Kenny's CPAP Thread

[tattooyu]

Hi everyone!

My name is Kenny, and I'm a newbie to the forum. This post will be my thread for updates on my own status. I am a member of another forum for pets where they like to keep everything for that pet in one thread. So, I figured, "Why not do it here?"

First, let me just say I also have panic disorder and IBS. I'm 5' 6", 223 lbs. and have a 17 1/2" neck. I'm prime for apnea! I went for my first sleep study on Friday. Ironically, I got very little sleep.

For the first while, I did not have the mask on and slept pretty well. About three hours into it, Bob--the sleep technician--came in to put on the mask. I don't know what brand mask/machine they had but is was a nasal mask and very comfortable.

However, the moment he put it on, I had a mini panic attack. I also got very shaky, which he said he has seen before. He turned down the pressure, but still, I felt like I was choking. When he asked me to describe it, I said I felt like I couldn't exhale. He said, "I know what that is, I'll be right back." When he came back, he had me put the mask on sitting up to get used to it. It was MUCH better. Not only did he lower the pressure a bit, but he also engaged the C-Flex option.

After a few minutes, and some breathing exercises (thanks to my therapist!), I was ready to try to sleep. I tossed and turned a bit but generally felt quite comfortable. After three more hours, I just couldn't sleep any more--not because I was uncomfortable--I just didn't need any more sleep. I felt quite refreshed despite the fact that he said I didn't really go into deep sleep, and Bob thought that my brain finally got a chance to rest uninterrupted even without the deep sleep.

After I woke up with the CPAP I felt:

• My arms were tingling. Bob thought it could have been from the extra oxygen circulating.
• Slight pain/cramp in one thigh, which I forgot to mention to Bob.
• Shaky and cold, which could have been leftover from the panic attack. The room temp was a comfortable 72°F (22.2°C).

The next day I felt:

• Sore in my chest, upper back, arms and diaphragm. Judging from the Newbie info I read, it was probably from sleep more soundly and NOT moving and also the new breathing method my body was not used to doing.
• Diarrhea the whole weekend. I also have IBS, so this may have been a coincidence.

Barring, all that, I am excited about getting a CPAP, if they determine I need one. I get my results in one or two weeks. If I do need one, I'll make sure to update my profile with my equipment info.

I would like to ask a few questions if I may:

1. My insurance covers 80% of the equipment. In your experience(s), how much choice might I have over machine and mask make/model I get?
2. Will I have to fight to get a machine with a heated humidifer? (I have very sensitive sinuses.)
3. Has anybody had any luck with their CPAP machine allowing them to lose weight, or at least give them more energy in order to exercise more?

Looking forward to better sleep! Sorry this was such a long post!

[SharkBait]

I think the fact that they put you on a CPAP indicates they had seen enough to determine you need one. That's how my therapist explained the procedure to me (said if I never "failed" then they wouldn't put me on CPAP).

Ask your doctor to specify heated humidifier (mine did without asking) and it shouldn't be a problem.

[mdbarthe]

Hi, Kenny,

Welcome to the club! I started using my CPAP a little over a year ago. I was given a Respironics M Series CPAP and my pressure level was set at 13. I had three sleep studies over the past five years and on the first two, they never put a mask on me. The reports alway said I didn't have enough breathing interruptions to qualify. However, on the last study, my apnea was severe. I had gained a good bit of weight and was several years older by that time. They woke me up about halfway through the study, too, to put the mask on me, so you probably need the machine.

I just recently switched to a Resmed S8 Autoset II and I prefer it much more than the Respironics M Series machine. I've always had a humidifier (on both machines) because I am a mouth-breather and require a full face mask. I generally don't need to use the humidifier from May through October, but once it gets colder here in Centrall Illinois, I need it. My doctor made the humidifier a part of my prescription, so there was no problem with the insurance covering the cost.

Since I got my first machine, my employer changed our health insurance company. I lucked out because the old company bought my first machine and the new one just purchased the Resmed. I'm at a 20% co-pay. It's still expensive, but it was worth the switch.

In the past 6 months I have lost 30 lbs. I attribute my energy and motivation to the CPAP therapy. I wake up energetic and rested and feel better about myself. I'm able to diet now and exercise and I sleep much sounder and comfortably. Getting used to the equipment takes time and some dedication, but once you're over the hurdle and you stick with it, it pays off.

Good Luck!

[GuyK]

1. My insurance covers 80% of the equipment. In your experience(s), how much choice might I have over machine and mask make/model I get?
2. Will I have to fight to get a machine with a heated humidifer? (I have very sensitive sinuses.)
3. Has anybody had any luck with their CPAP machine allowing them to lose weight, or at least give them more energy in order to exercise more?

[/color]

Hi Kenny. Welcome. We were all newbies here at one time (although some are more newbie-ish than others!).

1. if you read enough on this forum, you'll learn that it pays to shop for a durable medical equipment (DME) provider. Start with a list from your insurance company. Some sleep doctors will have a preferred one, but that is their preference, not the insurance company's or yours.

2. tell your sleep doctor, and he'll add that to the Rx for your machine. In my case, he automatically adds one for everyone.

3. I'd guess everyone is different on the weight loss and exercise front. I've got gym-time built into my schedule, and go then no matter how I'm feeling (except when I have unavoidable conflicts -- but I do make it a priority to get into the gym). In 4+ months on therapy, I haven't seen any weight loss effect yet. I do, however, feel like I have more energy, and less other issues (such as reflux). It's like waking up after being in a fog after such a long time.

Guy

[nomoore]

A lot of people have high anxiety on the sleep study night. It's not surprising that you had an anxiety attack. Since your panic attack was triggered by the lack of exhale relief you need to make sure to get a CPAP machine with some sort of exhale relief like C-Flex, A-Flex, or EPR. This limits you to 2 manufacturers, Respironics and Resmed.

Most DME suppliers allow you to try a mask before you buy it. If you found the mask you had for the trial to be quite comfortable then you should try your best to find out what it was. It's sometimes really hard to find a mask that fits right, is comfortable, and does not leak. Your insurance should have no effect on your mask choices.

Your DME will almost certainly try to give you the most basic, featureless machine possible because the insurance pays your DME the same amount regardless of what machine they give you (except for a bilevel CPAP which most of us don't need). You want to insist on getting a machine that is fully data-capable. If you can't get your DME to give you a fully-data-capable machine then get your doctor to prescribe one so that your DME has no choice. It would be a plus for you to get an Auto machine that auto-adjusts to the pressure you need (great if you have bad allergies sometimes). Don't settle for anything with "Plus" or "Escape" in the name. It will technically treat you but there's no way for you or your doc to monitor your therapy beyond how good you THINK you're sleeping or getting another expensive sleep study. And if you have had OSA for a while you probably don't have a good reference for what constitutes good sleep.

Since you had a panic attack without the exhale relief I would use that as an excuse to request a Respironics M-Series Auto w/ A-flex because it has 2 different options for exhale relief. It has both A-flex and C-flex and it auto-adjusts so that you only have as much pressure as you need at the time.

Getting a heated humidifier with your machine is pretty standard. You shouldn't have a problem. Just ask your doctor about it.

Yes, sleeping well and getting enough oxygen at night are great for your energy levels. Some people see immediate results to their energy levels. For some it takes a few months before they notice a big difference.

[Georgio]

Before the time comes to pick up your machine, you may want to calculate how much that 20% will cost you. For instance it could really add up for a rental over a long period of time. Some actually find it less expensive just to purchase their own equipment outright from an online source like cpap.com.

Good luck with your therapy.

Georgio

[Pineapple]

Hello Kenny and welcome.

Ask your doctor to give you your prescription so you know what it says. Several here have had it faxed to the DME and the DME has tried not to provide what the doctor prescribed.

Make sure the CPAP you get is fully data capable - the data will be helpful if you run into problems, and it's usually next to impossible to get your insurance to pay for an upgrade in machines. If it says "PLUS" or "ESCAPE" on it refuse it. (Take it from someone that got stuck with a "PLUS" and ended up with therapy problems.)

The sleep tech told me when I started that they would never dream of putting someone with sinus problems on CPAP without a humidifier, if your doctor doesn't have it on the script, ask him to put it on.

Make sure you get a mask your comfortable with. Check which DME's your insurance allows you to use, and shop around. Most have a 30 day guarantee on masks (if it don't work for you trade it in) but verify their return policy. The mask is your "make or break" item in your therapy.

Lastly, remember this is not an immediate gratification therapy. Many of us have taken several weeks to see noticeable progress. Don't get discouraged. If your having problems, ask about it. You will be hard pressed to find a problem no one here has had before.

Good Luck.

[tattooyu]

I am so happy and grateful for all your responses!

I will definitely take all of your advice into account. Would this be the sleep doctor or my primary care physician that would be writing the prescription? I didn't even know you could rent a CPAP machine, I just thought you had to pay for one that you own, which I think might be the way I want to go anyway. I don't mind spending a few hundred dollars on my health.

I'm assuming A-flex is C-Flex with an auto-adjust for pressure?


From what I've gathered so far:

• Refuse any machine with ESCAPE or PLUS in the name.
• Insist on a data-capable machine.
• Request a heated humidifer.
• Request that my doctor include a DME on my prescription.
• Request a machine that auto-adjusts or at least has the C-Flex option due to my panic attack.

I'll call my insurance company to see what DME providers they use in my area. If anyone lives near North Hollywood, CA or in the Los Angeles area, feel free to send me a PM. I would love to talk more about your experiences. I'll search of course, but if anyone knows of any posts on here that specifically explain DMEs and what's involved, I would love to read them.

It's all a bit confusing at first, but I'll figure it out. Thanks again everyone!

[roster]

...........
[*]Will I have to fight to get a machine with a heated humidifer? (I have very sensitive sinuses.)
........

Heated humidifier is quickly becoming standard but ask the doc to specify it on the script.

Also ask the doc to specify "automatic" CPAP on the script. Not necessarily because you need an automatic, but definitely because you need a fully-data-capable machine and the automatics fit this need.

Get a good machine and soon you will want to buy a card reader and software to monitor your therapy. You will need to keep a check on number of apnea, hypopneas and snores; and the amount of mask leak. IMO, this is the only way to get your therapy to work effectively.

Don't make the common mistake of letting the DME provide you a basic non-data capable CPAP. Some will tell you it is data capable when all it does is record hours of usage - useless information to you.

[Hawthorne]

A-Flex and C-Flex are both features that allow for exhalation relief (different than an auto- adjust machine).

You want C-Flex and/or A-Flex. You want a data capable machine at least. An auto-adjust machine is data capable but also gives you the option of running it in straight cpap mode at your titrated pressure OR in auto mode, set at a range of pressures that allows the machine to determine diffrent pressures that may be needed during the night and automatically adjust the pressure up or down while you sleep.

There is 1 auto-adjust machine that does it all. It gives you the possibility of straight cpap and auto modes. It also has BOTH C-Flex and A-Flex exhalation relief.

It is the Respironics Remstar M-Series Auto with A-Flex. It does not mention C-Flex in it's name but does have both options available. The A-Flex can only be used in auto mode but C-Flex can be used in both auto and straight cpap mode.

I tried (maybe didn't do it very well) to clarify your assumption that "A-Flex is C-Flex with an auto-adjust for pressure". That's not quite right. A-Flex and C-Flex are types of exhalation relief. Auto-adjust indicates that a machine can be set to adjust pressures, as needed, during the night while you sleep.

Come to the forum often and read and ask questions before and after you get started on therapy. There are lots of people here able and willing to help you.

Good luck!

[nomoore]

I am so happy and grateful for all your responses!

I will definitely take all of your advice into account. Would this be the sleep doctor or my primary care physician that would be writing the prescription? I didn't even know you could rent a CPAP machine, I just thought you had to pay for one that you own, which I think might be the way I want to go anyway. I don't mind spending a few hundred dollars on my health.

I'm assuming A-flex is C-Flex with an auto-adjust for pressure?


From what I've gathered so far:

• Refuse any machine with ESCAPE or PLUS in the name.
• Insist on a data-capable machine.
• Request a heated humidifer.
• Request that my doctor include a DME on my prescription.
• Request a machine that auto-adjusts or at least has the C-Flex option due to my panic attack.

I'll call my insurance company to see what DME providers they use in my area. If anyone lives near North Hollywood, CA or in the Los Angeles area, feel free to send me a PM. I would love to talk more about your experiences. I'll search of course, but if anyone knows of any posts on here that specifically explain DMEs and what's involved, I would love to read them.

It's all a bit confusing at first, but I'll figure it out. Thanks again everyone!

You can get your doc to specify what machine you want or what features you want on the prescription. If you have a really good DME or you're buying out-of-pocket then you won't need to have him specify anything other than "CPAP at XcmH2O with heated humidifier" and of course a mask to go with it. You shouldn't have to have him specify which mask. Unless you buy it yourself you will probably need him to at least specify a fully-data-capable CPAP machine. You might want to convince him to prescribe an auto machine too. Just remember the more you have him specify, the more you are limited for future purposes unless he writes you a new prescription. Your primary care physician or your sleep doc can write this prescription for you.

Your doc CANNOT specify what DME you use. That is your choice. Your insurance company CAN specify what DME they will cover. They can give you a list.

If you buy out-of-pocket then you can get some great prices at cpap.com (they host this wonderful forum). They will price match other internet vendors. Remember the prices that they advertise are a minimum advertised price that the manufacturers set. If you get them to give you a price quote then it will be significantly cheaper on some of the machines.

[tattooyu]

I'm blown away by the support on here already! Seriously!

Thanks for the clarification Hawthorne and rooster.

I've just read the Our Collective Wisdom > Selecting Where To Purchase Your CPAP Equipment and the Our Collective Wisdom > Selecting Your CPAP Equipment sections. There's a LOT to do to get the right machine, but I'm a techo-geek and "one of those" who always requests written copies of all my medical test including basic blood work, so I'm used to doing that. I will not settle for a bargain-basement machine, but I'm not looking for a Mercedes either. I just want one that fits the bill, you know?

Because I am prone to panic attacks AND I had one at the sleep study without the C-Flex on, I'm hoping the doctor will be willing to write it up on my script.

Thanks again.

[tattooyu]

Your doc CANNOT specify what DME you use. That is your choice. Your insurance company CAN specify what DME they will cover. They can give you a list.

nomoore,

I called my insurance company this morning before I read the stuff in the Wisdom section, and she vaguely mentioned something about getting a DME provider, so I'll call them back and ask them to fax me a list of ones in my area. Are we allowed to post on here names of specific DMEs for feedback? Some boards don't like posting of links, company names, etc.

I'll have the doctor specify the TYPE of equipment, i.e., heated humidifer, data-capable, on my script but not brands. That should keep my options fairly open.

[GumbyCT]

Are we allowed to post on here names of specific DMEs for feedback?

I think that is the best way. Sunshine is THE best disinfectant.

I'm assuming A-flex is C-Flex with an auto-adjust for pressure?

Gumby thinks it best to learn not to make assumptions.

Watching this will help -
http://www.resmed.com/en-au/clinicians/ ... 40x380.swf

Start at the Yellow Lite bulb - Our Collective Wisdom found at the top of the page at http://www.cpaptalk.com
our-collective-cpap-wisdom.php
new-cpap-user.php

Watching this will help -
http://www.resmed.com/en-au/clinicians/ ... 40x380.swf
http://www.resmed.com/en-us/patients/un ... 40x380.swf
http://www.nbc.com/Saturday_Night_Live/ ... -2/742141/

take a breath, put on your reading glasses and get comfy
there is NO wisdom pill
and one size does NOT fit ALL
Faces are like fingerprints

Reading this will help -
For Acronyms & Definitions
http://www.sleepnet.com/definition.html

Where A CPAP Newbie Should Start
viewtopic/t35702/Where-A-CPAP-Newbie-Should-Start.html

READ cpaptalk.com FAQ
faq.php


Learn to search
use Google & the syntax "search words" site:www.cpaptalk.com
or the Advanced Search at the top of each page.
or here - viewtopic/t35702/search.php

This is the Yellow Lite bulb you'll hear people mention aka "Our Collective Wisdom" -
our-collective-cpap-wisdom.php

Search here if you like videos-
cpaptalk-cpap-video-movie.php

Read some more.
Good Luck,
GumbyCT

[nomoore]

Your doc CANNOT specify what DME you use. That is your choice. Your insurance company CAN specify what DME they will cover. They can give you a list.

nomoore,

I called my insurance company this morning before I read the stuff in the Wisdom section, and she vaguely mentioned something about getting a DME provider, so I'll call them back and ask them to fax me a list of ones in my area. Are we allowed to post on here names of specific DMEs for feedback? Some boards don't like posting of links, company names, etc.

I'll have the doctor specify the TYPE of equipment, i.e., heated humidifer, data-capable, on my script but not brands. That should keep my options fairly open.

You're on the right track. I can't say I remember seeing much talk about specific DME providers here so I don't know how it's taken by the cpaptalk.com host. The host is an online DME so they might not like it too much, though they do seem to be pretty cool about a lot of stuff. I just reviewed the rules for posting here and at a glance didn't see anything that would prohibit it other than maybe:

"While using CPAPtalk.com, you will not post any material, or links to any material that is (at our sole discretion) knowingly false and/or defamatory, inaccurate, abusive, vulgar, hateful, harassing, obscene, profane, sexually oriented, threatening, invasive of a person's privacy, or otherwise violates any law."

Personally, I would try to limit it to getting recommendations for your area via PM, just out of courtesy to CPAP.com.