Day 50

I've now been using the Auto set machine for over a week, so the machine has recorded the pressure level each night and now has an average for the week. The pressure for the week was 9.6. So over all it's still a significant drop from the original level 13 that my fixed machine was set too.

Due to the holidays I've missed a couple of days for the singing excersises, but will commit to making sure I do them every day as I don't want to start undoing all my hard work that I'd done over the last 6 weeks or so.

If I don't get a chance to log on again soon, I wish you all a wonderful Christmas, and I hope all your wishes come true.

pain/tiredness/level

0/2/9.8

Day 47

I spent most of last night pinned in to one position by the two cats. I'll give them one night of luxury but if they do it again tonight I'll have to kick them off. Even though I had a restless night I slept pretty well and don't feel too bad at all today. The humidifier seems to be working well and I think I have the level just about right. It's using just over half of the water that it holds and doesn't seem to be over wet. My throat is only slightly dry in the morning, but there is no discomfort to worry about. I'm not really getting much pain from where the mask rests on the bridge of my nose as well. So those two things together seem to give me a good quality of sleep, which is more important to me than just the number of hours sleeping.

pain/tiredness/level
0/3/9.8

Day 46

Very slowly I'm getting more and more used to the autoset machine. But I'm still not feeling as refreshed as I was when I was sleeping well with the fixed machine.

However the pressure seems to be changing, it will be interesting to see if it does continue to drop, Friday was 10.8, Saturday night 9 and Last night, Sunday was 8.6.

I wonder if the reduction in pressure is encouraging my body to try and work better itself. Or it could be the singing for snorers kicking in. Or it could just be that as I'm not sleeping as well with the autoset machine, I'm waking up more often and therefore the machine doesn't need to push as much pressure down the mask. Whichever reason, I'm going to try and stick with the autoset machine for as long as I can, even though I'm so tempted just to go back to my fixed level machine.

pain/tiredness/level
2/5/8.6

Day 43

I was playing around with the new humidifier yesterday, as I didn't seem to be using much water over night. I expected it to reduce a fair bit but this didn't seem to be happening. It was recommended that I set the humidifier to 2 and put it up half a level until I felt the dry throat had stopped. Anyway playing with the machine, the level adjustment changes the temperature of the hot plate under the water tank. It turns out that the hotplate didn't even come on until I reached 3 and even then it just flashed on and off, which didn't even make the hotplate feel warm to the touch. It wasn't until I go to 4 that it became hot, and 5 was too hot to touch. So last night I started off at level3 and during the night I turned it up to 3.5 as my throat was quite dry and sore.

I woke up this morning and the water tank had dropped down to about 20% full. So I'd inhaled about 80% of the water, previously the water level was only dropping by about 5-10%.

I do feel better this morning than I have done since using the new autoset machine. I was really beginning to think I would have to switch back to my old machine that has a fixed level. Hopefully my body has now adjusted to the new system and I can really start to see some improvement in the quality of sleep and hopefully a reduction in the pressure required to ensure my airways are kept open.

Pain/tiredness/level
2/4/10.8

Day 42

Again I felt like I slept well, but a few hours after waking I started feel tired again. I slept for about 45 mins during lunch. I'm beginning to think that the nurse was right about the system not being great for everyone. I think I'm one of those people its just not right for.

I went out last night with friends for a few drinks and ended up getting home rather late and a little "bouncy" as my partner described me this morning. I slept like the dead and woke up with a lovely hangover.

I'm sure to have to lay down later today and try to ease the self inflicted tiredness

Pain/tiredness/level
2/6/10.8

Day 41

Weird day yesterday. After waking up feeling so good, I started to have some really odd feelings of anxiety. As the day progressed and I began to feel more and more tired, until I ending up having to go to sleep at lunch time for about 40 mins. I still felt very drained the rest of the day and ended up sleeping again at 5pm for another 40 mins. After both naps I was still able to fall asleep pretty much straight away at my normal bedtime. I'm hoping that it's just my body adjusting to the new machine and that things will improve.

Pain/tiredness/level
1/4/9.1

Day 40

Yesterday I picked up the load Auto Set machine from the hospital, as well as a new humidifier. They are always so helpful and friendly there, it's just so frustrating that it's so hard to actually speak to someone and get and appointment, but I guess that is fairly true of any NHS department. But thank you ladies, I do appreciate the service you give to me.

As you may know my old machine was set to level 13 (13 cm H2O) which was causing me no end of problems so I dropped the pressure down to 10 and then nudged it back up to 11. This made a great difference and clearly indicated to me that I needed my pressure changed.

I set up the AutoSet machine, that constantly monitors your breathing and adjusts the pressure accordingly. One thing the nurse did say was that sometimes this can result is a pressure that is slightly lower than is really effective. But it depends on the person. Like all Sleep Apnoea treatments it's a bit of trial and error to get it just right as everyone is different.

I fitted the mask as instructed and settled down to sleep. It took a while as I wasn't used to the pressure being so low. During the night I did wake and glanced at the reading on the machine to see what it had adjusted itself to. It was on level 8 (8 cm H2O). I was stunned. This was the level my first machine was set to about 5 years ago. Even taking in to account that the reading might be slightly low, it's still a lot lower that the original level 13 my machine had been working on.

This obviously could be due to a load of different reasons. But of course the one in to forefront of my mind is the singing for snorers. As I've been given the loan machine to use over the Christmas period, it will be very interesting to see how the levels change as I continue to do the singing exercises. I'll now be adding a third figure to my pain/tiredness rating, whilst I have the autoset machine I'll be listing the level on there as well.

Pain/tiredness/level
1/3/8

Day 39

Not a bad weekend. Saturday I was up early with stomach ache, but was able to get my head down for another couple of hours in the afternoon. On Sunday I managed to sleep in until about 8:30

Last night I didn't get to bed until midnight and then couldn't get straight off to sleep so I'm quite tired today. As this it just due to stress and not specifically related to my condition I'm not too worried about it.

I have my hospital appointment later today to pick my auto set CPAP machine. I'm looking forward to seeing what the machine sets itself to. Last time I had one it set itself to level 13 which is what I've been trying to adhere to ever since. I've been told that I can use the machine over the holiday period and so I'm hoping that with the singing exercises I may actually be able to see the level reducing over this period.

Pain/Tiredness
0/5

Day 36

I left the machine on level 11 again and I'm delighted with the results so far. The reduction in pressure from 13 has made a significant difference. The Mask is now much easier to fit and not so tight. I'm no longer woken by the vibration of the mask as it leaks. I'm dreaming like CRAZY! I have no idea what other people experience but for me being able to remember that you dreamt the night before feels like a confirmation that you had a great nights sleep. I had some crazy, wonderful and bizarre dreams that upon waking make you smile at just how inventive the resting mind can be. I seriously think that I feel more refreshed in the morning after a night of really good dreaming.

Today I feel good, not really tired, more just relaxed and soothed. There was only a slight mark on the bridge of my nose caused by the full face mask. But really nothing that was too troubling.

I did my singing exercises last night instead of during the day as I would normally do. As I was doing them I suddenly had this image of a group of Singers For Snorers getting together and doing some kind of performance. I still feel rather embarrassed when I'm singing and feel that singing with a group would help break down some of those barriers and making it a bit more normal. Maybe something to think about once I've completed the course. The Singing For Snorers Choir!

Pain/tiredness
0/1

Day 35

I reset my CPAP to 11 and spent some time adjusting the straps to fit the mask at the new level. All seemed to get well apart from a brief interruption to my sleep when I somehow managed to pull out the hose from the mask. I was woken by the jet of air being blown into the back of my head.

I feel that I slept well and can even remember some dreams, which to me is a good sign that I was sleeping properly. Still a little dozy this morning, but nothing too bad. It always amazes my how long it takes the body to recover from a few nights of poor sleep.

Singing for Snorers is going well, I can do most of the exercises OK, but the Lilly Lilly...... starts off well but then I guess my tongue just gets tired and can't keep up. But I guess that's why they are called exercises, as you have to work hard at them to achieve them.

If I'm still having problems with it next week, I'll try and practice that exercise twice a day and see if that helps

Pain/tiredness
1/3

Day 34

I've reduced the pressure level on my machine to 10. It may sound like quite a drop from 13, but originally I was on 8 so it's about halfway. The mask fit was 100 times better, there was never any vibration and the straps could be loosened a fair bit and still create a tight seal. I may put the level up to 11 tonight as I'm still feeling tired, but I've not had to have a sleep during the day so far. It was so much more comfortable to wear most of the time, even though the bridge of my nose was still sore, I think that just spending some more time adjusting it tonight should help that.

pain/tiredness
1/5

Day 33

Really tired again today. Again I felt like I slept well during the night, but this morning I could hardly keep my eyes open. I even had to go back to bed at 10:30 am as i just couldn't stay awake. As a sort of a completely non-scientific test, I decided to sleep with out my mask, but to video myself and see if I snored of had any apnoea's.

After a 45 min snooze, I woke feeling a little better. I did however get woken about 4 or five times gasping for air and had a sore throat as well. Upon reviewing the video tape, I found that I hardly snored at all, the only time I did was briefly before I suffered and apnoea. The may have been due to the fact that I wasn't tired enough to sleep through the attacks to any degree so never really got into a good old snoring session.

I called the Hospital again this morning. I thought I'd give them a call pre 9am and see if I could catch them before the got too busy. It worked! not only did I speak with one of the technicians there, she new what I wanted as she had just listened to my voice mail from the day before, but more importantly she called me back in the afternoon and booked and appointment for me to pick up the auto set machine, which she said I could keep over the Christmas period. Which is wonderful news indeed!

My reasons for wanting to try the auto set machine, is I don't believe it can be good for you to have the CPAP machine at such a high pressure for someone relatively young as I am. It's already on level 13. In addition to these concerns I'm also conscious of the fact that the main problem with my leaking and vibrating mask is that the pressure is so high it's almost unusable, god knows I'm try my best! Also because of the singing for snorers I want to see if this has had any effect already. Using this machine will allow it to auto sense my own requirement and adjust it's self accordingly. I'm keeping my fingers crossed that since doing the singing lessons I should see a reduction in pressure required to keep me breathing all night. Even if it just does that and doesn't cure it completely it will be, for me, a resounding success.

It does make me wonder as well, if the signing and the CPAP are having a bit of a falling out. What I mean is that as the signing is improving my throat, the cpap is still currently set to a high pressure, this really may need to be reduced which in turn would improve my sleep. Almost like being weened off the machine, as my muscles firm up so the pressure can be dropped, until I either need it at a very low pressure or not at all.

Well one can dream........ erm unless you are having an apnoea.

0/6

Day 32

I'm really having problems waking up this morning. I thought I slept well, but I'm reallying looking forward to my second cup of coffee already and it's only 10am. Not sure why I don't feel as refreshed this morning. I did wake at around 6am as the mask was vibrating so maybe that was happening all night and I just didn't wake up completely to adjust it.

One thing I must say, as I'm tired and a bit grumpy, I must have a quick moan about my hospital. I went to see them on the 10th Dec. They were great and gave me a new mask, and said I could call them the following Tuesday to arrange picking up a humidifier and a load auto set machine as I wanted to try one out and see if it would be worth me investing in this advanced piece of equipment. I've now been trying for THREE WEEKS to get them to return may calls. I've left over 15 messages on their answer machines with no one ever calling me back. I have managed to speak to a real person twice. The first one put me straight though to another answer machine, the second one promised to make sure someone called me back. Still nothing.

I know they are busy and have extremely limited resources but the only thing I have left to do now is to start getting angry! Which will most likely get me no where at all.

So if you are Julia Chapman from St Thomas' Hospital in London UK, PLEASE PLEASE PLEASE listen to you answer machine and give me a call back. I'm looking for a humidifier for a S8 Escape CPAP machine and the loan of the Auto Set machine to see if it will be worth me buying one.

According to the Map Stats, someone from the area around the hospital is reading this blog so fingers crossed it you, or at least someone in your department that can arrange to call me back so that I can come in and pick up the equipment.

(END OF MOAN)

pain/tiredness
1/5

Day 31

Went back to the gym again today, felt 100% better. The only thing I can think of is that I did drink on Thursday and Friday night, so Saturday I would have been really quite dehydrated, so I think that would have caused the lack of energy yesterday.

Also, joy of joys, I slept in! Right up to 9am that's a full two hours than I normally do.

Pain/tiredness
0/2

Day 30

A really weird day today. I slept really well, even though I did wake at 7:30, I was again denied any chance of a lay in. But I did have a bit of luck with the mask. Some more adjustment of the forehead rest seemed to have relieved some of the pain to the bridge of my nose. If it works again I'll put up a pic of the change that I made. Technically I actually ended up forcing the mask down firmer on the bridge of my nose and the seems to have spread the pressure over a larger area. It's hard to explain so I won't try to.

Even though I thought I slept well, I've been very emotional today. Even at the gym I was unable to raise my hear rate to any decent level as I was just unable to muster the energy to run or cycle fast or hard enough.

I'm just feeling extremely miserable and fed up with fighting the whole time to try and have a relatively normally waking and sleeping life.

Pain/tiredness

0/6

Day 29

I had a bit to drink last night so slept very heavily and really could have done with a couple more hours in bed. But such it the trials of a working man. I did make sure I adjusted my mask though before going to sleep so at least I got a fairly decent nights sleep.

I've be practicing the training section on CD2 of the Singing for snorers set. I first completed the exercises on CD1 then I went through the training lessons on CD2. BLIMEY! they are HARD! At first I really thought I was never tongue around Lee Lo Lay, La Loo lay..... lillylilly ........ BLAH! But I'd already been told that is was going to challenge me and it certainly did that! So I stuck with that routine for 2 days. First CD1 then the training section on CD2. I did that for 2 days. This morning, I did the CD1 but then tried the CD2 normal exercises. Yeay! just two days of practise and I could pretty much do it. So from tomorrow I'll just be doing the exercises on CD2. Bye bye CD1 !!

Oh one thing I will have to mention, I not only feel that my throat muscles are really being worked, I've also notice they my stomach is also beginning to tighten. I guess all the work I've been doing on the singing lessons has also been working on the diaphragm and the internal core muscles. It's like singing for Pilates as well as Snorers!

Pain/tiredness
1/4