New to CPAP. Sleep is far worse when using it. Desperate

[Pugsy]

The meds questions was just a general question...mainly referring to pain meds...like the opiates.
Just to rule out the possibility the centrals were maybe related to meds or other health conditions.

Your home study included the thoracic effort belt which is needed to help determine if your apneas were related to no effort (central) vs effort to breath but airway blocked (obstructive).

I wondered if you were outside the US because 50 series machines haven't been dispensed routinely here for about 3 years.
Yes, I understand about Ireland's NHS ....you aren't the first to come here from there with older equipment...you are lucky you got a humidifier and a full data machine.

From what I have heard they also tend to really get their knickers all in a wad if you go changing the settings...so that's another reason to not blindly change things.

I don't know if the 550 APAP is the best choice of machine for you at this point because we don't know how many centrals you had or are having now. The 550 is incapable of dealing with centrals because it can't respond quickly enough or high enough to deal with centrals.

Can you find out just what the central index was on that sleep study? If it was more than 5 per hour (just the centrals) then the APAP probably is not the best choice but given how NHS works...they will want you to at least try the cheaper alternative before going to the machine that can treat both central and obstructive apnea.

Let's see what the SleepyHead report looks like even if we know you aren't actually getting past just dozing off before you are jolted awake. Let's see what the machine thinks is happening.

Try to get a copy of the full report for that home sleep study if you can...especially the breakdown of that AHI into each type of apnea event.
If you have Complex Sleep Apnea (that's where you have both the obstructive apneas and the central apneas) with a substantial central component...I have my doubts as to whether you stand much chance of having any success with the APAP in auto adjusting mode wide open for sure...maybe a remote chance in a more fixed or restricted pressure mode.

Oh....you have the wrong humidifier chosen....the correct choice is the "PR System One Heated Humidifier"

[Tdub210]

Rjk I'm a newbie as well. I started last Friday. You can click on my name and get to the chest discomfort string to see what I've been going through the last few days, and the tremendous help I got along with way with it. Last night I think I finally tackled this thing as far as being able to comfortably fall asleep with it. It wasn't perfect by any means but the best I've done so far. I was ready to give up a few days ago, now I'm actually looking forward to using it tonight to see if I can get all the way through the night with it. No idea if my situation relates at all, but as you can see, this isn't an easy process to get started. I've spent a lot of time here and found lots of experiences that dont relate but lots that do, plus great help from others. I would probably have given up without this site. You're in the right place.

[yaconsult]

Welcome, Rjk! Thanks for providing all the additional information people need to help you. Unfortunately, it looks like you've been left on your own with the machine settings wide open in the hope that it will "just work". This is common, but the settings often need to be adjusted to customize the therapy.

I suspect that your settings are going to need to be tweaked with an increase in the minimum pressure, but wait for specific advice about when and how much from Pugsy or one of the other long-time, frequent posters here. For example, in my case I have found over time that a minimum setting of 13 is what works best to treat my severe apnea of 80. Everyone is different and needs to find out what works best for them. In my case, my in-lab sleep study did not show any central apneas, only obstructive, so centrals were not an issue for me.

Now that you're registered, please go to the equipment section of your profile and pick your equipment from the list and choose the "text" option. This will append your equipment information at the bottom of all your posts and save lots of questions.

You should never be gasping and feeling like you can't breathe - those are symptoms of untreated apnea and we've all experienced it before we got our treatment sorted out. You're in the right place - the folks here can help you. Hang in there and take it one step at a time. We'll need to get you set up with some software so that you can monitor your therapy. Once you fill in your equipment, that will probably be the next step.

[MarylandCPAPer]

Hi again! It appears that you have been provided the same type and series of machine that I used starting in Dec. 2009 until last month, when I got a new machine. Is yours a new or used machine? It is probably coincidental, but when my machine was ending its useful life, after 5 years, I had the exact same experience as you with not being able to get to sleep for many hours with the machine, and almost getting to sleep only to wake up. I don't have a history of a lot of central apneas, so the similarity in sleep experience is probably not due to the same cause. However, there is a very remote possibility that you were issued a worn out machine that doesn't work properly, as mine was after 5 years. I remember well the experience of using CPAP for 4 to 6 hours before I ever got to sleep, but that was only after my PR machine was at least 5 years old.

If it is determined that an Autoset CPAP machine is suitable for your treatment, it would great if you could get a Remstar Autoset data capable machine, such as the Resmed S9 Autsoset or the newest, the Resmed Airsense 10 Autoset. I feel that my therapy is better using the Resmed Autoset machine than it was on the PR Series 550 Autoset, even when the PR machine was brand new. However, I was happy with the PR Series 550 and got good treatment with it for the first 5 years. The PR and Resmed Autoset models use different algorithms for determining pressures, etc., and some people find that one works better than the other for them. Most of us have had to stick with the machine we were initially issued for 5 years. USA insurance usually only allows a new machine every 5 years.

As others have said, I would not change the settings until it is determined whether you mostly have central apneas or obstructive apneas, as the machine you need or the settings may be different for your needs.However, 4 is a very low setting and hard to breathe with, so I would ask your healthcare providers about increasing the minimum pressure if they tell you to continue using the same machine.

Is there any particular problem you have noticed with the masks you have tried? I have not used the masks you use, but others here have and may have suggestions if your mask is causing a particular problem to you.

Question to Pugsy and others familiar with the PR 550 series: Can Sleepyhead be used with this machine? I never tried, and the DME who issued my new machine kept the SD card from the PR machine and seems to have lost it. I would recommend writing your name on the SD card and never letting ANYONE keep it for more than a few minutes to do a printout of the data from the machine, as you may never get your SD card back. I was looking forward to trying it out in Sleepyhead and seeing how the pressure, leak, etc. compared.

[Pugsy]

Question to Pugsy and others familiar with the PR 550 series: Can Sleepyhead be used with this machine?

Yes, SleepyHead works with the 50 series machines.....so the 450, 550, 650, 750 and 950 all are compatible as well as the newer 60 series and the other brands.

[MarylandCPAPer]

Thanks, Pugsy.

[Rjk]

Hi Guys,

Well it certainly appears as though I am in the right place to receive valuable help and information for which I am really grateful for.
I was indeed given my CPAP machine and left to hope for the best, but with the info I am getting from you guys I am much better informed now when speaking with my care providers.

I am having a little difficulty installing sleepyhead, I have downloaded the programme but am unsure which of the files to open in order to install. I will figure it out.

With regards to my mask, it is actually quite comfortable and I don't seem to be having any issues with it.

I have requested the full results breakdown of my home sleep study and I will hopefully have them early next week and can take steps form there.
Hopefully after receiving them and in conjunction with next weeks CT scan and pulmonary function tests, I may have a much clearer picture of the best path for my future treatment.

But for now I have decided not to use my CPAP until my care provider nurse calls to my home on Monday. I was getting no sleep whatsoever with it so I feel its best to go these next three night without it and then resume once the problems have been investigated.

[yaconsult]

You don't really "install" sleepyhead, in the traditional sense. It is self-contained in the folder you unzip it to. The main program is SleepyHead-OpenGL and you can right-click on this and choose Send to Desktop (create shortcut).

There is a known issue on windows 7 because microsoft removed a certain library file from windows 7 and the solution is around the middle of this page: http://www.sleepfiles.com/SH2/ You just need to click on the link and install the file from microsoft.

You'll have it running in no time!

It's worth giving it a shot with the nurse, but many of us find that while the medical folks may have a lot of theoretical knowledge, they don't have the practical experience that you will find here. Many people are surprised and disappointed that the medical folks don't even want to look at the data collected.

The important thing is how much rest you get and how you feel.

[TallyAP]

Looks like you are getting plenty advise. My two cents are to STAY WITH IT. Try new masks and tinker (a little) with your settings. It takes a while to adjust and learn to breath using the machine and masks. I bought and paid for at least 5 different masks before I found the right one. It took me over a year to be fully comfortable with my equipment.

I had a similar diagnosis of central and obstructive apnea but a new sleep study and doctor dismissed the central apnea. I have been using CPAP for over ten years and was a healthy and thin 40 year old when diagnosed with apnea after my wife finally had enough of my horrible gasping episodes at night. Stress can also negatively effect or exacerbate your apnea. So, pay attention to your work/life stress levels as you work towards a successful life using CPAP.

Also, I have never had the "life changing" experience that some people talk about. So don't look for that feeling as an indication of if it is working or not. HOWEVER, I am better rested and have not woken in sweats with my heart racing from a lack of oxygen since I started using CPAP.

Good luck and don't get too frustrated. With a little effort and experimentation you will find the right equipment and settings that work for you.

Final note.. My doctor did recommend a light sleep medication for the first two weeks.

[Dorian]

Sorry to hear you are having so much trouble. I am a newbie as of last week and my experience has been good - I attribute it mainly to the Resmed P10 nasal pillows which really do seem to make CPAP easier. Over the past week I've made a few changes, like a different chin strap and wearing the mask over the strap and not under but now I wouldn't go to sleep without CPAP - I feel much better in the morning with it. Stay with it and keep trying new things until you find a solution. I didn't like the nasal mask or full mask during my sleep study - the nasal pillows are much better for me. I have also turned off the ramp setting that started my pressure lower. I didn't feel like I was getting enough air so I turned ramp off. My pressure is set at 10. I have an autoset machine but am just running it in straight CPAP mode at 10.

[Tdub210]

Rk....where do you live?
How come they gave you a 50 series machine?

Oh and by the way I was able to successfully register, hence the new username.

Rjk,
I had the home study as well. Not sure why but I don't think it matters much. They used the same equipment and I got similar results to yours on the AHI. I also just got verbal but, I'm going to my Dr. tomorrow and requesting the full report as suggested to me by the fine folks here. I'm also in decent shape, probably could drop 10 but not too bad. Also, similar, I had no idea anything was going on except that my wife told me about my gasping and choking and stopping breathing in the night. As far as I was concerned I was sleeping just fine. I don't have high blood pressure, didn't have headaches or dizziness or anything like that and I was still able to exercise regularly. I will say though, my wife's complaints about my nighttime activities has been over the last 2-3 years. Over that time, I have noticed a certain fatigue, loss of concentration and focus. I figure, I've probably had apnea for a long time but it's gotten to the mod-severe category over the last few years. I started on the machine just over a week ago. Day 1 I thought I'd simply put the thing on and all would be well. Much to my chagrin it didn't work that way. I took it off after about 10 min night one. Nights two and three a couple hours. by night four I worked myself into such an anxiety my chest hurt. I came here and got tons and tons of advice from great people who have been there and done that. I was having chest pains and was aware of my breathing throughout the day and went to the ER to make sure I wasn't having a heart attack (I was fine). Finally, late last week I got some great advice to just relax, put my mind right, and breath normally and naturally when I put my mask on (special thanks to Chicago Granny). Since then, I've made it all night with it on. I do wake up 3-4 times a night but fall back asleep quickly. And I have not experienced some great awakening burst of energy making me want to dance around the house or anything like that. Up until today I was a little sluggish. Partly due to the lack of sleep for several days and possibly partly due to the anti-anxiety meds they gave me to calm me down after I mentally worked my own self into that. I didn't take the anti-anxiety med last night but did take a sleep aid (over the counter unisom). I made it all night with the machine but did wake up a few times. I finally got the Sleephead to work and I looked at my results, even got some feedback from here. It appears the machine is doing its job and today I actually felt more alert and focused. Again, not some crazy burst of energy or anything like that, but I did feel closer to normal. So, what I'd say is there are a once in a few here to take to it right off, but most of us find it difficult, but sticking to it and coming here and reading posts about the things that affect you and getting advice is critical. Personally I think it saved me from quitting. I went from telling my wife "I wish I didn't have the sleep test so I didn't know about this" to liking the machine now. I'm actually finding it comforting now. It's a tough adjustment but thats what this place is for. Wish you the best and I can only hope to pay it forward for what the folks here have done for me.

[Tassie Devil]

I have not read all the replies to your original post but suggest you look at an earlier post here of mine at
viewtopic.php?f=1&t=107140&p=1021507#p1021507

Your experience is a common one and one I have also experienced. Your brain is rebelling against a new sleep routine. Hang in there, it does eventually adjust. Maybe only use CPAP for the first few hours until used to it.

Good luck

John

[Tdub210]

I have not read all the replies to your original post but suggest you look at an earlier post here of mine at
viewtopic.php?f=1&t=107140&p=1021507#p1021507

Your experience is a common one and one I have also experienced. Your brain is rebelling against a new sleep routine. Hang in there, it does eventually adjust. Maybe only use CPAP for the first few hours until used to it.

Good luck

John

Exactly. Also, another tip I got from here, try wearing it during the day when you're not trying to sleep. Take the pressure off yourself and wear it while watching tv or reading or something other than sleeping. It willl help you get used to it.