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newly diagnosed
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orel Offline

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Post: #1
newly diagnosed
Thought I would make a thread just on my personal situation, maybe I can get some pointers on how to deal with my new situation. I've recently turned 20 years old and I'm morbidly obese. 5'10, 298 pounds. I've been this overweight all my life and I've never really had any problems. Few months ago I went to see a cardiologist because I was feeling very weak in the chest when I fell asleep. That's the best way I can describe it. The cardiologist ran a few tests and everything came back clean. That weakness eventually faded.

For the last couple months I've been short of breath. It has been increasing and increasing, but two weeks ago it got to the point where it is now. I've have trouble breathing even when I'm not trying to sleep, but at night its the worst. I've been skipping whole nights of sleep because of it. As a result my mind has been fogged and my frustration is peaking. Sometimes my chest hurts, with sharp pains. I've also been feeling light headed, and have been having trouble swallowing with dry mouth.

I went in for my yearly checkup and told my doctor. She told me that I probably had sleep apnea and sent me away for a sleep study, chest x-ray, and bloodwork. I had the sleep study two days ago. It was a long night. For the first two hours I couldn't sleep at all. My breathing just wouldn't let me. Then I went through some light sleeping interrupted by long breaks where I willed myself to fall into a deep sleep (NOTE: I was currently going on 36 hours without ANY sleep when I went for the sleep study). The light sleeping equaled two hours total. Finally I fell into a deep sleep, but by that time the technician came and woke me up. He let me sleep an hour after he was supposed to wake me since it was my first real sleep that I did. He told me that I slept a total of less than three hours. He said he wasn't sure what information they could get from that. Next day a receptionist called me. She told me I had moderate sleep apnea, with 21 episodes an hour (also blood oxygen reached a low of 77%). She also said I had involuntary leg movements. She said that they wanted another sleep study with a CPAP. I'm going in tomorrow to do that. I'm kinda worried that my lack of sleep gave them inaccurate information. I have a followup with my doctor in another week with the sleep studies, bloodwork, and x-ray results.

I'm been really miserable the last few weeks. I'm hoping this CPAP thing will help improve my quality of life. Any tips, information, or support would be appreciated. Maybe questions that I need to bring up with my doctor, or the sleep clinic, things I need to tell them. Another thread is saying that I NEED to get an APAP with data collecting. I'm not sure what my insurance will cover. I just don't want to make any mistakes now that will negatively affect me longterm. Thanks guys.
08-24-2012 05:54 PM
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dakota Offline

Members

Posts: 14
Joined: Aug 2012

Machine: None
Mask Type: Not using mask
Mask Make & Model:
Humidifier: None
CPAP Pressure: None
CPAP Software: Not using software

Other Comments: I am a registered sleep technologist

Sex: Male
Location: Ann Arbor, MI

Post: #2
RE: newly diagnosed
Hey Orel, I hope I can help you with this. In our lab, we need 2 hours minimum. If they found 22 events an hour (AHI of 22), they definitely found some apnea. Even if you had HALF as many, an AHI (in our lab) of 10 or more would get you an appointment for CPAP. In some cases, people who are really sleep deprived and can tolerate the CPAP, can do much better the night of the CPAP study. My advice to you, is look at many mask options including pillows, nasal masks and full face masks. The sleep lab should give you ALL these options. If/When you get on CPAP and you are struggling with it, talk to your doctor and let them know about changing to BiPAP or an APAP. Discuss having a PAP NAP (a study in which you come in during the day and they try masks on you extensively then let you nap with it) with your doctor if you continue to struggle. Here are some masks I have tried in the past that have worked well for many of my patients:

Swift FX (PILLOWS)
Swift LT (PILLOWS)
Zest (NASAL)
Activa LT (NASAL)
Micro Mirage (NASAL)
Ultra Mirage II (NASAL)
Mirage Quattro (FULL FACE)
Quattro FX (FULL FACE)
ComfortGel Full (FULL FACE)
FitLife (ENTIRE FACE)
08-24-2012 06:19 PM
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zonk Offline

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Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #3
RE: newly diagnosed
(08-24-2012 05:54 PM)orel Wrote:  I'm hoping this CPAP thing will help improve my quality of life. Any tips, information, or support would be appreciated. Maybe questions that I need to bring up with my doctor, or the sleep clinic, things I need to tell them. Another thread is saying that I NEED to get an APAP with data collecting. I'm not sure what my insurance will cover. I just don't want to make any mistakes now that will negatively affect me longterm. Thanks guys.
As I understand it any machine CPAP or APAP are billed by the same billing code (E0601) and paid just the same by the insurance. So its a matter for you to find DME on the insurance list who is willing to gives you what you need, some DME are not any better than used car salesman.
You have to ask the doc to specify the type of machine on the prescription for example: Data capable machine, S9 AutoSet (auto range 8-12), humidifier, climate line, mask of choice and DISPENSE AS WRITTEN.
For the therapy to work effectively you need to find the right mask which can take several trials to find the right one and its quite possible it could be the first mask that you've tried. Find out about the 30 days return mask trials from your DME so you can return the mask within the 30 days period and try another. Its easy said than done but you should consider seriously about loosing weight...Good luck and welcome to the board.
08-24-2012 06:36 PM
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mjbearit Offline

Preferred Members-2

Posts: 605
Joined: May 2012

Machine: REMstar Auto AFlex DS550
Mask Type: Nasal pillows
Mask Make & Model: RESMed Swift FX
Humidifier: Heated humidifier - 2
CPAP Pressure: 12.5-20
CPAP Software: SleepyHead EncoreBasic

Other Comments:

Sex: Male
Location: So Cal

Post: #4
RE: newly diagnosed
Hi Orel Welcome
Been there, done that. So has everyone here and the good news....we all lived through it! Smile I know it is daunting! I I hardly slept at all during mine either, most are that way. Now that I have a bit of time on the machine, I think I could probably sleep with just about anything on! ha! When I fist got my CPAP it was what we call a brick. That brick lasted me for many years and saw me though my extremely compliant and extremely uncompliant stages! My insurance would not spring for anything new unless the brick broke. While it was a consideration to run it over with the car, I do have a moral streak and could not bring myself to do that. Instead I went to a supplier who sells second hand equipment and got what I wanted at a low price. It is not the end-all if you don't get a data capable APAP, but data capable would sure be a plus! If you let your doctor know up front that you would like to participate in your treatment and would like a data capable machine, you might just get your wish! It certainly couldn't hurt to talk to him about an APAP either because they can be set to run the same as a CPAP and if, down the road you needed an APAP, well, you would already have it.
As far as masks goes, I have used nasal pillows for a long time back to when they more closely resembled something from a medieval dungeon than a medical instrument. The new pillows are just great! Light-weight, not cumbersome, I just love them. There are others here who hate them just as much! LOL! This is one of the most personal things you will ever have to choose! I wish you luck and please come back and let us know how things went!
Mike

As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
08-24-2012 06:49 PM
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trish6hundred Offline

Advisory Members

Posts: 6,436
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #5
RE: newly diagnosed
Hi orel, First of all, WELCOME! to the forum.! It would be better if you got a data-capable machine. I wish you luck with your next sleep study. One thing I will tell you is that CPAP therapy can take lots of TIME and Patience so hang in there. Just keep checking back into the forum as there will be lots of help from very caring people.

trish6hundred
08-24-2012 06:50 PM
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PaulaO2 Offline
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Moderators

Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #6
RE: newly diagnosed
(08-24-2012 05:54 PM)orel Wrote:  Thought I would make a thread just on my personal situation, maybe I can get some pointers on how to deal with my new situation. I've recently turned 20 years old and I'm morbidly obese. 5'10, 298 pounds. I've been this overweight all my life and I've never really had any problems. Few months ago I went to see a cardiologist because I was feeling very weak in the chest when I fell asleep. That's the best way I can describe it. The cardiologist ran a few tests and everything came back clean. That weakness eventually faded.

Personally, I don't consider 5'10 and 298 to be morbidly obese. Overweight, yes. According to the charts, you are about 100lbs overweight for a person of that height. The good news is that you are young. You still have time to re-train your body into knowing what 'normal' weight is. Speak to a Registered Dietician (not a nutritionist) about what foods to eat, calorie count, etc based on your lifestyle.

Quote:I went in for my yearly checkup and told my doctor. She told me that I probably had sleep apnea and sent me away for a sleep study, chest x-ray, and bloodwork. I had the sleep study two days ago. It was a long night. For the first two hours I couldn't sleep at all. My breathing just wouldn't let me. Then I went through some light sleeping interrupted by long breaks where I willed myself to fall into a deep sleep (NOTE: I was currently going on 36 hours without ANY sleep when I went for the sleep study). The light sleeping equaled two hours total. Finally I fell into a deep sleep, but by that time the technician came and woke me up. He let me sleep an hour after he was supposed to wake me since it was my first real sleep that I did. He told me that I slept a total of less than three hours. He said he wasn't sure what information they could get from that. Next day a receptionist called me. She told me I had moderate sleep apnea, with 21 episodes an hour (also blood oxygen reached a low of 77%). She also said I had involuntary leg movements. She said that they wanted another sleep study with a CPAP. I'm going in tomorrow to do that. I'm kinda worried that my lack of sleep gave them inaccurate information. I have a followup with my doctor in another week with the sleep studies, bloodwork, and x-ray results.

Call your doc first thing in the morning and request something to help you sleep. Something mild enough to de-stress but not so heavy you don't have an accurate test. If you cannot get enough sleep still, ask to be able to rent an APAP for two weeks or more. This will enable you to basically self-titrate (which is what they call it when they figure out what pressure you need). Even if you do get the sleep you need and feel the results were good enough, I suggest you still push to get an APAP. Especially if you plan on losing that weight. As you lose weight, your pressure needs will probably change. An APAP (and watching the data) will adjust it for you.

The leg twitches were probably what they call Periodic Limb Movement Disorder (PLMD). What it is is your brain is shouting "Wake the heck up!!" and is causing you to jerk. PLMD is very common with those of us with sleep apnea. (The day time leg jerking is called Restless Leg Syndrome (RLS). But that is caused by other things.)

Quote:I'm been really miserable the last few weeks. I'm hoping this CPAP thing will help improve my quality of life. Any tips, information, or support would be appreciated. Maybe questions that I need to bring up with my doctor, or the sleep clinic, things I need to tell them. Another thread is saying that I NEED to get an APAP with data collecting. I'm not sure what my insurance will cover. I just don't want to make any mistakes now that will negatively affect me longterm. Thanks guys.

If you really want to lose that weight and you think you can, then that alone is enough reason to push for an APAP. Because it can be set to a range of pressure vs a single number, it can adjust as you go along.

As for what to ask for, and because we are nosey and like to know stuff Bigwink :
- First, ask for a copy of the sleep report. Don't let them talk you out of it saying you won't know what you are reading. You want that report for your own records.
- What was the AHI for both nights
- How many of that count were apnea events and how many were hypopnea (shallow breathing) events
- How long was the longest event
- What was the average length of the events
- Were there any central apnea events or all obstructive
- How did the O2 do with the CPAP during the test. If it did not go high enough (over 95 is best), do you need supplemental oxygen at night. Probably not but it is something to ask.
- Also ask about the dietician. The doc may have someone in house or could refer you. The trick to dieting, in my opinion, is to not diet. But to change habits and to understand portion control (which is my biggest problem). Studies say it takes 27 (or was it 22?) days to establish a habit. (NPR rocks) You've had 20 yrs worth of habits that may need to be changed. And trust me, it ain't easy. But the slower you lose the weight, the slower it will come back if you 'slide'. And you will. Like I said, it ain't easy but it is possible.

I look forward to hearing more from you! Welcome to ApneaBoard!

Welcome

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-24-2012 08:22 PM
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mysticaldreamz Offline

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Posts: 10
Joined: Aug 2012

Machine: Resmed S9 Autoset
Mask Type: Full face mask
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Humidifier: H5i
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CPAP Software: SleepyHead

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Sex: Female
Location: New Hampshire

Post: #7
RE: newly diagnosed
Welcome!! I am a newbie too.
08-24-2012 08:47 PM
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orel Offline

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Posts: 6
Joined: Aug 2012

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CPAP Software: Not using software

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Sex: Male
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Post: #8
RE: newly diagnosed
Thanks for the welcomes and the advice guys, keep it coming. About the weight loss, yeah, I think this whole not breathing thing has finally given me some motivation. So far all the consequences of my weight have been social, but having a taste of the physical consequences is a huge wake up call.

Question:
So everyone is in agreement that an APAP is better than a CPAP? From my understanding the difference between the two is that the CPAP pushes consistent air pressure and an APAP give automatically adjusts it, CPAP being default. Will insurance cover an APAP, or will it only provide a basic CPAP machine?
08-24-2012 10:31 PM
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dakota Offline

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Posts: 14
Joined: Aug 2012

Machine: None
Mask Type: Not using mask
Mask Make & Model:
Humidifier: None
CPAP Pressure: None
CPAP Software: Not using software

Other Comments: I am a registered sleep technologist

Sex: Male
Location: Ann Arbor, MI

Post: #9
RE: newly diagnosed
From my experience, insurances tend to be more picky about covering BiPAP. As a technician, I have to prove that a patient is intolerant to CPAP before I can even use BiPAP. CPAP is just continuous pressure. Sometimes a flex can be added to it, called a C-Flex which can make it more tolerable. APAP automatically adjusts as needed. So lets say you need a much lower pressure on your side, the APAP will remain low, but if you go to your back, it will adjust as necessary. From a clinical standpoint, I prefer CPAP more than APAP, especially if the CPAP pressure is 10 and under. However, if APAP is what someone needs to use the machine and get the therapy they need, I am all for it.
08-24-2012 10:40 PM
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PaulaO2 Offline
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Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #10
RE: newly diagnosed
To clarify, a BiPAP is the Respironics brand name for Bilevel PAP (BPAP). BPAP is where the inhale pressure is different from the exhale pressure. On regular machines, the exhale relief is up to is 3cm or less but for BPAP, it can be higher (up to 7?). They tend to be more expensive so you'd have to justify having one. They are used a lot by folks who have chronic lung conditions or who just cannot tolerate breathing against the pressure.

An APAP / AutoPAP is an Automatic PAP. The range is set anywhere from a low of 4 to a high of 20. Most folks have the lower number a few points lower than they'd need if on straight CPAP and the higher number a few points over. An example would be if your titration says you need 11, range would be a low of 8 and a high of 15. They are only slightly more expensive that CPAP. Nearly all US insurance companies pay the same amount whether it be CPAP or APAP so, of course, most DME's will give you CPAP because they make more profit.

Alphabet soup makes the world spin.
http://www.apneaboard.com/wiki/index.php?title=Acronyms

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-25-2012 12:24 AM
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