Newly diagnosed-- what to expect?

Kakkles · Post by **Kakkles** » Thu Jul 02, 2015 9:45 am

purple wrote:Might be possible to get off medication or reduce it. Actually depends on your experience in real life. Please realize I do not know what the medication is, or what your are taking it for. Also guessing you are thinking that the medication makes it easier to sleep, and perhaps helps to make you less alert. Or it has some side effect/cost which is why you are concerned about that med right away

Thanks for the post purple....

I take trazadone and zopiclone at night. Have for about 15 yrs now, for insomnia. I feel groggy on awakening and always tired during the day and have a slight headache all the time. More so in the past two yrs. and my first sleep apnea test last year said I have mild sleep apnea but they said to just monitor and retest this year which I did, and now with my second test I have been asked to come in for a 1 hr appoint with machine set up.

So have I felt crappy just because of medication or untreated sleep apnea too? I would love to be able to go off medication so I am looking forward to seeing how this all pans out.

I wondered what others experiences with this have been if any?

After reading the posts on here, and wading through much information--- I realize it's not going to be a magical easy transition. But I do look forward to the end results of hopefully feeling better overall!

Kakkles · Post by **Kakkles** » Thu Jul 02, 2015 1:43 pm

Received a test machine for a few tries from a relative who has OSA (but does not comply with the machine)...He said I could try it to see what i thought. I have no idea what to set it at or nothing. He went through the instructions with me and it seems pretty straight forward. I got the headgear and nasal mask set up easy enough....

It is a Phillips Respironics RemStar Plus C-Flex System One..heated humidifier/hose. I won't be using the data card as I don't see the point ....I will be getting my own Tech Appoint in 12 days so I will wait for all that then. But he thought it would be a good idea for me to see what it feels like to have it on at night and just try it out. He suggested I start out at a setting of 3-4....

Is this wise to do? before I know my test results? Is this a decent machine?

Thanks

palerider · Post by **palerider** » Thu Jul 02, 2015 1:55 pm

Kakkles wrote:Received a test machine for a few tries from a relative who has OSA (but does not comply with the machine)...He said I could try it to see what i thought. I have no idea what to set it at or nothing. He went through the instructions with me and it seems pretty straight forward. I got the headgear and nasal mask set up easy enough....

It is a Phillips Respironics RemStar Plus C-Flex System One..heated humidifier/hose. I won't be using the data card as I don't see the point ....I will be getting my own Tech Appoint in 12 days so I will wait for all that then. But he thought it would be a good idea for me to see what it feels like to have it on at night and just try it out. He suggested I start out at a setting of 3-4....

Is this wise to do? before I know my test results? Is this a decent machine?

turn the knob to setup, hold it down till it beeps, turn it to setup again, and press, then you can check the settings. there's videos on youtube about how to get into the setup menu if I misstated, or you have questions.

there's no worthwhile data on the card with a plus machine, it's a brick.

however, wearing the mask while watching tv, reading, etc. will let you get used to it...

if you know what your rx is supposed to be, then you can set it to that.

Kakkles · Post by **Kakkles** » Thu Jul 02, 2015 2:00 pm

Thanks PR! Appreciate that...I will try setting it up and go to YouTube for instruction if I screw up.

Good to know its a brick. They will sell you anything at the DME to make a buck....I will make sure I won't get this one!!

Wanting a Resmed Autosense 10 for Her....so will be pushing for that...

Have a good one!

poppi2 · Post by **poppi2** » Thu Jul 02, 2015 2:09 pm

Kakkles wrote:...Wanting a Resmed Autosense 10 for Her....so will be pushing for that...

It's like trying to bargain with a car dealership. You have to stand your ground. Know what you want before going in. Be prepared to walk away. Also, have a copy of your prescription in your hand. Good luck, Earl

Kakkles · Post by **Kakkles** » Thu Jul 02, 2015 4:09 pm

Thanks Earl,

I won't accept less and will get my Dr to prescribe it. Just knowing they gave my Uncle a "brick" less than 1 1/2 yrs ago? Open my eyes to how they deal and listening on this board. If my Dr refuses (which Im sure she won't) and the tech pushes for something I don't want? I will walk away....I'm the one paying after all...

Kakkles · Post by **Kakkles** » Thu Jul 02, 2015 9:47 pm

palerider wrote:
Kakkles wrote:Received a test machine for a few tries from a relative who has OSA (but does not comply with the machine)...He said I could try it to see what i thought. I have no idea what to set it at or nothing. He went through the instructions with me and it seems pretty straight forward. I got the headgear and nasal mask set up easy enough....

It is a Phillips Respironics RemStar Plus C-Flex System One..heated humidifier/hose.

there's no worthwhile data on the card with a plus machine, it's a brick.

however, wearing the mask while watching tv, reading, etc. will let you get used to it...

if you know what your rx is supposed to be, then you can set it to that.

Ok I am pretty impressed with myself! While I do not know what my rate should be set at because i havent seen my sleep study till next week, I am going to trial this Philips machine at setting 4 with humidity ...just so I can get a feel for it on my face...nasal mask, etc. Its just for a trial run to see how I cope...

But Im impressed in that I got handed the machine and hose/mask....told a few instructions...got confused and went to YouTUbe...and used some of the advise off this site..and voila...in 10 mins I had the machine all set up properly..got the mask and head gear figured out! I feel more confident already!!

The machine I want when I purchase is different, but I feel if I can do this? I will be able to work it no problem! (I hope)!!!

NOW: THe real test starts...putting it on...starting it up and trying to get any sleep!

Wish me luck!

bwexler · Post by **bwexler** » Thu Jul 02, 2015 10:13 pm

Many of us could not breathe/would feel suffocated with the machine set at 4 or 5. I have never had a fixed pressure machine myself, but would be more inclined to start a t 6 or 7.
By the time you read this you will probably know weather 4 works for you.

Kakkles · Post by **Kakkles** » Thu Jul 02, 2015 11:43 pm

Ok, so I tried that for an hour.

I have some stupid questions to ask: I used a nasal mak, the seal was good, no air leaking that I could feel. I breathed in, and naturally for me I exhaled through my mouth. Well the rush of air was choking me.

So then I thought this is not right I can't keep my mouth open right? So breathed in and back out through my nose into the nasal mask. It felt like a heavy air in there. Within 10 mins I had a bad headache. I don't know what I'm doing.

As mentioned previously this was a loaner machine for a few days and he is a smoker so his equipment smelt like smoke, which I am allergic to. So that doesn't help either.

Not defeated, but rather " deflated" for the night. I took it off and will wait for my first appoint July 14 to have everything explained.

MarylandCPAPer · Post by **MarylandCPAPer** » Fri Jul 03, 2015 1:33 am

It very well may be that being allergic to smoke and using a smoker's equipment caused your headache. I am also allergic to smoke and would not even consider using a smoker's mask. And yes, when you are using a nasal or nasal pillows mask, you need to keep your mouth shut and breathe through your nose. You'll get used to it. When first experiencing a mask and hose blowing air into your nose, it takes getting used to. You may need a different pressure, or to use ramp, or not use ramp. I would wait until you get your own equipment and not experiment with a mask used by a smoker. Don't let this bad experience discourage you.

Kakkles · Post by **Kakkles** » Fri Jul 03, 2015 7:59 am

Hi MarylandCPAPer .. I wouldn't have considered it either but it was my uncles and I didn't think I could smell it at first in the nasal mask. It had been cleaned by my aunt so I thought it would be ok. But once I had it on yeah it was there. I just woke up with the worst headache ever.

I found breathing in through the nasal mask fine but breathing out through it felt weird. It felt like it was real heated and I had to force it back out. I worried I was breathing back in my exhalation. I felt like I was doing it wrong.

At least I know I can use a nasal mask and not feel claustrophobic. That's a plus.

Thanks for you words of encouragement. Yup I'm waiting to see now for my own appointment.

Kakkles · Post by **Kakkles** » Fri Jul 03, 2015 6:23 pm

MarylandCPAPer:

you have had a few nights now with the Resmed for her....how are you liking it? Im trying to gather any info on it to see the pros and cons.

Thanks

MarylandCPAPer · Post by **MarylandCPAPer** » Fri Jul 03, 2015 10:18 pm

Kakkles wrote:MarylandCPAPer:

you have had a few nights now with the Resmed for her....how are you liking it? Im trying to gather any info on it to see the pros and cons.

Thanks

The first night, I was ready to drop the machine off a tall building, because the DME set some things like the ramp in a manner that would never work for me. I am an experienced user (5.5 years on my first APAP machine, before this one) but he wouldn't believe the settings I wanted. So, I had to make a number of adjustments at first and get into the clinical menu to do it (which you should NOT ask the DME how to do--people here will give you a link to the manual). After doing that, I am hibernating 14-15 hours per day with the new machine, which for me is not atypical, although not good. I would like to be pain-free and full of energy on less sleep, but I was using a malfunctioning machine for at least a few months and getting little sleep, so I probably need to catch up.

The Airsense 10 Autoset FOR Her seems to be a great machine, current top of the line, state-of-the art CPAP/ APAP. I think you will like it, although don't judge it based on just the first night or even first week, since you are new to treatment. It has all the adjustments needed to help you get great treatment for sleep apnea long-term, which is most important. It may take a little time to learn which settings are right for you. That is normal.

It's a shame you have to wait so long to get your new equipment from the DME. Is the appointment at your home or at the DME's office? You might be able to get an earlier appt. if you go to the DME's office. I always do. If they "forget" anything or you want to see something different (mask, etc.) or they try to stick you with the wrong machine, they are more likely to have access to what you ask about than if they come to your home.

Good luck!

Kakkles · Post by **Kakkles** » Fri Jul 03, 2015 10:47 pm

Glad to hear things are working better for you on this new machine than the first night!

My appoint is at DME, supplier. I have to travel 1 hr to get there so I can see this mask issues being a headache if I have to go back for adjustments! Up here ( canada), or at least for me, they phoned and set up an appoint at their earliest time available which for me is July 14. I see my Dr on Tuesday so I'm hoping she will go over my results. She is not a sleep Dr, but my regular doc. I'm assuming they know how to read the results? I really have no clue about what the tests mean. I try to follow some of the other peoples sleepyhead results and it confuses me. I guess once my appointments come and things are explained I will know more.

I have a letter typed up for my Dr. Stating I want the Resmed for her, the hose I want, options for patients own mask choice, etc. so when I see her? It's laid out. She is pretty good, so I'm sure it won't be an issue.

Just listening to others dealings with the DME, has me a bit worried they will try to bedazzle me with a brick machine. I get 80% coverage so I pay 20% out of pocket. I want the latest updated, best machine out there as they replace only every 5 years.

But when I go on the 14 th, I get whatever rental machine they give me for a one month trial to collect data from it. If I respond to tx, then I go back, return the rental and buy my own machine. At this meeting is where I will be telling them too that if I have to buy I want the Resmed for her. Hoping they respond well to that and try not to bowl me over by saying it's not the machine for me and want me to buy something cheaper that's not as good!

Tuesday I will have more info. I keep hearing to get copies of my sleep report and a copy of prescription. Guess I will have to do that too. Though it's still cheaper for me to go through DME with my insurance than just order online.

Thanks for the info and best wishes. Hope things continue to work out for you with the new machine. I'm sure I'm going to have lots more questions once i know more of what's going on for me!

MarylandCPAPer · Post by **MarylandCPAPer** » Fri Jul 03, 2015 11:04 pm

It's good to have a copy of the sleep study and CPAP prescription, as you may need it if you ever have to switch DMEs. After 5 years, I was surprised they wanted the original sleep study, not the more recent sleep study, but that is what was needed to meet Medicare (USA) requirements. Also, the first 90 days of compliance data from when I first got the machine. My original DME had it all on file (sleep study, compliance data, etc.) and emailed it to me so I could supply it to the second DME.

People here like data, graphs, etc. when you are having questions and problems, and some may be included in your sleep study. There are lots of reasons to get and keep a copy.

i keep forgetting you are in Canada and things work differently there. July 15 is just 11 days away, but it seems like forever when you're motivated to get started on treatment. Your primary care dr. may understand sleep study results or may only read you the summary. Mine didn't understand the detailed graphs, and she uses CPAP. In any case, you may want or need to refer back to the sleep study years later. If you travel, you should pack the CPAP prescription with your CPAP equipment, to prove it is medical equipment, and also in case you have to get CPAP supplies on the fly when away from home in an emergency.

It would be helpful to be using an Autoset machine, ideally the same one you would be buying, for your one month trial. You might try calling your DME before your dr. visit and asking what kind of machine you would be using during your one-month trial, then posting here to find out what people think. It's a simple question. You may need to talk to a respiratory therapist at the DME to get an answer, not just the person who handles insurance, but they know what they're going to try to get you to use.

if the machine the DME wants to try out on you is not what would be appropriate long-term, it would be good to know before you go to the dr., so you can get the dr. to write a prescription for a different machine if necessary.

Remember, you are the consumer and the one who will be using the equipment for many years to come (and only can get a new machine through insurance every 5 or so years, most likely). You may shock them by being so knowledgeable as a newbie, but if you have to, just tell them you have friends on CPAP / APAP treatment who they are helping you out. The DME may not like it, but that is the truth, isn't it?

Newly diagnosed-- what to expect?

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