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The Snoring & Sleep Apnoea Forums

New to CPAP

Keep a diary here. Everyone can read your post ... it is _not_ private. Post things you feel may be useful for others to read.
DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

New to CPAP

Post by DeenJai » Sun May 26, 2013 9:13 pm

Hi
I’m Dee and the other park of my user name is Jai he is my beautiful German Shepherd dog. I have fibromyalgia and many other health problems. In December 2012 I was having problems getting to sleep so I was put on Mirtazapine 15g tablet to help me get some sleep. My doctor asked me how sleepy I was in the day time I said that I needed to have a nap during the afternoon but at times I am struggling to stay awake. He asked me to do the Epworth Daytime Sleepiness Scale and I scored 23/24 which was very high. My GP referred me to Respiratory Medicine to have a sleep study. On 5th May I had my two night home sleep test. On 28th February I saw respiratory medicine doctor and his told me that I did have sleep apnoea and he would refer me to another hospital so that I could get my equipment. I finally picked it up on 9th April. I haven’t had a good night sleep since I was 10 years old because of the pain I had when I would lie down. So I have nearly 32 years of catching up with sleep so I know that it will take a while for me to not to need the nap during the day.

The machine I have is the REMStar System One A-Flex machine it also has the humidifier. The first mask I tried when I was at the hospital was one that goes over the nose but it just forced my mouth open so she gave me one that covers my mouth as well. The mask was Amara the smallest one as I am not very big. I used that for a while but I was find that it was making my corner of my eyes were getting sore so on 13th May they changed my mask is ResMed Mirage Liberty full face mask again in the smallest size. For the first 10 days my nose was sore but in the last few days my nose isn't sore anymore.

Now on the treatment I wore the mask all night on the first night as I thought that if I am going to have use to this equipment for the rest of my life I might as well get on with it. Straight away because I didn’t toss and turn as much as I normally do every night because of the pain in am always in. In the last six weeks I have noticed I’m slowly getting less sleepy during the day but still need to have a nap every day. I am trying to stick to just two hours of a nap but I’m struggling to keep to the two hours and I think it could be due to using the CPAP. I might stop using the mask when I am having my naps as I am finding that is why I’m struggling to wake up after the nap even if I have set an alarm to get me up. I know that I should use the mask when I am asleep but I need to be able to wake up after the two hour nap.

I know it still early days of using CPAP as only been 7 weeks. The benefit I have found so far is that I am not moving around so much as I did before as I would be every few minutes. I will let you know how I am getting on each week.
Dee & Jai

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Week 7

Post by DeenJai » Thu May 30, 2013 12:24 pm

I didn't have a great night last night i struggled to get back to sleep once i got to go the toilet. Tuesday night was ok and only once to go to the toilet and got back to sleep quickly. I did a sleep test with my oximeter which can record what is going on during the night. I only had 23 episodes of my O2 sats and 175 episodes in pulse.

My o2 sats dropped from the normal range to 94-90 was 19 times and twice in 89 - 85 range. time in events(mins) O2 12.3 and avg. Events dur. (secs) 32.0 index: (1/hr) 2.5

Pulse Total Events: 175
Time in Events (min) 47.9
Avg. Event Dur (Secs) 16.4
Index (1/hr) 19.1

I'm not sure what all the figures mean so hopefully someone can tell me what it all means.
Dee

User avatar
Sleep2Snore
General Snorer
Posts: 2777
Joined: Tue Oct 14, 2008 10:20 pm
Location: Aberdeenshire

Re: New to CPAP

Post by Sleep2Snore » Wed Oct 02, 2013 4:20 pm

Sorry Dee, I missed your posts for some reason :?
S2S - Sleep2Snore

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Tue Oct 15, 2013 7:56 pm

I have finally found a mask that suits me and also a head gear that I dont get a sore head with. I think it could have been the dyes in the material which I am reacting to. I am currently using the ResMed Quattra Air full face mask which is the mask which has suited me. I have tried 5 other masks before this one. Currently I am using a cap for my CPAP mask.

Over the last could of weeks i have noticed that my snore rate has increased from a few to some nights over 40. Should I be worried that this increase and also my RERA has increased so I am not getting as good as sleep I should be getting.
dee

User avatar
Sleep2Snore
General Snorer
Posts: 2777
Joined: Tue Oct 14, 2008 10:20 pm
Location: Aberdeenshire

Re: New to CPAP

Post by Sleep2Snore » Wed Oct 16, 2013 5:03 pm

I don't know what machine you have, if it is an APAP/CPAP, but if your events are going up or you are snoring and you have a CPAP it may be that you need a slight increase in pressure. If your oxygen levels are going down you need to get the clinic to look into it.
If you start to feel tired again, it is a sign something is not quite right.
If you have put on any weight lately, hard not to do sometimes, you may need a slight increase. If it is an APAP you have it should have compensated for you needing more pressure on its own.

Contact the clinic for advice, they are there to help.
Most people will not contact the clinic, but most of the clinics are only to happy to help.
S2S - Sleep2Snore

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Thu Jan 02, 2014 11:33 pm

Again the machine changed it mode on New Years Eve and I had a great night sleep. The mode was on Bi-Level. I didn't have a nap yesterday because I wasn't tired in the afternoon. i was more sleepy in the evening but I am always tired in the evening. Last night it was back on APAP and by 1130 today I was feeling quite tired and I ended up with a three hour nap which isn't good. I will look again on Sunday to see what is going on. I am marking the days where it is on Bi-Level so I can see what is going on.

I keep a daily diary which is divided into four sections so that i can monitor what is going on. I am also making down the quality of my sleep, pain levels and fatigue. Hopefully it will help with explaining to the Sleep Unit that there is a problem with the machine.

I am finding that when it is on APAP I am more tired and always need a longest nap in the afternoon which isnt good for the night sleep as it could mean that I struggle to get to sleep. Also when it on Bi-Level I dont have a problem waking up as when on APAP. How do I explain this to my local Sleep Unit as I would like to stay on Bi-Level machine because I feel so much better when it is on Bi-Level.
Dee

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Thu Jan 02, 2014 11:36 pm

I have Philips Respironics System One RemStar Auto with A-Flex (561P). It has been used before I had the machine as it says it was used for 109 days but it is also missing 9 days of data as it starts from 18 April and I started on 9th April.
Dee

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Sat Jan 04, 2014 1:00 pm

Hi
this is the start of the lettering i am writing to my local sleep unit:

I am writing this letter because I have noticed since October that my Philips Respiratics System One RemStar Auto with A-Flex has been changing from APAP to Bi-Level mode. I am using Sleepihead Software to see that data from the machine. I have noticed that when the machine is on Bi-Level mode I am less sleepy when on this mode during the day. When I am on straight APAP then I always have to have a nap in the afternoon because I am falling to sleep watching telly. I know that the AHI is variable on both modes but I just feel better when on Bi-Level and I didn’t need a nap during the afternoon which is a good thing.

I have noticed more recently that I have been sleeping a lot more than in the first couple of months of APAP treatment so days I have been sleeping more than 12 hours a day which means I’m not living a life.

I download the data and use a spreadsheet to see if I can see a trend or any patterns in the data that I have just downloaded and this is where I have noticed that the machine changes mode. From April – 28th September the data doesn't make much sense but when you click on the different areas then it does. I have enclosed all the spreadsheet data for September 2013 – January 2014. Could there be a fault on the machine for this to be happening. I have also enclosed the data from Sleepihead to show you what is going on.

Please do correct or amend that doesnt make sense to you as I have serve dyslexia.
Dee
PS: Happy New Year to all on the forum.

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Sun Jan 26, 2014 11:23 am

Hi
Here is an update I had an appointment with my Sleep Unit and when the person looked at the data she noticed that I am having lots of clusters of Central Sleep Apnoea's. She spoke to one of the engineers if she should order a full sleep test as I had a two day home study so they wouldnt have been able to see what was going on.

What should I expect when I have the test done if it shows that I do have issues with CSA. Would I come home with my old machine or will they replace it with a different machine which treats both CSA & OSA. What type of machine would they give me to treat this and how quickly do you think I will get use to the machine.
Dee

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Tue Feb 04, 2014 8:07 pm

Hi
I haven't heard from my unit yet about my sleep test. I am really struggling to stay awake during the day. Most afternoons by 2pm I am fighting to stay awake.
dee

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Sat Feb 08, 2014 10:12 pm

Hi
I got a call from my sleep unit on Friday and my sleep test is on 18 February. Dont looking forward to 630am wake up call as it takes me ages to wake up if I want to get up at that time i would need to set my alarm for 4:30am which I wont do. I will ask them to book hospital transport home, but get the bus to the hospital as transport finishes before 8:30pm.
Dee

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Fri Feb 14, 2014 10:31 am

I have noticed since I stopped using my machine I am feeling totally knackered. its been only been five days without the machine I didnt think it would be that quick to feel so tired. I am waking up at lot less refreshed without it. Hopefully next week I will have a new machine and then I will see improvements with my tiredness.
Dee

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Mon Feb 17, 2014 12:25 pm

Also I am having issues with waking up early like this morning I woke at 4am and then I couldnt get back to sleep which is very annoying as it means that I am knackered by midday but I'll try to stay awake until at least 3:30pm as I know by then I will be fighting stay awake. Only another 33 hours to my full sleep study and then i will find out what type of Sleep Apnoea I have and then get the right machine to treat it.
Dee

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Tue Feb 18, 2014 10:07 am

Hi
this isn't strickly CPAP related yesterday my power-chair went in for a major repair so now I am without means of getting out. Tonight will be fun because the hospital that I am going to have my study done is up a hill from the bus station and no buses go up it at night. I am going to give myself at least 40 minutes to get up the hill.

I have a fast heart rate even at rest so dread to think what it will be after pushing up the hill in my manual chair which i don't use that often because of the problems I have with my hands and also if I push too hard I go into spasm for days in my mid back. Currently I am struggling with spasms because of a conference that I went to on 30 January so that is three week ago. I am still suffering from being jolted around getting into a building which didnt have wheelchair access had to go over a deep fresh hold and then a 2.5" step. It also damaged my left back arm that has its own suspension and wheel.
Dee
PS: I'll let up know how it goes tonight.

DeenJai
Sergeant Snorer
Posts: 33
Joined: Thu May 23, 2013 8:00 am

Re: New to CPAP

Post by DeenJai » Wed Feb 19, 2014 5:05 pm

Hi
I am not sure how it went last night as I struggled to get to sleep, someone had very noisy shoes when they walked around and also someone had a radio on that I could hear. I think I did get some sleep but not sure if it was good sleep. I left the unit just after 6:45am and then went and got some breakfast which I feel that it should have been provided like on a ward. The cafe in the hospital didnt open until 7:30am so ended up in a little cafe that really cater for my special diet but I had some thing to eat. I couldn't use my bus pass until 9am so had a long wait. finally got home around 10:45am which makes it a long day already. I ended up having a nap within an hour getting home because I was falling to sleep.
Dee
PS: How long do they normally take for them to give you the results of the sleep study. I have started using my machine again.

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