Newly diagnosed-- what to expect?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Kakkles
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Newly diagnosed-- what to expect?

Post by Kakkles » Sun Jun 28, 2015 1:16 am

Just got the call I have to meet the techs on July 14 th to have a 1 1/2 hr appointment to go over test results and equipment. So I am assuming that means my test showed I have sleep apnea!

Haven't seen my Dr yet but do before this other appointment. I have been reading some of the threads on here, some encouraging and some seem challenging. I'm trying to keep positive.

I wonder do people ever feel claustrophobic with nasal pillows? I don't think I could do a full face mask. Did you have any say in what kind of machine you'd like? I have been researching and like a specific brand/ model. I have some insurance coverage, but will have to pay 20% so I want a top end model with humidifier. ( since I get some coverage I feel might as well take advantage of that and get what I want/ need)

I just keep wondering how I am going to sleep! I am a side sleeper but like to toss around-- maybe I won't toss as much now?

It feels overwhelming. Anxious about this appointment and the idea of this being life long!

Thanks for listening! Any input is appreciated.

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Sheriff Buford
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Re: Newly diagnosed-- what to expect?

Post by Sheriff Buford » Sun Jun 28, 2015 3:12 am

There are many threads on newly diagnosed newbies.... and what to look out for. I'll try to make it short and sweet:
- make copies of your prescriptions. Ask for two.
- one prescription should day "mask of patient's choice".
- get a data-capable autoset machine. Decide before hand and ask the doctor to put it specifically on the prescription. Tell the Doc you want an autoset machine for comfort reasons. You can run an autoset machine in either the cpap mode or the autopap mode.
- make sure the machine you get is the one you ordered. Sometimes the equipment place will try to pull a switch-er-roo on ya'.
- read all you can here... do searches... and educate yourself before the meeting- work all your issues here. We are here to help you.
- know that finding a mask that is comfortable and doesn't leak is the key to successful therapy. The mask I use... you may hate... and vise versa.

Hope this helps. Others will probably chime in and help.

Blessings, Sheriff

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49er
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Re: Newly diagnosed-- what to expect?

Post by 49er » Sun Jun 28, 2015 3:27 am

Kakkles wrote:
I wonder do people ever feel claustrophobic with nasal pillows? I don't think I could do a full face mask.
Actually, it is the right mask for someone who has claustrophobia. Look at the P10 as it is very minimalist.

Welcome to the board.

49er

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OSAHell
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Re: Newly diagnosed-- what to expect?

Post by OSAHell » Sun Jun 28, 2015 6:31 am

Hi Kakkies,

Sheriff Buford made some good points and I will add:
-Get a copy of the FULL PSG report of your sleep study (should be 4 pages or more)
-Get your titration report if you had a split night study

And for the mask, I never felt claustrophobic with any kind I've tried so far (FFM, nasal, pillow). Also, I'm a side sleeper myself, but more like the falcon sleep position and toss around (changing side few time in the night). I found nasal pillow to be the best for my position but I unmask (unconsciously during sleep) more often with it. My first sleep clinic let me tried many masks at home before I found the right one. For the machine, I started with a loaner and switched to an other one at some point. Maybe you'll be able to do the same. As for the machine brand, I would stick with those 2 brands: Resmed or Respironic. They have good support in Sleepyhead and many people have them here.

It's a good thing that you start early in informing yourself about all this, and you asked good beginner questions. But try to not get to anxious about how your therapy will go.

Good luck

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Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
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Kakkles
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Re: Newly diagnosed-- what to expect?

Post by Kakkles » Sun Jun 28, 2015 7:36 am

Thanks everyone! I'm anxious about it all. Your suggestions are valuable and I will be sure to ask the questions to the right people.

Now I just wait and educate!

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Bill44133
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Re: Newly diagnosed-- what to expect?

Post by Bill44133 » Sun Jun 28, 2015 8:00 am

Take 15 minutes and review this youtube video it will help you understand what is going on.
https://www.youtube.com/watch?v=-gie2dhqP2c

This video put the whole thing in perspective for me.

It should be required viewing for any one who is new.


I wish you well...

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Kakkles
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Re: Newly diagnosed-- what to expect?

Post by Kakkles » Sun Jun 28, 2015 8:17 am

Thanks so much! The video was great and helpful. Easy to understand.

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Kakkles
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Re: Newly diagnosed-- what to expect?

Post by Kakkles » Sun Jun 28, 2015 3:06 pm

Can someone explain Sleepyhead to me and I read it works on a MAC.....but does it work with any machine? Im not sure what it really is about? Thanks.

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palerider
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Re: Newly diagnosed-- what to expect?

Post by palerider » Sun Jun 28, 2015 3:50 pm

Kakkles wrote:Can someone explain Sleepyhead to me and I read it works on a MAC.....but does it work with any machine? Im not sure what it really is about? Thanks.
read the first post in the announcements section.

sleepyhead is written on a mac, and works on windows, macs and linux.

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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Re: Newly diagnosed-- what to expect?

Post by bcpap » Sun Jun 28, 2015 7:07 pm

Duh! I didn't even see that! Thanks!

purple
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Re: Newly diagnosed-- what to expect?

Post by purple » Sun Jun 28, 2015 8:09 pm

Some folks have apprehension about will they feel suffocated. Not unusual. After getting the right pressure, I do not think anyone complains about feeling suffocated. To the contrary, they feel like they can breathe better than they ever before.

Emotionally, It can help to turn the machine on before putting the mask on. What a lot of us say when we start treatment is; "I am not sure I can breathe with this thing on, it is like breathing with a hurricane in my face."
After a month or so, we say, "I think my machine must be broken, it is not blowing as hard as it used to."
Machine is blowing the same. Both are just a subjective feeling.

However, those who think that it is easy to self titrate with a machine set to auto, with a starting pressure way lower than what they need, they can feel suffocated.

In reading data. Data is of no use if much in the way of leaks are present. Stopping Leaks, finding the right mask, are the typical problems of a newcomer. Do not obsess to much about doing more than getting leaks under control, feeling OK with using mask all nite. But it is perfectly fine to study what is happening, how to read data. There is a lot of frustration in doing Sleep Therapy treatment. The reward is that when the treatment works, it is like coming back to life. Before treatment, I wake up every morning, "It can not be time to get up yet.' Walking around tired. Then after treatment. "Wow, I have so many things I want to do today. "
Last edited by purple on Sun Jun 28, 2015 8:37 pm, edited 2 times in total.

Kerriboberri
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Re: Newly diagnosed-- what to expect?

Post by Kerriboberri » Sun Jun 28, 2015 8:16 pm

I just started with a BiPAP on June 1st. Started with pillows, didn't work for me. Friday night started with full face. Was at the cabin all weekend so not sure but so far think it's better for me.

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bwexler
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Re: Newly diagnosed-- what to expect?

Post by bwexler » Sun Jun 28, 2015 8:16 pm

Purple, I have experienced both. When I first got my ASV machine, I remember it fighting me. It wanted me to inhale when I wanted to exhale. And it was quite persistent. Later, I find myself using various methods to verify the machine is actually on. It usually is.

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Kakkles
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Re: Newly diagnosed-- what to expect?

Post by Kakkles » Sun Jun 28, 2015 8:55 pm

Thanks everyone!! I tried to read the Sleepy data and it gave me a headache..lol..Way too much info for me when I havent even had my initial "talk" with the techs....Once i get set up..get going and get the right machine and masks...I might try that again....

Appreciate the input!! I feel anxious about the whole thing.

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MarylandCPAPer
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Re: Newly diagnosed-- what to expect?

Post by MarylandCPAPer » Sun Jun 28, 2015 9:41 pm

I am a bit prone to claustrophia and have used various nasal pillows masks over the last 5.5 years with absolutely no problems with claustrophobia. I could not tolerate a full face mask, though, probably claustrophobia-related. Also,I have a cat who likes to "talk" with me and expects me to answer. Talking would be impossible with a full face mask but is no problem with a nasal pillows mask.

There typically is a 6-foot hose. As you change sleep positions, it moves with you. You will figure out how best to manage the hose. If you have any pets, get a cloth hose cover, as the CPAP hose is fragile and can easily be punctured by a cat's claw--learned that from experience, necessitating a new hose.

If you happen to have any particular issues with this touching your face, such as TMJ problems, be sure to mention them to the tech who is helping you select a mask. No single mask feels right for everyone, so be sure to try on a number of masks at the meeting at which you get the machine. Of the current nasal pillows masks, Airfit P10 seems to be a fairly popular nasal pillows mask. It is about as lightweight as I think they make a mask. There are four choices of sizes of nasal pillows, as there are 2 models, a regular model with Small, Medium and Large, and a "For Her" model with Xmall, Small and Medium. I have found the nasal pillows to be durable and have used mine for 1.5 years, even though most insurance allows you to get replacement nasal pillows a lot more frequently than that. Some of the other nasal pillows I used at the start collapsed or were unusable within weeks.

Ideally, you would try the mask with the CPAP machine on when you meet with the durable medical equipment (DME) rep, but I don't think I ever had that opportunity.

I always meet with the DME rep at their office so I can see new masks and so there is a selection of masks in case they (or your doctor or the sleep study specialist) recommend a mask that I absolutely cannot stand, which is usually the case. Finding the right mask for you is very important to the success of your treatment. Often, a mask can be returned for credit within 30 days if it doesn't work out for you, but ask about the return policy before you accept the mask and the machine.

Which machine have you decided you prefer? You can get lots of feedback on machines here. Insurance or Medicare may only pay for a machine every 5 years, so you want to get the best you can (for your needs). I have used my CPAP machine every night for the past 5.5 years, and it appears I have worn mine out. I am in the process of getting a new CPAP machine with auto-titration abilities, as I need a range of pressures. The original prescription I got was for a fixed pressure, so I was lucky my DME provided a machine with auto-titration abilities from the start. I just had to get a doctor to change the prescription for a range of pressures and the DME set the machine accordingly. APAP (instead of a constant pressure) and changing masks were the keys to success for me. Without the advice from members of this forum, i would never have known about APAP (auto-titrating PAP), which my dr. agreed was a good idea once I brought it up, but he didn't come up with it on his own. Also, this forum is great for getting feedback on various masks. I learned about several obscure masks here that shocked the DME, even though they had them in stock, one of which was perfect for me until it broke and the mask stopped being manufactured.

If your doctor will let you have a copy of your sleep study in advance, it may help to review it. It will probably seem like Greek until you meet with the doctor (and afterwards, too), but it will help with questions people here may have if you have any issues after starting CPAP therapy. People here are usually very supportive and extremely generous in sharing their experiences and knowledge, much more than doctors, techs, DMEs and sleep specialists typically ever are. I have had good experiences with the two DMEs who have provided my equipment, but not everyone is so lucky, so be sure you get your doctor to prescribe the machine that is likely to give you the most flexibility and data capability, and make sure the DME actually provides you with that machine, not a substitute with a similar name but less capability.

Once you start CPAP therapy, you should feel much better and get better sleep. I look forward to hooking up with my machine every night and can't sleep without it. I never would have thought i would say that.

Good luck with starting treatment and getting set up with your CPAP equipment.

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Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Have also used Opus 360, Swift LT for Her, Optilife, and Breeze Nasal Pillows masks.
Started CPAP 12/18/09 Pressure 13. Changed to APAP 1/18/10, Pressure 10-16. 4/2014:Switched to AirFit P10 mask. PR System One REMstar Auto Series 550 with A-Flex for 5.5 years. 7/2015 to present: AirSense 10 AutoSet FOR HER. Range: 10-20