Any others with Sleep Apnea?

Saaby

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My dad's on a CPAP. He doesn't particulary enjoy using it. I did some research and found out that although they all serve the same purpose, the CPAP machines themselves are as different as flaslights can be.

I think he needs to try another machine, the one he is on is about the least popular one out there. It's air pressure change intervals are actually large enough that some people wake up all the way instead of having an 'episode'.

He hasn't done anything about trying another machine though, can't say I blame him -- they aren't cheap.
 
E

EchoSierraTwo

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Wow! What a PITA! I use to suffer from it I use to wake up during the night gasping or my wife would elbow me to make me reposition my body to that I would stop snoring, etc. Anyways, to make a long story short. Two years ago I was EXTEMELY Obese. I was 310 LBS. My Ideal weight should be 155 LBS. for my hieght, etc. I am 5'4". I am now 155 LBS. My nightly sleeps are solid and no waking up constanly gasping fopr air. Oh the elbow shots are gone too. /ubbthreads/images/graemlins/smile.gif
 

LitFuse

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[ QUOTE ]
EchoSierraTwo said:
Two years ago I was EXTEMELY Obese. I was 310 LBS. My Ideal weight should be 155 LBS. for my hieght, etc. I am 5'4". I am now 155 LBS.

[/ QUOTE ]

Wow, good for you ES2! At the risk of steering the thread off course, I'm curious how you managed to lose all that weight.

Peter
 

LightChucker

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[ QUOTE ]
Icebreak said:
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

[/ QUOTE ]

Jeff,

Thanks for the tip on the user group. That looks like a cool idea to use the boil-n-bite mouth guards. In fact, I just got back from the local sporting goods store with mine. The leaking between the teeth and tongue has been a big battle for me. I have used other home-made solutions using pads of cloth stuffed between the chin strap and cheek. For the most part it works, but I see advantages in the boil-n-bite idea.

Thank you very much for the lead on this idea! /ubbthreads/images/graemlins/buttrock.gif

Chuck
 

83Venture

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I have been very tired and sleepy during the day for several years. Switched doctors this week and was describing my medical history (GERD) and mentioned the constant tiredness. He said that Apnea has a well known association with Acid Reflux. I am being scheduled for a study in the next few weeks.

Sounds like the study and treatment both are not pleasant. Might have to suggest removing my uvula as something to consider if the study shows positive.
 
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EchoSierraTwo

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[ QUOTE ]
LitFuse said:
Wow, good for you ES2! At the risk of steering the thread off course, I'm curious how you managed to lose all that weight.

[/ QUOTE ]I dont want to jack it either. In short, I wish I could take 100% credit, I cannot. Gastric bypass is what I had done. Over all it took one year to loose the weight and with proper diet and active lifestyle I have been able to maintain the weight loss. PM me if anyone has any questions and thanks Peter. Sorry LightChucker That thread is yours once more.

Peter

[/ QUOTE ]
 

turbodog

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[ QUOTE ]
sigp6 said:
I lost 40 pounds and my apnea went away.

[/ QUOTE ]

Same here, except for 20 lbs.

Helped snoring also.
 

Icebreak

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ES2 -

You bring new meaning to the phrase; "I'm half the man I used to be."

Congratulations.

Sabby –

If your dad is in his second year with minimal success he can request a new study and a new machine. BiPAP or CFLEX may be subscribed. Or maybe he just needs an adjustment and a new mask. Just call the HMO to find out what percentage is paid. If the bill comes in higher than it should be, call the sleep clinic and let them know they are obligated to honor the agreement they have with the HMO.

Litfuse -

I think weight loss is topical, but as you've pointed out; this is LightChucker's thread so I'll be careful not to veer as well. CPAP is a treatment. Weight loss can be a cure if being overweight is the cause as sigp6, ES2 and turbodog have indicated. I don't advocate being on a machine forever.

83Venture -

Have they indicated that your GERD has caused some scar tissue to form and that is the obstruction?

Let me give you some advice about the sleep study and xxPAP machine: Be stubborn. Go with your instincts. If you think something ain't right, say so. You've already overcome one big obstacle by getting a PCP that recognized you needed a sleep study. That's large.

The next obstacle is having a good study. It's cool. No pain. Some folks have told me two studies is a standard but I just had one. I brought water, crackers, cookies, peanutbutterjelly sandwich, milk, pajama bottoms, boxers, a big T-shirt, house slippers, toiletries and two flashlights. Each person will experience something different. For me the sleep study was unpleasant only in a few areas. The glue they use to stick the electrodes to you isn't nice but I didn't notice until the next day. It can cause some mild irritation. The lady that applied them had gentle fingers.

They may decide to try a CPAP early on. The idea of having a hose/mask hooked up to one's face while lying in a hospital bed can be disconcerting and claustrophobic. It wasn't so much for me because I found the technology to be interesting. I immediately keyed on the infrared light and camera. I kept wanting to shine a flashlight back at them but NO FLASHLIGHTS. Crap! When that blast of air hit me I thought, "This is way too much. It's a Hurricane." But I quickly relaxed and began breathing and found it to be relaxing. Innnnn with the good, ouuuut with the bad.

The mask leaked a couple of times and a tech would come in and adjust it. It dawned on me that they knew exactly when I was dreaming by reading that I was in REM sleep. I wondered for a moment if the cute technician knew what I was dreaming about. A little after 3 a.m. they got the pressure dialed in and gave me a second 5mg Ambien (I had already been prescribed Ambien by my PCP) From 4:00 a.m. to 8:00 a.m. a slept like log.

I was awakened by a very nice R.T. before the alarm went off. I felt like 8 billion dollars! After she peeled off the electrodes, coffee was served and she went over my graphs and explained all the details of the study. I took a quick hot shower then I was given a very nice breakfast. Scrambled eggs, bacon, sausage, biscuit, OJ, milk, pancakes. Mmmmm pancakes.

I felt so good I went on to the Durable Medical Equipment Company to get my BiPAP. Here's another good place to be stubborn. Make sure the Respiratory Therapist programs the pressure just right. If you don't like the mask reject it and try another until you get something that is comfortable. I've heard the Activa and the Breeze are even better than my mirage ultra.

Next, off to the grocery store to get distilled waster for the humidifier. I've since quit using the humidifier. Try hard to be compliant to the treatment until you go back to the Sleep Doctor maybe 15 to 30 days later. Insurance pays for renting the machine. If you haven't made a strong effort to use it the MD has no choice but to record that. They'll know because they'll read the card from your machine. This is when you tell them the pressure wasn't right or the mask didn't work. If you aren't reasonably compliant to the treatment the Insurance Company may elect to not pay for you to own your machine. You want to own your machine.

Yes, I've had some battles with the DME, the techs, the therapists, the nurses, the masks, the MD, the insurance company and my pillows but from what I understand this is normal. I still haven't found the perfect pillow and mask and I'm still not compliant to the treatment all the time but when things go well I feel great. My big breakthrough came when one of the experienced R.T.s told me I just needed a proper adjustment on the machine. From her home she walked me through how to program it over the phone. She also got me the MirageUltra mask. Much, much better. What a life saver.

Things you can look forward too:

Increased energy.

Increased memory and cognitive ability.

Increased Oxygen levels in your blood.

Lowered blood pressure.

Calm.

Loss of weight.

More active immune system.

Clearer skin and eyes, healthier hair...in general a more youthful appearance.

A generally vibrant self.

Increased sexual drive and performance. You are 21 again.

Probably TMI for you but I wish I had known about all this long ago. I would marry the cute technician but GF said no to that.

My apologies for the long post. I just wanted you to know the study and the machine aren't that bad. In fact, I look forward to hooking up now because I know how good it can make me feel.

- Jeff
 

83Venture

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Icebreak

Thanks for all the Info, I printed your post for reference. When my GERD was found I already had Esophageal ulcers that took a couple of years to heal, they may have left some scar tissue. I have noticed my memory has been poor for a while now, was wondering if I was in the early stages of Alzheimer's. May be a lot of things have crept in over time that I have not noticed.
 

LightChucker

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I use the REMstar Pus LX CPAP machine, which is shaped much like the one that Icebreak posted, except that mine is a beige color. I don't think they make my model anymore, so I couldn't find a picture to post.

For a mask, I switch off between the Resmed Activa nasal mask below:
ACTIVA1.JPG

For added comfort, I insert a thick, wide piece of foam between the "forehead pad" (stand-off) of the mask and my forehead.
(exploded view)
actvaprts.JPG


and the Breeze, here:
SLEPGERB.JPG


I also employ a home-made chin strap that my wife, Carol made for me (no picture). It is simply 2 forehead sweat bands that she sewed together using lateral/cross stitches. That is, she tacked the adjoining edges of the bands with a loop of thread and terminated every loop - she did not use a long continuous seem. If she had done that, the elastic effect would have been defeated. She left about 3 inches unsewn that keeps it anchored to my head at night.

I have several other masks that I have tried, but these seem to work best for me (at least for now)(YMMV). Nothing is perfect, so I am always looking for a better idea.

Chuck
 

nerdgineer

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I've used one for about 4 years. While it's mostly paid for by my health insurance, I found that you can buy replacement or backup machines at very low cost on ebay. I got a like new (80 hours) Remstar Plus for I think $120. plus shipping. New ones in the box went for about $300. I think my insurance company paid $2300 for them.

You have to be able to set the appropriate pressure level yourself, which the health supplier typically will not teach you to do. However, the instructions are available on line, for example in the "clinician's manual" at this site
.

This way you won't have wait 2 months for a new machine if yours wears out. Note, you should set it at what the doctor told you to set it at and NOT experiment. I'm told incorrect settings (either too high or too low) will not work well.
 

LightChucker

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Nerd,

Thanks for the link for the instructions. I have already figured out how to gain access to setup mode. The only time I change the pressure is when I change between a mask to the Breeze pillows, and then only slightly. The Breeze is more efficient than the mask, so I don't need as much pressure.

My insurance company finally stopped renting the machine and just bought it. The rent was so high that they would have been better off to buy it outright from the beginning rather than renting it. The prices for this equipment are crazy! Simple little molded plastic items can be priced beyond reason.

I would like to have a spare machine on hand in case mine breaks. I have looked at eBay from time-to-time looking for a used machine, but so far I have not been as lucky as you were - just a timing thing, I guess.

Interesting coincidence: my brother-in-law became a sleep-study technician at about the same time that I was diagnosed. Unfortunately, he works in another city.

Chuck
 

Icebreak

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nerdengineer -

Really good information. I would like to have a backup unit. Some of the accessories cost what you paid for an almost new machine. Very wise move.

I went through all kinds of trouble until a good RT told me how to get into the settings. Thanks for the link.

I hope you don't mind me asking but I wanted to know if your machine has helped you. Do you know any techniques to increase CPAP's effectiveness?

- Jeff
 

Icebreak

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There's another thread going about Reggie White's death. He was a good guy.

I was watching football just now and they reported he died from respiratory failure brought on by sleep apnea. Fox is the only one reporting this so far as I can see, so I wouldn't call it confirmed yet. Got my attention.
 

JohnK

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Durn, can't believe this thread. Docs don't like hearing this history, cause they don't know squat about it.

Have had sleep apenea for about 15 years minimum. HAVE to take a 10:00 nap just to get through the day. Also have GERD.

Some days, I am unable to remember much till I get that nap. Funny how I can sleep beautifully on the couch for a hour, and awake so damn refreshed. Go to sleep INSTANTLY.

Google "Fibromyalgia". A related subject.
 

Icebreak

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JohnK -

Have you considered a sleep study?

I've been learning a little more about this at TalkAboutSleep. Some folks say they take a nap on the couch during the day and get the same results. This doesn't mess up thier night time sleep at all. I sometimes think that the different angle one's head is on a couch helps the airway to remain open. An hour of undisturbed sleep can be very beneficial.
 

Icebreak

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A little more about Reggie White.

Determination is still in preliminary stages. Final determination could take up to three months.

ESPN Go Dot Com

A family spokesman said that Reggie had sarcoidosis. This affects the lungs' ability to hold air. In his preliminary report, the Medical Examiner (ME) stated it is likely that sarcoidosis resulted in "fatal cardiac arrhythmia". Cardiac arrhythmia is an irregular heartbeat.

Reggie also had obstructive sleep apnea (OSA) which could very well have been a major contributing factor. A knowledgeable TAS member posted at TalkAboutSleep saying, "a fatal [cardiac arrhythmia] is one of MANY results from untreated apnea."

In my brief lurking at TalkAboutSleep I see that several members would like to know if Reggie White was being treated for apnea and if he was compliant to the treatment. Some of the members are interested in if the final cause of death will clearly attribute OSA. There is hope that some good may come from this tragedy. If the general public is given an opportunity to clearly understand more about sleep apnea, quality of lives can be improved fantastically and actual lives can be saved.

This is serious stuff. Stubborn self-advocacy can do a world of good.

--------------------------

Jeff
 

lahjik

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First, I want to say thank you. I have been reading on this forum off and on for probably a year or so but never took the plunge to register or post. More recently, I been reading it with a bit more dedication after I started going beyond the flashlight information and found a group of interesting, caring, and wonderful people.

About 2 months ago, I went for a sleep study. My PCP had suggested it about 2 years ago, but I kept finding convenient excuses to put off the study. The study wasn't bad at all...well, the pillow was a bit thin, but that is the worst I can complain about. Oh, and I didn't get breakfast! The study confirmed that I have moderate sleep apnea that the sleep doctor told me really ought to be treated before long term problems develop from it.

What he told me was that, at least in my case and not sure if this is a general statement, the surgery was only about 50% effective. He couldn't recommend it based on those odds. He did recommend weight loss as well (I am 6'3" was hovering around 300lbs). Not at all an excuse, but I know that part of what contributed to a weight gain over the past few years was a very stressful job. I changed jobs and my stress level has declined greatly...hopefully my weight will continue to follow.

Though I hope that will eventually help some, I also know that I need to do something else about the sleep apnea NOW. Upstate NY winters with forced air heat tend to be very dry and I know that has made my condition gradually worsen over the past few weeks. Reading this thread has confirmed for me that I need to seek help not only for this dangerous condition, but also for the harmful side effects on my body, mind, and marriage. Thanks for your personal stories about sleep apnea and CPAP that have taken away some of the apprehension I had about going that route. I will be calling the sleep clinic tomorrow to set up another appointment.

Chris
 
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