Sleep Apnoea

2010-06-21T04:05:00.000-07:00

I'm not use if I've ever mentioned before. But I'm not over weight. In fact the last time I went to the doctors he said I could afford to put a bit on.

I say this because for the majority of people, Sleep Apnoea is a direct result of them being over weight. Period. If they lost weight, chances are they would resolve most of their snoring issues and would no longer have sleep apnoea.

I however am not in that group. It seems that me and every member of my family has some kind of design flaw in our internal throat that causes us to snore so badly that we stop breathing for a period. That's right, everyone in my family has this condition.

My father (who has never been overweight) also now has vascular dementia, which in my mind could have been aggravated, if not directly caused by him having sleep apnoea for 70 years without treatment.

My sister has it, although she is overweight, she is working on that, but even if she was "normal" sized then she would probably still have this condition.

My brother, recently got himself into a spot of trouble with the police. It seems his anger management issues were recently accentuated due to his CPAP machine not working properly.

Recently my niece has also begun to think she has it too. As yet she is too scared to get it checked out, in case she ends up having to wear a mask like the rest of us.

2010-05-18T08:29:00.000-07:00

FULL FACE CPAP AND GOATEES

Been a while huh!?

Well I'm still here and I still have Sleep Apnoea.

I was just looking through the keywords that people use to find this site and strangely one of the things that people pick up on is using a full face mask when you have a goatee.

I must admit I was really getting fed up with the nurse telling me that any leaks I get would be caused by having facial hair. Which to be honest really annoyed me!

It's just a really lazy excuse not to follow up on any problems I was having. I had to really push to have them understand that I never suffered from leaks around my mount area, it was always just under my eyes. I have a very pronounced (AKA BIG) nose and not terribly big cheek bones, so I'd often suggest that the masks just weren't designed for people with my facial features.

I actually went through a period of about 18 months where I'd wake up in the morning with a bright red mark on the top of my nose that would, no kidding, be there ALL DAY!

After several masks, of different sizes and shapes, I managed to work out that by changing the way to put the mask on at night made a HUGE difference.

I used to align the mask from my chin, and then pull over the straps. This felt like the right place, but I'd have to pull the top straps quite firmly to stop the leaks in the cheek/eye area. Now I position the mask from the top down. So first I position the top of the mask as far up the bridge of my nose as possible. (If the mask ends up in your eyes, you've gone too far! :-) )
Having the mask right up the top of my now meant I didn't have to pull the straps so tight to get a good seal. After adjusting the bottom straps I was read to go.

I have noticed that if I change the settings on my straps at all, I tend to wake up an hour or so later and have to fine tune them to stop any leaks. But after that it's fantastic!

So if you do have facial hair, like a goatee you can use a full face mask successfully, don't fall into the trap of believing you are doomed to suffer from leaks because of it. Spend some time adjusting your mask and see which way works best for you.

Most importantly of all, don't give up!! This damn thing is a pain in the butt, however when it works it's effectively extending your life!

Good luck!

2007-10-25T02:38:00.000-07:00

Nee Naa Nigh Nah!

It's been a while since I posted as I've really not being doing a lot about my Apnoea.

Last time I posted it was in May. Since then the following things have changed: -

1: SAD light: It being summer there has no need to use the light. Now that the day light hours are getting shorter I will start to use it again.

2: Pressure on my CPAP machine, I think I posted previously that I'd had to increase the pressure of my machine as I was beginning to snore whilst wearing it at night. This has happened because I haven't been signing at all in months, so the muscles have begun to relax again. But it took a good 3-4 months for this to happen.

3: Singing, I stopped signing for a long time. My job sometimes makes it difficult to find the time, so I took a piece of advise from a fellow singer and now, I do 10 mins in the morning and the rest in the evening. 2 x 10min sessions are much easier to fit into any busy schedule. I've been singing again for 2 weeks and should be ready to reduce to pressure again on my CPAP machine, YAY! The good thing about tonning muscles, just like going to the gym, is that it's much easier to re-tone them the next time. I could probably get away with only doing the singing every 2-3 days. But then I tend to forget and end up not doing it at all, so doing at least 10mins every day seems to be the best plan for me.

4: The gym/weight control. My weight has fluctuated a litte but nothing a bit of smart eating for 1-2 weeks hasn't been able to fix. The Gym however is another thing. Again due to changes in my work schedule it's been very hard to find the time to go. I'm seriously thinking about getting up and hour earlier and going to the gym then.

pain/tiredness /level
1/2/12

2007-05-16T03:07:00.000-07:00

Day 218

Back in the "Sing" of things, Har har :-)

Since my lapse in singing, I have notice 2 things:-
1: Suddenly waking up almost every hour. Resulting in very poor sleep.
2: Occationally found myself to be snoring with my mask on, so I have had to increase my pressure to 10.5 !

I'm sure the sudden waking was due, in part, to have apnoea attacks. Also having to increase the pressure to combat the snoring which I was aware of, clearly demonstrates to me that the singing DID improve my sleeping and allowed me to reduce the pressure.

So I'm back to signing every day and will retain the pressure at 10.5 for a period until everything is back on track. It shouldn't take long as once you have trained a muscle it takes only a few days to re-train it.

pain/tiredness/level
1/4/10.5

2007-04-27T04:34:00.000-07:00

Day 199

I've been a bad singer. I've been extremely busy finishing off my dimploma for life coaching that I've not been giving myself time to complete the exercises every day.

I'm not sure if this has caused my currently strange sleeping issue which is to wake up almost ever hour with a strange feeling through out my body, almost like an itching. Once awake I throw off the covers for a while and allow my body tempreture to lower a little. After that I pull over the covers again and drift back to sleep.

I'm hoping that after a couple of days catch up with the singing these strange sleep issues will subside.

One other thing that it could be is that I've also not been going to the gym on a regular basis either. So it may just be that I'm not as physically tired. Add that to the pressure of finishing my training I guess the stress from that would also give me another reason not to sleep well.

pain/tiredness/level
2/4/9

2007-04-03T07:57:00.000-07:00

Day 172

I've been doing the singing exercises pretty much every day. I do feel a lot better although I went to a friends birthday party on Saturday, got completely trashed and didn't get to bed until about 4:30 am. So I spent most of Sunday recovering and even though today is Tuesday I can still feel the remains of the sleep disruption. But then so does everyone else that went so it's always nice to know that feeling sleeping isn't always because you have a disorder. Sometimes it's just down to having too much FUN !

Pain/tiredness/level
1/3/10

2007-03-26T01:15:00.000-07:00

Day 164

*NEWS* Several things to tell you this week. After last weekend when my partner was ill, then I was suffering from stomach pains, sleep quality was really poor and I was also starting to have mood swings again and then I realised something:-

With everything that was going on in my life I had forgotten to do my singing exercises. Something else that really should have triggered the realisation was that I began to gently snore whilst using my CPAP machine. This is pretty much unheard of, so my first reaction was to turn the machine up a little.

After a few nights of better sleep I started up iTunes to play the singing exercises and realise that it was 6 days since I last did them! It was at that point that I also realised that I could actually feel my throat closing up. I had been feeling it for a few days but just didn't realise it.

It was like I had something stuck in the back of my throat and it was making it hard to swallow. Further evidence of this was found when I notice I had to raise my head a little to allow me to swallow at all.

All these things amazed me, it was so clearly due to me missing several days of singing. Since then I've been doing the exercises every day and can already see and feel a significant difference. The good thing about toning muscle wherever it is on the body, once you've toned it, it doesn't take long to get it back into shape after a short rest period.

I know that a university is doing clinical trails at the moment and they are due to be completed this year. But I would love to know what happens to the test subjects that have been doing the exercises, when they stop doing them for 1-2 weeks. I'm sure that they will soon notice a dramatic difference. When you are doing the exercises the change is quite slow so sometimes it's hard to tell, which is why I started this blog in the first place as now I can clearly see an improvement. But I'd love to hear what happens to others that have an extended period of not signing after they have been for several months.

For me, it really did prove, the signing has made a significant difference.

I'll remain on the raised pressure for a few more days before reducing it again.

Pain/tiredness/level
1/3/10

2007-03-19T09:00:00.000-07:00

Day 147

I'm SO TIRED! I've had a dreadful weekend. Everything was going just great until at about 9pm on Friday night my partner started being sick. Then a few hours later he was having diarrhoea as well. We think it was a case of food poisoning but we aren't really sure. It was a long night which ended with me driving around London at 3:45am looking for "immodium". I eventually got to bed at around 4:30am. The rest of the weekend was spent trying to clear up and catch up on my sleep.

To top it all off, I myself had stomach pains last night that kept me awake most of the time. I was wrapped around a hot water bottle for most of it.

So nothing to do with the Sleep Apnoea, but it really has knocked me for 6 not getting even half a night of decent sleep.

I'm sure this is going to take several days to get over.

pain/tiredness/level
2/5/9

2007-03-12T04:31:00.000-07:00

Day 140

A very average week, so nothing really to report. I've slipped a little on the singing I only managed to do it three times last week. So I'll have to make more of an effort this week.

Other than that I have been sleeping extremely well. I've had a couple of early nights which did wonders for me. The mask doesn't feel like an interruption to my life but just a simple part of it that no longer causes more problems than it tried to solve!

Pain/tiredness/level
0/1/9

2007-03-06T03:40:00.000-08:00

Day 134

I still have good days and bad days. Recently I've been going to bed around 11pm, but at midnight, I suddenly wake up as if I've been drinking way too much coffee, which I haven't. My whole body is tingling or itching and it has taken sometimes hours to get back to sleep. I'm not sure why its happened and its only happened a couple of times in the last two weeks. The rest of the time I've been sleeping extremely well. In fact one night I tried sleeping without my CPAP mask. After a couple of hours I woke my self, whilst dreaming I had chewing gum stuck in the back of my throat...... yep it was my apnoea kicking in.

I was a little disappointed at not being able to sleep with out the mask, but to be fair I do have quite bad apnoea so it could take a while longer before I can be completely free. I did however reduce the pressure on my machine again. I believe this is a great way to assist re-training my throat to stay open as I'm gradually reducing the pressure as I continue to do the singing exercises during the day. I'm now on level 9. Remember I started using the machine on level 8 and went as high as 13 before I started the singing for snorers. So one thing is for sure, I have been able to reduce the pressure thanks to the singing. This makes the mask easier to wear and has also allowed me to sleep in the car/train/plane without having an apnoea attack.

As a side note, my sister stayed with me at the weekend. She commented on how well I look and how young. She also has sleep apnoea, in fact all my close family have now been diagnosed with it. They all found out about it after I started using my machine and got tested themselves. Sure enough, my father, brother and sister all have OSA to some degree. So hopefully if I continue to improve as I have been doing I can buy them a copy of the CDs and help them get back some normality of sleep.

pain/tiredness/level
0/1/9

2007-02-26T01:51:00.000-08:00

Day 126

I went away for the weekend to Rome. I was a great trip, we walked for miles, ate pasta, pizza and saw the wonderful Roman buildings and generally loved every minute of it.

On the Saturday we went back to the hotel for a sleep in the late after noon as we'd been travelling most of the day before and then walking all day. I started to drift off with out my mask but felt that my throat was closing up so I put the mask on and slept for about 3 hours! After waking I removed the mask and snoozed for another 30 mins or so, with out any apnoeas. It seems that when I'm truly exhausted then I'm still prone to have apnoeas. But I have also been able to sleep with out the mask. For example on the plane and the train I was able to fall asleep and did not have an apnoea, in fact I didn't even snore! 4 months ago when I first started this blog, I was semi proud of the fact that I could even snore sat upright on a plane or train. This is no longer true. I can now sleep on public transport without the embarrassment of loud snoring or jumping awake whilst having and apnoea and gasping for air like some kind of freak.

I recorded myself practising the exercises and sent them to the creator of "Singing for Snorers". She very kindly gave me some tips on how to get the most out of them. So I gave them a go and was amazed at how much more work I could get out of adjusting the way I was doing the exercises. So I'm committed to working on CD3 for at least another month before trying to sleep without the CPAP machine again.

pain/tiredness/level
1/4/10

2007-02-20T01:15:00.000-08:00

Day 120

Every day in every way, I'm getting a little better.

Yesterday my old boss commented on how well I looked. I thanked him and wondered, if there was one thing that has made this now outwardly visible difference. I can honestly say, I think it's a little bit of everything! Here is a list of the things that I'm doing:-

Singing for Snorers : Almost every day I'm working on the exercises and have notice a difference in my ability to sleep has improved significantly. I have now twice fallen asleep with out the aid of a CPAP machine in the last two weeks. I'm not aware of have ANY apnoea attacks during these naps. I do recall some slight snoring. Almost cute as opposed to highly offensive! In addition both times my partner was unaware of any snoring at all.

Keeping fit at the gym: Since Jan 8th I have lost 12lbs (5.4kgs). According to my electronic scales I have lost around 4% of my body fat. This helps me sleep better at night as I'm burning up the excess energy that I may have allowing me to improve the quality of sleep. When I was first diagnosed with sleep apnoea my resting heart rate was 85-90 bpm. This has now been reduced to 68-72bpm. Without a doubt I have extended my life by improving my health and sleeping practises.

SAD light: Whilst working at home, I found that I needed some kind of desk light. I went for the extra brightness of the SAD light so that I could give myself that natural boost rather than relying on that extra cup of coffee.

Reduce Coffee: First thing in the morning I now drink boiled water with a few drops of lemon juice. It's wonderful at rehydrating the body after it looses a lot of water during sleep. The lemon helps with the taste but also seems to reduce any mucus that may have also built up. I've not had a stuffy nose at all.

Diet: To help with the weight loss and to generally improve my eating habits, I've been following a diet called "The South Beach Diet". After doing a bit of research on the internet and checking a few forums it seemed to be the best way for me to go and most importantly doesn't force you to be hungry all the time. In fact if you get hungry you probably are eating enough! A standard day for me would be:- Breakfast, flourless/sugarless chocolate torte, a fruit juice and a protein shake, 11am snack, Clementine and a babybel light cheese, Lunch any salad, 3pm snack some mixed nuts, Dinner pretty much any meat or vegetarian based meal, replacing potatoes with either butternut squash or sweet potatoes, this is always followed later by a protein rich dessert like greek yoghurt and fruit. Since being on the diet I've not had any heart burn for which was previously so bad I was hospitalised at one point in 2005 for suspected heart attack (aged 35).

I'm sure there are lots of other little things that I'm doing that I will try to highlight in future postings. But above are a few of the main significant changes that I have put in place over the last 120 days.

Soon, very soon, I will try sleeping with out my CPAP and video myself to see how well I'm sleeping now. I have previously recorded myself so I will have something to compare. I'll let you know how I get on.

pain/tiredness/level
0/1/10

2007-02-12T03:09:00.000-08:00

Day 112

I was just reading my post from last week and I suddenly noticed a pattern. Again this Sunday I was feeling very grumpy. Although I've reduced the number of visits to the gym, I have been doing a class on Saturdays. This class is very hard and generally at the end of it I'm completely worn out. I think this class is just too hard for me and I've decided to stop doing it until my fitness level has improved some more.

I also had a session with one of the trainers last week and he has given me a routine to follow for the next four weeks. So hopefully now that I have a more structured routine to follow I'll not be over doing it so much.

It's very hard sometimes to notice that your sleepiness is being caused by other things than your sleep apnoea. Having the condition blinds you a little into blaming that for pretty much everything!

During Sunday I was up fairly early, but felt very tired and so went back to bed around 11:30. I decided to try sleeping with out the CPAP machine, but using the MAD to help open my airways a little. I do not recall waking up at any time during my nap gasping for air or even snoring. Although I was pretty tired and may have slept through it or forgotten it. Next weekend I will repeat the trial and this time video myself to see if I do experience any apnoea attacks.

I'm continuing to practice the Singing for Snorers, pretty much every day. I've noticed that now I'm able to really focus on the muscles at the back of the throat and feel them opening and closing with much more vigour.

Although I'm not really able to tell myself, I'm sure that my singing voice does actually sound better and cleaner than it has done. Of course as I've now been singing nearly every day for over three months I'd expect some improvement!

pain/tiredness/level
0/3/10

2007-02-05T01:38:00.000-08:00

Day 105

I've reduced the number of times that I'm going to the gym and it has helped a lot. I'm no longer needing to sleep during the day and I'm sleeping and dreaming much better at night.

I've also reduced the pressure on my machine another level, I'm now down to 10. I did this because I was beginning to feel that the mask was too tight again and that the pressure was causing more discomfort and problems that it was helping.

I slept with the machine at 10 all weekend and have had no adverse side effects as far as I can tell yet. Although I was a little grumpy on Sunday, but I think this was more due to a late night on Saturday and some drink. So I'll leave it like that for a week and review how I'm feeling.

Pain/tiredness/level
1/3/10

2007-01-29T02:23:00.000-08:00

Day 98

I think I've been over doing it a bit at the gym. I've been going almost 5-6 times a week and as I've been going for a while now, I've been working out pretty hard. I've been getting very tired during the day and have had the occasional lay down during the day. So from this week I'm going to reduce the number of sessions I have per week and also make that I have a rest day every third day. I guess I'm getting fitter but I'm just not THAT fit yet that I can force my body to work out almost every day. Plus I also really want to make sure that I'm not over tired for when I trial sleeping with out the CPAP machine sometime next month.

I've been thinking about it a lot and it's quite a daunting notion. I think I may video myself sleeping and see what it looks like. I may also give the MAD a go as well with out the CPAP mask. This may be a good way to step down from the machine with out going it totally solo.

pain/tiredness/level
1/4/11

2007-01-22T01:41:00.000-08:00

Day 91

Pretty good sleep all week. Although in the last two days I seem to have slightly over tightened the mask so tonight I shall start from scratch and fit it properly.

I've been doing the singing for snorers pretty much every day. I'm now only doing CD3. I can certainly feel that it's really working my muscles quite hard so it will be a while before I feel comfortable that I'm ready to test my sleeping with out the mask.

I did have a sleep in the car during a 2 hour journey over the weekend (the joy of being the passenger), although I did snore, it fell much more gentle and more like a "normal" persons snore. I was woken a couple of times by my own snoring but not by choking during an apnoea attack. This is a great confidence booster that the singing exercises are indeed making some improvements.

pain/tiredness/level
3/3/11

2007-01-15T02:06:00.000-08:00

Day 84

As there is very little change day to day with my sleeping I'm not posting as often as I was when I was having problems. The humidifier has made a huge difference. The reduction in pressure is working well. The mask is not comfortable due to the reduction in pressure it doesn't have to be as tight as it was before. I'm back singing for snorers every day, well pretty much. I'm singing CD2 and having a go at CD3 as well so I'm singing for almost 40mins every day. Even my partner caught himself humming the tunes whilst we were at the gym the other day.

I went back to the gym again on Saturday and got drawn in to one of their classes they were running, even though it nearly killed me, I must admit it felt good to be back and burning of some excess calories. I'm also on my post Xmas diet and have lost 4 lbs in the first week. Only another 10 to go and I should fit back into all my clothes, but for the moment it really is a tight squeeze. Weight has an impact on sleep apnoea and therefore I have to keep it in check. It may be worth pointing out that my BMI is just 25.14, normal is considered 18.5 - 25 so you see that I'm only just overweight by .14

Pain/tiredness/level
1/2/11

2007-01-08T03:56:00.000-08:00

Day 67

Happy New Year!

Back to work today so this is my first chance to update my blog. I took the auto set machine back to the hospital on Friday over the last week, and mostly due to excessive drinking and eating ( I managed to gain at least 8 lbs!) my level went as high as 11.4)

So for the time being I will leave my machine on 11 and see how it goes. I won't be buying an autoset machine, as I felt it doesn't keep the level high enough to actually stop the apnoeas occurring. You have to have trouble breathing for the thing to kick in and take over. I'd rather keep an eye on the fixed pressure myself and adjust it manually myself.

I've not been very good at doing the singing for snorers over the holiday period, but I'm back into it at full swing and I'm also trailing the CD3 as well so I can hit that running at the end of the month.

Pain/tiredness/level
1/3/11

(I'll leave the level off from now on unless I change it)

2006-12-22T10:50:00.000-08:00

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

2006-12-19T03:00:00.000-08:00

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

2006-12-18T02:42:00.000-08:00

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

2006-12-15T03:41:00.000-08:00

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

2006-12-14T02:20:00.000-08:00

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

2006-12-13T01:46:00.000-08:00

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

2006-12-12T01:50:00.000-08:00

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

2006-12-11T01:30:00.000-08:00

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

2006-12-08T03:32:00.000-08:00

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

2006-12-07T02:58:00.000-08:00

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

2006-12-06T07:08:00.000-08:00

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

2006-12-05T07:23:00.000-08:00

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

2006-12-04T02:27:00.000-08:00

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

2006-12-04T02:04:00.000-08:00

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

2006-12-02T14:40:00.000-08:00

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

2006-12-01T03:25:00.000-08:00

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

2006-11-30T01:04:00.000-08:00

Day 28

28 Days later...... seen that film? It's a Zombie film based in London. I kind of feel like that in reverse. 28 days ago I could hardly stay awake for more then four hours at a time. Walking around like a zombie. Feeling like I was half dreaming half awake. That was 28 days ago when I sat down and decided to put my thoughts and trails down on a blog. More really for my own personal record, but if it helps just one other person then it's great that it's public too.

28 Days I've tried, the Mandible Advancement Device. It didn't seem to make a great deal of difference for me. Although maybe if my apnoea's weren't so bad it could have been more successful. I stop trying with the MAD after about 2 weeks. Then I managed to get an appointment with my hospital, they gave me a new mask which made a significant difference almost straight away. It still requires daily adjusting to make sure that I get the best fit every night, but that's a small price to pay. It's still hurting the bridge of my nose though, I'm going to do a search of the forums later and see if I can find out what other people have done to fix this.

I started "Singing for Snorers" almost a month ago as well. I'm just about to finish CD1 and move on to the more advance CD2. I've taken some advice and I'm going to continue to use CD1 until I've had enough practice on CD2 to be able to sing the exercises. I gave it my first go yesterday. Boy is it hard! I'm going to try and record my 2nd or 3rd attempt so that in 1 months time I can compare it, and see how much progress I have made.

I'm also now using the SAD Desk Lamp pretty much every day. I personally feel it's a great boost to my energy levels and really seems to be improving my mood as well. It's like a great cup of coffee with out the side effects.

I've tried some nasal dilators as well, but as I'm still using the CPAP machine it doesn't make any difference as far as I can tell as the machine inflates your nose anyway. But after I've been doing the singing exercises for three months then I may try the nasal dilators again with out the CPAP machine.

A good nights sleep last night, although I did wake 30 mins before my alarm went off and couldn't get back to sleep due to the pain on the bridge of my nose.

Pain/Tiredness
3/2

2006-11-29T01:24:00.000-08:00

Day 27

Yesterday I had to be up early for a conference call I was holding with some teams in Australia, Hong Kong, Tokyo and Singapore. Straight after that I had to rush into the office to meet with my boss and have a one to one with him. The rest of the day was spent in the office catching up with the people there and attending meetings and conference calls.

It wasn't until about 3:30 that I realised that I was having a very slight lull, but nothing a nice mug of coffee couldn't put right.

It's shocking how different my life is when the CPAP machine and Mask work properly. Just looking back at this blog you can see that I was at my wits end just a few days ago. Now everything seems to be coming up roses.

Last night I spent a few minutes adjusting the mask before sleeping and had another good nights sleep. The bridge of my nose aches a little but it's not as painful as the night before.

I've had an email from one of the guys who has had excellent results with singing for snorers , and he has recommended that I try to over lap the training section on CD2 with the exercises on CD1 for a few days to help the transition. I've not even listen to CD2 yet so I have no idea what is in store for me. But it certainly sounds like its going to be a challenge. I'm looking forward to giving it a go later.

pain/tiredness
1/1

2006-11-28T01:46:00.000-08:00

Day 26

I spent a few minutes adjusting my mask properly before sleeping last night and had a good nights sleep. No cats on the bed either so that was an added bonus. My nose was quite sore this morning though. I wish there was something that would help ease the pressure point on the bridge of my nose. It would make such a difference.

"Singing for snorers " is going well, I'm almost at the end of my first month. I wish I ha recorded my voice at the beginning so I could compare. But I was just too embarrassed. My partner took a sneaky video of my singing on his mobile phone so at least I'll have that. I think I'll try to record my last session of CD1 and my first session of CD2 and do the same next month when I move to CD3.

Pain/tiredness
3/3

2006-11-27T01:10:00.000-08:00

Day 25

Thank God! It looks like the extra time I spent adjusting the mask paid off. A pretty good nights sleep. Although my partner said I was huffing and puffing a lot during the night and kept tugging on the covers. I think I was having cat issues as they seemed to be taking up a loot of the bed. We've both agreed that if it happens again tonight then they will get pushed off the bed.

Pain/tiredness
1/4

2006-11-27T01:06:00.000-08:00

Day 24

Oh no! Another really bad nights sleep. I feel like I've taken 10 steps back. I'll go to bed early tonight and spend some time adjusting my mask properly before sleeping. I don't feel quite as bad as I did yesterday.

Pain/Tireness
2/6

2006-11-27T01:03:00.000-08:00

Day 23

Agggh! A terrible nights sleep. The mask was vibrating on my face almost every 20 mins so hardly got any decent sleep at all. I feel awful.

Pain/Tiredness
1/7

2006-11-24T02:56:00.000-08:00

Day 22

Good day yesterday. Felt really alert all day, only the usual lull in the afternoon when I used the SAD light to give me that extra boost that I needed. I went to the gym after work for about 45 mins. My heart rate was a little high again and I was having problems keeping in down in to the range that is recommended. I found it easier to do once I moved on to the bike.

I then committed the cardinal sin for sleeping problems, I had a drink of wine, a bit too much actually! So woke up this morning with a bit of a hang over and looking a bit like a panda! But I only have myself to blame there.

The mask caused discomfort again on the bridge of my nose, but it's no where near as bad as it was with the old mask.

I'm looking forward to the weekend and keeping my fingers crossed that I'll get a lay in. You never know miracles do happen.

2006-11-23T02:44:00.000-08:00

Day 21

Another good nights sleep. I'm really starting to feel the benefit now during the day. Yesterday after the dozy feeling faded, I was awake and alert pretty much all day. I had a little tiredness later in the afternoon, but this could just have been the after lunch sleepy feeling that most people get.

I have reduced the amount of coffee I have per day as well to just two. One when I get up and one in the afternoon to help me over that lull. Instead I've been drinking about 2 litres of very weak sugar free orange squash. It does mean I'm popping to the loo every 30 mins, but it's a lot better for you and an easy way of getting the recommended about of water intake per day.

Wow, I'm turning into a real health freak!

I've also recently purchased a S.A.D desk light , as I work from home most days and our home lighting is very subdued, I was finding it hard to work in such dim lighting. I've been using the lamp for about a week and it really does seem to have a good natural pick me up effect. It can also be dimmed and used as a normal desk lamp when you've used it on the bright setting for the suggested amount of time.

After speaking with the other guys that are also doing the Singing For Snorers I've orders some nasal dilators . Not that I think I have a particular problem with breathing through my nose, but as I said before, every little bit helps. My partner does actually suffer from chronic rhinitis so it will give him a chance to try them out and see if they help him too.

Pain/Tiredness
1/2

2006-11-22T01:34:00.000-08:00

Day 20

I went to the gym again yesterday evening, again only for 30 mins, but already I could see a small improvement. I managed to keep jogging the whole time without having my heart rate shoot through the roof.

I also slept really well last night. I'm sure this was also helped by the fact that I had no cats on the bed last night, the decided to sleep elsewhere for a change. I slept pretty much straight though, only consciously waking a couple of times to turn over. The mask only gave a slight and very short live pain when I removed it. Otherwise it was a great nights sleep.

Pain tiredness
1/3

2006-11-21T01:34:00.000-08:00

Day 19

Yesterday, even though I felt tired, I dragged myself to the gym at lunch time. I only wanted to do 30mins just to get the circulation going. When i was exercising before I did find that there was a marked improvement on my sleeping pattern as well as my general mood. I've not been for several weeks, and even then it was only once in a blue moon. I just used the running machine set on the auto fat burning, as I have a heart rate monitor it automatically adjusts the machine according to my fitness. I chose fat burning as the speed is slightly slower and I would like to loose about 4 lbs. Now I knew I wasn't very fit but I did have to laugh that after just 5 mins of jogging, the machine started bleeping at me telling me to slow down. This continued to happen through out the 20 minute workout that I had programed in. I pretty much ended up at a fast walking pace with sporadic bursts of very gentle jogging. I found it funny that I was so unfit that even this gentle exercise was pushing my heart rate so high so quickly. I can remember about 2 years ago when i was going to the gym 3 times a week that this type of exercise wouldn't have even been enough for a warm up! So I need to commit to going as often as I can to make sure my fitness improves.

Last night I slept really well. I did however have to have a nap at about 5pm. I think the gym really wore me out ! I woke up this morning with very little discomfort from the well adjusted mask. I still feel a little bit dozy but it's a fairly pleasant feeling, rather than exhaughsted.

Pain/tiredness
1/3

2006-11-20T01:38:00.000-08:00

Day 18

I spent a while adjusting my mask again before going to sleep last night. I worked great for the first 3-4 hours but then it began to leak at the bottom of the mask, after tightening it I slept OK, despite having most of my side of the bed taken up by two cats!

Also I've recently been in touch with the creator of "Singing for Snorers " who has very kindly put me in touch with a couple of her success stories. They both have written to me giving my their own hints and tips. Both of them have had staggering results from the exercises, but they are both very committed to doing them right, and doing them every day. So as long as I can keep up the program on a daily basis I feel confident that I will get some benefit from it. I'm not expecting a complete 100% cure, but even if it helps reduce my CPAP setting from 13 to something lower it will mean that my mask doesn't have to be as tight thus reducing all the other problems associated with it. As I explained to my friends over the weekend, I'm not expecting the world, but any improvement would be something to celebrate!

Pain/tiredness
1/4

2006-11-20T01:30:00.000-08:00

Day 17

Still now lay in, caused by a combination of discomfort from the mask and then having my cat pat my face to wake me up for feeding!

One thing I do know is that I rarely sleep on at the weekends anyway. I was just hoping that with the new mask it may have been possible. I have nearly 3 weeks off at the end of December and the first week in January, so hopefully that will allow my body to get in the holiday mood and relax enough to let me sleep that little bit longer in the morning.

pain/tiredness
1/4

2006-11-18T15:55:00.000-08:00

Day 16

Again, another fairly god nights sleep, even though I was woken a few times from the pain on the bridge of my nose. Time to have another go at adjusting that mask!

Also I'm disapointed to say I didn't get a lay in that I was hoping for, I woke at 7:30am and just couldn't get back to sleep.

So I've been fairly tired all day, and almost had a sleep during the afternoon but my partner and I went out to the cinema and did som food shopping instead. It's now 11:45 pm and I'm dog tired, so off to bed and give that damn mask another go.

Pain/tiredness

3/6

2006-11-17T08:20:00.000-08:00

Day 15

Not a bad nights sleep. Although I didn't go to bed as early as I should have done, it was about 11:30pm before I fell asleep. The mask was a little bit painful in the night, which woke me up a couple of times.

I'm feeling the tiredness more this afternoon than I have for a few days. That's most likely a combination of not going to bed until late and have to adjust my mask.

However it's Friday so the weekend is here, I'm hoping that I'm going to be able to have a lay in tomorrow for the first time in months. Normally the mask used to cause so much pain I had to get up.

The Singing for Snorers is going well, I'm not sure it's helping me sing in tune! However I do feel that the throat muscles are developing. I certainly felt that I was able to belt out the songs with much more power that I had previously. One thing I did notice, was that the source of the sound seems to be moving from being centred in my mouth, to much deeper in my throat. It sounds silly now thinking about it, but it seems to be actually coming from my voice box instead of the mouth. Which of course is really where it comes from, but now I can feel it coming from there.

Pain/Tiredness
0/5

2006-11-16T05:41:00.000-08:00

Day 14

Another good nights sleep and this time I did remember to adjust my mask properly before falling asleep. The result was just a light red mark on the bridge of my nose. No pain and it's unlikely that I'll be needing a sleep during the day.

Pain/tiredness
0/4

Just as a side note, I'm still doing the "Singing for Snorers" every day. As the course takes three months in total I'm certainly not expecting anything yet. Although I do feel that the muscles in my throat have been worked after I complete my daily exercises session. Even if it just improves it a little it would be worth the money.

2006-11-15T01:30:00.000-08:00

Day 13

I forgot to adjust my mask again last night. I really must do that. But even though I forgot, I still slept really well. I've taken some anti cold drugs to try and help fight it off and some pain killers before sleeping to ensure I wasn't in any discomfort during the night.

This morning I woke after a pretty good night. There is quite a red mark on my nose from the mask, but hopefully adjusting it tonight will relieve that a little. At least I'm not in any pain.

This is now the second night in a row that I've slept really well. Lets hope my mood swings start to improve!

Pain/Tiredness rating
0/4
(oooh no spelling mistakes again, maybe I should have a rating for that too!)

2006-11-15T01:26:00.000-08:00

Day 12

I forgot to adjust my mask, but I slept really well. I had to be in the office all day so there was no popping home for a sleep. But luckily I didn't need it. I was a little tired in the afternoon but normal people get that too.

Today was the first day in about 3 weeks that I've not had to sleep during the day.

I still have a lot of sleep to do to recover completely but this is a huge step in the right direction.

Although I was feeling like I'm getting a cold in the meeting, I hope that the better sleep that I'm getting will help keep that away.

(This is also the first post that the spell checker didn't pick up any spelling mistakes too!)

2006-11-13T02:01:00.000-08:00

Day 11

The frustrating thing about sleep apnoea, is one day you feel like its all starting to work and you feel like you have had a good nights sleep. Then the next day (like today!) you wake up feeling and looking like death.

I thought I had a good nights sleep, although I did wake early as my mask was hurting me, I think I need to adjust it properly tonight, as the straps may have loosened a little after the first couple of days use.

I really am very tired though :-(

Pain tiredness.
Upon waking 5/5
Now 3 hours later 0/8

2006-11-12T03:00:00.000-08:00

Day 10

WOOHOO!!!

Not only did I sleep all night which was wonderful, I woke with only mild discomfort from the mask. I woke a couple of times in the night and needed to adjust the mask slightly, but nothing to worrying. The best part is that I slept for 10 hours!!! This is almost unheard of unless I'm on holiday. What's even better was that in the afternoon, I was able to sleep for another 2 hours! My body was clearly doing it's best to catch up on all the sleep deprivation I'd been going though.

Last night was just as successful too. I went to bed around 11pm and although I woke at 3 am feeling very ill, I think that was just a bad bottle of wine I'd had during dinner, as I really didn't drink that much but was feeling very poorly. I went into the living room for a while and laid down there after taking some pain killers. After about an hour or so I woke my self up snoring and was feeling much better. So I went back to bed and refitted the mask.

This morning I woke at about 10 am. Despite the hour or so feeling very ill in the night, I feel like it was another resounding success.

As it's Sunday I will take things easy today and will try to go to the gym later. With all this sleeping I was to make sure I burn off some energy, otherwise I may find I can't sleep at night!

2006-11-12T02:51:00.000-08:00

Day 9

I went to the Hospital yesterday. I made sure I was upbeat and charming to the nurse. I explained I was having a horrible time and the position of the leaks. She said that my mask wasn't tight enough. I should her my mask and she replaced it with the most up to date version that have better straps and a proper head rest. I also asked her about the possibility of get a auto sensing machine that adjusts to you own personal need through out the night. She said it was unlikely that the NHS would pay for on as they are three times more expensive that the normally fixed ones they supply. So I said, what if I was willing to pay for the machine? To which she said that would be no problem at all. But she did recommend that I try on of their loan auto set machines for a week first to see how I get on, as they don't suit all types of apnoea. So I'm going back on Tuesday to pick up my loan unit and give that a go for a week.

I came home from the hospital full of hope that I was finally going to start getting some proper sleep again. So I went straight to bed and settled down with the new full face mask and slept for the full hour. When I woke there was mild discomfort but no pain at all. Of course one hours sleep wasn't going to make a lot of difference, especially after all the sleepless nights I've had recently. But on my scale it was a 0/6.

I can't wait for tonight to see if I can sleep all night

2006-11-09T23:16:00.000-08:00

Day 8 - Updated

I tried to get back to sleep after waking last night at around 2:30am. I was so stressed and upset about my partner sleeping in the spare room I just couldn't sleep. I sat up for a while and played some Xbox to try and relax me.

Soon I noticed it was beginning to get light, as I was also beginning to feel sleepy again, I went back to bed.

Two minutes later my alarm clock went off at 7am.

With all the problems the mask caused last night I think I got a grand total of between 2 and 3 hours sleep.

I feel sick, I have a head ache an pretty miserable right now.

I can just see myself at the hospital later today, crying, begging for her to help me.

2006-11-09T19:12:00.000-08:00

Day 8

Well it's still the middle of the night actually. 2:55 am as I type now.

For the first time in 5 years I've woken to find that I'm sleeping alone. My partner has elected to sleep in the spare room.

No because of my snoring, or my Sleep Apnoea causing sudden gasps of breath, oh no, he's sleeping in the other room because no matter how carefully I fit my face mask, the slightest movement of my head, or change in pressure caused the mask to vibrate on my face causing a sound not dissimilar to someone playing a small trumpet.

I no that in the 4-5 hours that I have been trying to sleep, I have been woken by it 10-15 times. Which is almost getting to the point where it's comparable to the amount of times I was being woken by my sleep apnoea attacks. Of course the trumpet is no where near as dangerous as its just making a noise, where as the sleep apnoea was starving me of oxygen.

However, it's having the same effect on my partner, and the same strain is being put on our relationship. Neither of us are sleeping properly at night and during the day both of us (me in particular) aren't dealing well with the sleep deprivation.

This is a living hell.

I look forward to my hospital appointment in 7 hours time.

Lets just hope I manage to get at least a couple of hours between now and then. Just so that I don't rip the head of anyone tomorrow.

Pain/tiredness

0/9

I feel like crying

2006-11-09T08:03:00.000-08:00

Day 7 - Updated

I've really been on a tiredness roller coaster today. One minute I feel dog tired and ready to drop. The next I'm wide awake and wondering if I've drunk too much coffee.

I tried to have a sleep at lunch time today. I worked on getting the full face mask just right and was able to fine tune it within 10 minutes. A slight movement of my head would result in the mask leaking or vibrating. I was able to adjust my head every time in to a position that stopped the leaking and vibrating with in a few seconds. I was so impressed with the results I don't think I actually slept for more than a few minutes. There was no pain or discomfort to speak of when I got up again.

Hopefully with more practice I'll get faster and better at adjusting the mask.

Today I also received my copy of "Singing for Snorers" which is a pack of three CDs that have singing lessons designed to reduce snoring caused by lax muscles in the upper throat. I've heard before that singing can help, I hope that the fact that these lessons have been created with that specifically in mind will give me some added benefit.

2006-11-09T01:33:00.000-08:00

Day 7

Yesterday, I couldn't help thinking about what Peter said, who commented on my posting Day 3. " If you are getting pain from wearing your mask then it is fitted incorrectly!"

So during my lunch break I went to bed and loosened all the straps to my full face mask. Turned on my CPAP full blast and very slowly and carefully adjusted each part of the mask until the mask had inflated and sealed itself around my face. This took a good 20 minutes to do. Once in place I fell asleep for about 30 minutes.

When I woke, although I didn't feel particularly refreshed as I didn't actually sleep for that long, I didn't have the pain that I normally would using the full face mask.

So last night I tried to give it another go. Once again I had to turn my CPAP on full blast and slowly but surely adjust the mask. This took well over 30 minutes. I was constantly fighting between air leaking in steady streams to sudden vibrations that intermittently occur. Eventually I thought I had it just right and drifted off to sleep.

Throughout the night I woke at least every hour, if not every 30 minutes. Needing to adjust the mask some how, mainly just moving it around my face to get the best fit or tweaking the straps a little here and there.

So again I've had very little sleep, but the small amount of discomfort I had upon waking (it couldn't be described really as pain) went almost as soon as I got up.

0/8 on the pain/tiredness scale.

I slept without the MAD last night to try and give the full face mask a chance to fit right.

2006-11-08T01:47:00.000-08:00

Day 6

Some good news first, I finally managed to speak to a technician at my hospital. I explained that it had been over a year since I last saw her and that I wanted a humidifier and also to have a general check up. So she has given me an appointment for Friday. Which in UK NHS terms is nothing short of a miracle.

The Bad news, I had a very bad night last night. I wore the MAD and this time the full face mask for my CPAP. I spent several minutes before going to sleep, carefully adjusting the mask whilst the CPAP was set at full pressure. Once again I fitted the lower part of the mask no problem, but if the top part is attached to gently then the mask leaks out of the top sides of the mask. I'm sure if I had cheek bones to speak of then this would have prevented the leaks. However I don't, but I do have a small chin and a rather large nose, add that to having no cheek bones and the full face mask just doesn't fit me. Unless I tighten it, a lot! Which is what seems to be the cause of the agony that I suffer each time I try to use it.

I woke every 2 hours or so in a lot of pain. If the pain didn't wake me then the poorly fitting mask would begin to vibrate as it leaked out the side, ensuring that I had as little sleep as possible.

During the night my pain was easily hitting 8 if not 9.

This morning I'm at 2/8. Just to make things worse my poor nights sleep has also given me a twitch in my left eye.

2006-11-07T06:09:00.000-08:00

Day 5 - Updated

I wasn't sure if was really tired enought to sleep during my lunch break, but I thought I'll give it a go and if I can't, then maybe I slept better last night than I thought I did.

I fitted the MAD and nasal mask, within a few minutes I did drift off to sleep. I've notice that during my lunch time naps I sleep almost perfectly using the MAD and nasal masks. It's only during the night that I seem to have the additional problems of dry mouth/excessive saliva/pain and discomfort. I slept very well for 40 minutes, woken briefly by my cat deciding to join me and sleeping on my legs. Much shorter than I was normally sleep for during the day, but this could be simple due to my furry little friend.

If I continue to have mouth breathing related issues tonight then I think I will give the full face mask another go. The main problem with Sleep Apnoea is that every solution is different for each person, so I do believe that my trail and error method of resolving it is probably the best way forward.

I recently contacted the hospital sleep clinic to ask them for a humidifier which they promised me last winter but never supplied it. I've now left three messages on their answer machine (they never seem to answer the phone themselves). They did call me back once asking me to call them again, which I did clearly explaining what it was I wanted so that they shouldn't need to keep playing voice mail tennis. Instead they just never called back again. I'll continue to try and speak with them and tell them about the problems that I'm having as well. The last time I told them I was having issues with the full face mask, they just blamed it on the fact that I have a goatee beard and that I should shave it off. I tried to explain that it wasn't leaking at the bottom of the mask but at the upper sides, but it was met with very little interest. I'm convinced that due to my slightly receding chin and generously proportioned nose means the full face mask just doesn't fit my face well, no matter what I do. Ultimately it means I have to have the mask tied much tighter than the nasal mask, but with the nasal mask my CPAP machine which is set at 13cmH2O just starts blasting the air out of my mouth after a few hours of sleep. This ends up creating the terminal halitosis the following day as well as keeping my partner up with all the strange noises caused by the air rushing from my mouth. Not to mention the pain from the dry mouth. I'm also sure this really can't be helping my Apnoea at all as there is no pressure being directed towards my airways as it's all rushing out of my mouth. (End Moan)

2006-11-07T02:18:00.000-08:00

Day 5

Last night I wore the MAD and the nasal mask for the CPAP. I pretty much slept all the way through. The few times I did wake briefly were because I was being tapped on the face by my partner as I was trying to breath through my mouth and making funny noises. I also woke once and found excess saliva dribbling down my face, but the next time I woke with a very dry mouth and had to rub my tongue around. This was a relatively successful night. Although I still think that if the MAD fitted tighter then it would improve my mouth breathing problem. But I'm really not sure.

When I did wake at 7am I removed my MAD and had a shooting pain in the left side of my jaw. Almost like it had been dislocated during the night. My teeth also felt a little numb. I took some pain killers and the jaw pain has pretty much gone. My teeth still feel a little tingly 3 hours later.

So upon first waking my pain/tiredness was 8/6
Now three hours later this is 3/5

2006-11-06T05:53:00.000-08:00

Day 4 - Updated

I had another look at the MAD (Mandibular Advancement Device, which is the correct name for what I was calling the Mandible Extender), I was able to remove the plastic that I had used to block the hole at the front of the device. I gentle prised it out with a knife without damaging the surrounding plastic. I went back to sleep at 12:30pm during my lunch break. Wearing both the MAD and the nasal mask for the CPAP machine. It took me a few minutes to get to sleep, but slept well for the whole hour without turning. I was woken by the phone ringing so was delighted that I had no excessive saliva and was pretty much pain free!

15 minutes later there is no pain at all.

0/4 on my pain/tiredness scale.

Now if only I could have a whole night like that over a few nights it would be the result I was looking for.

2006-11-06T03:07:00.000-08:00

Day 4

As I feared, the Mandible Extender didn't fit tightly enough after my second remold. I woke in the night at about 1am with a bone dry mouth and ME just hanging off my lower jaw.

I got up and rinsed my mouth with some water to try and get it back to normal so that I could swallow and think what to do next.

There was only one thing for it, to remold the ME for the third and final time. (The instructions state you can only mold the ME three times)
This time I also decided to block up the air hole in the front of the ME to try and force me to breath though my nose and there by using the nasal mask and CPAP machine as much as possible. I boiled the kettle and quickly heated and fitted the ME device. Using a mirror this time to ensure it was placed correctly in my mouth, pulling my jaw forward enough to ensure it was effective yet firm fitting, whilst still being comfortable to wear.

Looking back I wish I had thought of using the mirror the first time round.

I went back to bed and settled down. It was definately tighting fitting and I could feel that my jaw was being pulled forward enough. It ached a little but not so much that I couldn't sleep.

During the night I work a few times with my lips vibrating as the air hole was now blocked in the front the only way the excess air pressure could escape was around the sides. This caused a slight trumpeting sound and caused my face to vibrate. Maybe blocking the hole wasn't such a good idea after all :-(

The rest of the night was spent being woken by the vibrations in my face and finding copious amounts of saliva dribbling down the sides of my face. Not great at all. I'll try to see if I can recreate the central hole in the front. If I can't do it with out causing serious damage to the device, I'll wait until my second one turns up.

Upon waking my pain/ tiredness was 6/7. Now a few hours later the pain has pretty much gone but the tiredness is pretty much the same.
1/6

2006-11-05T10:05:00.000-08:00

Day 3

Yesterday I goofed. We went away to visit my partners parents for the weekend, staying overnight. I took my CPAP machine and nasal mask, but managed to forget my Mandible Extender. I spent most of the night sleeping with my mouth slightly open so all the good work the CPAP machine was trying to do was wasted. I woke in the morning at about 7am. My mouth was bone dry and I'm sure I had was could only be called terminal halitosis!

My partner complained about the noises I was making and woke me a few times in the night by tapping my mouth to try and get me to shut it. Needless to say I didn't get a good nights sleep again.

We left them and went to visit a friend who lived about a hours drive away. I felt very rough, tired dehydrated and just not really up for social conversation. After about an hour I had to suggest to my partner that maybe we should make a move and go home. On the way home he said he was surprised that I wanted to leave so soon. So I tried to explain that I wasn't feeling well and that I was tired. I reminded him that I was still having problems with my sleeping disorder and that was the reason.

Once home, we relaxed for a few hours after which I went to bed for an hour. I fitted the ME and slept like a baby for the full hour. I woke feeling refreshed and comfortable. I didn't wear the CPAP Mask so no pain from that, and the mouth piece was very comfortable. I could feel it in my mouth but it wasn't an unpleasant feeling, more like my teeth and gums were having a gentle massage. If fact it was quite nice!

I then decided that as it was so comfortable that I would risk remolding it to pull my lower jaw just a little further forward. I knew it would be risky but I also thought that is I make a real mess of it, I do have another one on order already so wasn't too worried. I heated and molded the ME again and set my jaw slightly further forward. I'm not sure that the suction is now quite as effective as it was before so I may have trashed it. But one thing is for sure, this is definitely a step in the right direction.

Pain/Tiredness rating

1/4

(Very mild headache from the poor nights sleep)

2006-11-04T00:50:00.000-08:00

Day 2

So last night I first tried just sleeping with the Mandible Extender (ME). As I drifted off to sleep my partner woke to tell me that I was gently snoring. I had asked him to do this so that I could put on the CPAP mask as well.

I've changed to just a nasal mask as I'm convinced the full face mask simple aggravates the problem by forcing my chin back even more.

I woke up only a couple of times during the night but otherwise slept much better that the night before. The mouth ache went after about 1 hour of waking and removing the device. The face pain from the mask was much less from being able to use the nasal mask. It's much lighter and therefore doesn't need to be strapped on so tightly. Although it still feels like it's cutting into the top of my nose after wearing it for 8 hours straight.

I'm just going to try wearing the ME and the nasal mask for maybe a week or so, until I'm pretty much used to the device as possible. Then I will think about adjusting the device again to bring my lower jaw further forward.

At the moment my life seems to be a balance or pain and tiredness. Managing these two is a constant battle of adjustments and guess work trying to find the perfect solution to minimize them both.

I think I should start using at out of 10 factor for both:-
pain/tiredness where 10/10 would be in agony and if I closed my eyes for just a second I would fall asleep
At the moment, after being awake for 1.5 hrs I would put my self at 2/5, meaning I have minimal pain and I feel tired enough that if a lay quietly for about 30 mins, I may fall asleep.

Pain
0 Pain free
5 Moderate Pain - Pain killers may be required
10 Throbbing agony - Sleep impossible - Unable to wear Mask / Mandible device

Tiredness
0 Bouncing off the walls - May need to cut down on the coffee!
5 Relaxed - Maybe a little dozy - Full sleeping may not be possible
10 Closing eyes for just a few seconds will result in falling into a deep sleep

2006-11-03T08:44:00.000-08:00

I had to have a sleep at lunch time. After the struggle I had sleeping last night it came as no surprise. So I set my alarm for 1 hour and fitted the Mandible Extender (ME).

It too only a few minutes for me to get over the initial discomfort and drift off to sleep. I say drift off, I could have easily have said passed out!

The next thing I new my alarm was ringing. I couldn't quite believe the hour had gone already. I felt extremely drowsy and it took a few minutes to realise that it had been a full hour.

The good thing was that I didn't once wake myself up gasping for air, which I would normally do if I slept un aided. Also there was no mask pain, air leaking or any of the other annoyances that are associated with using the CPAP machine and the full face mask.

I still feel like I could go back to sleep. But I'm feeling really positive that tonight I will have a much better night and will be able to wake up in the morning feeling refreshed for the first time in months.

The Sleepy saga continues!

2006-11-03T03:01:00.000-08:00

Day One - The Mandible Extender

Well This is the first morning after wearing the Mandible Extender for the first time. I didn't get a great nights sleep but I guess that is to be expected for a while.

I molded the ME yesterday, it took a couple of goes to get a good fit. I'm not sure that I have pushed my lower jaw forward enough for it to be effective, but as I can reshape it one more time I thought I'll try it for a few nights and get used to it before adjusting it any more. I certainly don't want it so far forward that it becomes unusable.

At first I slept with the ME in and my full face mask on. I fell asleep around 10-10:30pm and slept right though to 1am. At which point I woke up in a lot of pain. Not just from the mask, which is normal, but also from the mouth piece. I tried to get back to sleep but it was just too uncomfortable, and all I could think about was this great big chunk of plastic in my mouth. I got up for a bit and had some hot milk to try and relax me a bit and help me back to sleep. Removing the mouth piece for about 10 mins also helped, but I was determined to wear it all night. I went back to sleep and woke again at about 2:30am. The mask was as painful as ever but the mouth piece was just causing a dull ache, so I decided to try with out the mask. I've not deliberately slept with out the mask for 5 years, so it was a big step.

The rest of the night I still kept waking almost every hour from the discomfort of the ME, but it was never so bad that I couldn't get back to sleep again. Even though I wasn't wearing the mask I felt like I wasn't snoring. As my throat wasn't sore either this seemed to back up my notion. I asked my sleeping partner if I had been snoring but he couldn't confirm or deny. He could only say that he wasn't aware of me snoring. That normally means that if I was snoring, then it wasn't as bad as when I normally do, it sounds like someone drilling concrete!

The pain from the ME has now all but gone and of course as I took the mask off earlier there is no painful red mark on my nose either. Of course I'm still feeling tired but it's given me hope that I may be on the right track to an alternative solution to the very painful full face mask/cpap machine.

Fingers crossed!