

You are one of the first "icons" of CPF I got to know. You have one of the best reputations here. /ubbthreads/images/graemlins/smile.gif

Another common symptom of sleep apnea is frequent awakenings. The way it was explained to me is that the kidneys normally shut-down after you reach a certain sleep depth. If you are suffering from something like sleep apnea, which constantly disturbs your sleep, you never reach that deep sleep necessary to "turn off" your kidneys. So, you get woken up frequently all night long.

To all who may be reading this thread, many doctors do not know much about sleep disorders, and may dismiss your complaints of tiredness etc. as merely stress. You must find a sleep doctor. Your doctor may be able to refer you to one. Another source of referrals is the sleep study clinics where they perform the sleep-tests. Sleep clinics are either attached to an existing hospital or they are stand-alone buildings. So, you can find them in the yellow pages.

The CPAP machines (air-pumps) must be prescribed by a doctor, but you can buy your masks and supporting supplies without a prescription. That means, that you cannot just order a machine from the Web; you have to have a prescription.

Please look into it. It's not worth the risk - not to mention how much better you will feel.

Chuck
 
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