Initial Problems ?

[terrymatth]

I was diagnosed with sleep apnea and tests proved that a loaned CPAP machine was solving the problem despite the fact that I still often felt tired when I awoke and during the next day. I now have Resmed S8 Autoset Spiritand with humidifier have been using it for about 2 months. Quite regularly I still wake up exhausted and I have had 2 bouts of colds/flu since I started the using the machine. Has anyone else experienced similar problems ?
thanks terry

[Joe McManus]

Hi Terry, thanks for joining!

What you describe is not unusual. Exactly why this happens may be for doctors to answer but we have discussed 'sleep debt' where we surmised we can't expect CPAP to undo all the years of sleep deprivation right away. When you weren't sleeping well, your organs will have suffered because of the lack of oxygen and reduced time to self-repair during the night. This damage won't be instantly reversed by CPAP, not even in 2 months.

There is also the topic of nutrition. If you aren't putting in the right fuel, you can't expect the 'engine' to come up with the power required to keep you going all day. See this blog post for some pointers which may help you too:

http://blog.cpap.co.uk/2007/09/nutritional-advice-for-sleep-apnoea-patients

[flyinpete]

I thought a few notes from when I became a hose head might help!!

The first night was definitely no fun, waking many times through the night with my heart racing, and feeling like I was not getting enough air, I really felt like I was seriously ill.

The machine said I used it for over 9 hours, but I honestly feel like I saw every minuet of each of those hours. In reality I think I slept quite a bit, but felt terrible in the morning. I felt distraught that my long awaited “cure” to my years bad nights and tired days was not a cure at all, and in fact making me feel worse!!

I am sure the experienced hose heads here will recognize these feelings!

I entered my second night with a feeling of trepidation and to be honest fear, the feelings I had felt the night before were very scary. I have been diagnosed as having mild sleep Apnoea, but the main problem for me, or I should say my wife was my snoring. My specialist had said to stick with it, and they would review my situation after 3 months!!, but 3 months of nights like I had just gone through….NO WAY!

The next evening I was absolutely shattered and falling asleep on the keyboard for some reason I did not want to go to bed!!

I had posted some enquiries on a fourm and was amazed at the responces I had back, giving me invaluable suggestions, and most of all support.

Anyway off To bed I went, having changed the low/basic air setting from the default setting of 5 to 6 and turned the humidifier up a couple of notches. What a difference!! I slept reasonably well, I still woke a few times during the night, but did not have as many “breathless” feelings and the panic of waking to find a gale blowing through the mask started to subside.

I can understand how people who use CPAP machines have problems getting used to them; I have never used one and have gone straight to APAP as I purchased my own machine. I had read some words on here and for the life of me can’t remember who said them, but you know who you are, that said “you have to go with the flow – just relax” and it does work. Once I had checked that the Spirit was not running away and only blowing at 10, did I settle back and just breathe with the machine.

The second night was still no great improvement on my well being, but a vast improvement on the first, I now felt I could continue.

The third night I increased the lower pressure setting again, this time to 7.and limited the HI setting to 14. This works for me, you will need to discover your optimum.

I decided to re-adjust the mask as it had felt like it was leaking the night before, although the Spirit said the leak rate was only 0.22 it was just annoying little leaks, especially around the nose. I have two problems with wearing a mask, the first being a broken nose from playing rugby, and the other is my aversion to shaving, leaving me with what the Royal navy calls a “Full Set” (beard and moustache).

I had raised a few questions on some of the forums about my flavor saver and with the information I gained and the trial at ResMed (they sell direct in the UK) the Aptiva was best.

With the changes made I settled for the night, and was asleep within seconds, I woke many times feeling that the mask was leaking, and fiddled with it before going back to sleep. I awoke on Friday morning feeling just OK, not stunning, but the worst thing was a Sinus head ache. I spoke to my Doctor who recommended trying a medication called “Beconase” (Beclometasone Dipropionate) this is an anti-inflammatory medication used for allergy relief. This is available from most UK pharmacies, but he told me it takes a few days to start to work, and several weeks to take full effect.

The most important thing for me after the third night was not how I felt in the morning, but the fact I did a full day’s work without the usual afternoon tiredness, and even more surprising was to sit and watch TV without going to sleep.


The fourth night I changed the mask adjustment again, by tightening the head strap and loosening the lower straps. I had tried altering the angle, but one setting has the mask too close to the bridge of my nose and the other just a bit too far. I am using the one that is just a bit too far as this leaks less.

I went to bed very late for me after watching a film on TV, and after remembering to kiss the wife BEFORE putting the mask on I was soon asleep. Apart from waking with an annoying cough at about 3am, I slept staring though, and can only remember turning over a couple of times. I woke this morning with the same Sinus head ache, but feeling high, WOW is this how everyone feels after a good nights sleep!!

The strange thing about last night was that the mask leakage was the worst yet at 0.32, BUT I did not feel like it had leaked any more than previous nights. I think there is a moral to this; find a place where the machine says don’t leak, and as long as it’s comfortable LEAVE IT ALONE.

My readings for the last four nights make interesting reading (yea I know I need to get a life) the first three nights showed basically the same with an AHI of around 9 mostly coming from HI readings of 7.5. Last night the readings dropped dramatically to an AHI of 4.8 and the AI to only 0.1.

I am happy I chose the APAP route, even though the health professionals said I should go with CPAP. They seam to think that APAP is just for special circumstances and perhaps if they started people on APAP and THEN moved to CPAP if needed more people would accept this strange treatment far easier.

I have only used two masks, the first was on a trial machine and was not branded and I have no idea who made it, but it was terrible, and the Aptiva. I have no problem recommending the Aptiva, as it works for me, even with a broken nose and moustache.

As I have never used any other machine I can’t compare the Spirit with anything, BUT its easy to use and set, very quiet, and the built in humidifier is simple, compared to the separate one my friend showed me.


The first night to me was frightening and I wish I could have had the slight adjustments made to my machine at the start, but with hind sight I have now learned and understand how I respond to the treatment and how the machine responds to me, and in future if anything changes I will be able think it through far easier.

I mentioned earlier about changes to the low and high pressure settings on the APAP. The higher low pressure setting realy helps me as when the pressure drops too low in the night I feel like I am not getting enough air. The high presure setting was limited to 14 as I discovered my initial machine would occationally run away with itself, so dropped the pressure to make sure this did not happen.

I have now been on APAP for over 4 years, sleep on average 8 hours a night with an AHI or 4 - 4.5. I have just brought a new Resmed S8 Spirit 2, just an amazing little machine and have settled into the life of a hose head. Yes I still wake up several times a night when I knock the mask or the house gets in the way, but I have a life back and can work.....something I was struggling to do before.

Stick with the with challenges of CPAP it does work....

One final thing we are here if you need help, and if things get bad and you need a chat... like I did, you can get through it the help of the many friends on here……Just Ask

Peter

[chelseauk]

Not had problems with colds - but still waking up tired..

See http://forums.cpap.co.uk/showthread.php?t=250

Oh yes..

[puffin]

Great post Peter, like most of us, a few problems when starting out. Most problems can be solved very easy. But in the end it is always worth the effort getting it right. Yes I do get the odd night where my sleep was "pants" for want of a better word, but I do sick with it as the long term benefits out weigh pre-cpap.

[PowerNapper]

Hi Pete

Great message and I am sure it will be of help to many of us.

You mentioned how you changed the settings on your Spirit, are you also able to adjust the Spirit 2? I have been lucky enough to have a Spirit 2 allocated to me by my sleep centre. I have tried contacting ResMed to see how I could get the computer connection hardware and diagnostic software but they informed me that these are only supplied to clinics. Is there another way to get the statistics and make adjustments?

Thanks,
PowerNapper

[Andysee]

Great post Pete.
I hope you keep having as good results with your Spirit II. I am very happy with mine. I'm interested, like powernapper, in getting diagnostic equipment and software as I think if I've got the machine I want to get the most out of it. If you (or anyone) knows where to buy it let us all know>

Best regards
Andy

[flyinpete]

The settings are the same as the Sprit 1 and roughly the same as the old S6 APAP machine, and the clinical manual is posed on here http://forums.cpap.co.uk/showthread.php?t=254

PLEASE do not go crazy.

The software is available from several internet sites over in the US, but is VERY expensive....$230 as you need the card reader to go with it.

check here, the will ship to the UK.

http://www.cpap.com/productpage/ResScan_Version_3_3_Software.html

BUT ITS NOT COMPATABLE WITH VISTA!!

Peter

[terrymatth]

Thanks very much everyone for the responses and they have given me plenty of options to try and resolve the problems

Terry