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Sleep Apnoea Forum Bringing Help + Support to the Patient

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Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers. 

Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation.  Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.

 

Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...

 

Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum.  Don’t be shy in posting and sharing, as we’re all in this together and to help each other.

Best Wishes for good sleep!

Kath

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This is sounding good after just one night Wanda - keeping it on for 5.5 hoursEven when we have found the mask that's suitable for us, we still have to spend a few nights getting it fitted just right, and from time to time need to re-adjust it as the elastic starts to stretch a little.

Good advice from Mary, which I've seen before, but never tried myself.  I don't even know if they sell that over here.

I would get yourself a Hose Lift Wanda, as they're worth their weight in gold, and even have a hook to hang your mask on to dry once you've cleaned it.  The good news for you is that the manufacturer is where you are in Texas so you should be able to buy it direct at www.ardeninnovations.com

The position of your machine is very important if you're using a humidifier.  It's also handy to have it as below your bed height so you can lean over and see the LCD screen if you have one on yours.

Good luck for night 2.....

Wanda, I may have forgotten to tell you there is a lot of trial and error involved in this and there are good nights and bad but also remember each night is a different night, will send you a message on DS.

Thanks Mary, I appreciate the information.
 
Mary Zimlich said:

Wanda, an old tried, but true method which does work is a silicone seal.  You use silicone earplugs (in the US the most common brand is Macks, but many stores have their own brand).  You take several of the earplugs, roll them in your palms until soft and pliable and fashion into a string the diameter of a pencil.  Place this string of silicone (you will probably have to use more earplugs, but I use a few at a time until I have what I need) around the perimeter of the mask where it meets your face and use slight pressure to secure it in place on your face.  The downsides are you can't do much adjusting of the mask with the silicone.  Also, the first seal should last two nights- the second night I would score the silicone with a pin to inprove stickiness.  Then in the morning I take it off the mask, roll it into a ball and put in an airtight container to use again and again until worn out

I just leave the tubing on the machine and the mask on top.  I clean the mask with a cpap wipe every day.  If it's dusty or something may get on the mask storing it in the bag is fine, in fact it's a good hygenic idea.

Good luck, thanks for posting. Also if you look at hose hangers if your husband is handy he could probably make you one.  Or heck, just hang a  string from the ceiling.

Thanks!

Terry Vella said:

Wanda, I may have forgotten to tell you there is a lot of trial and error involved in this and there are good nights and bad but also remember each night is a different night, will send you a message on DS.

Kath,

 

Thanks I was a little proud of how things turned out.  I checked my data after I sent you the posting.  My AHI was 4 and 90% was 10.
 
Kath Hope said:

This is sounding good after just one night Wanda - keeping it on for 5.5 hoursEven when we have found the mask that's suitable for us, we still have to spend a few nights getting it fitted just right, and from time to time need to re-adjust it as the elastic starts to stretch a little.

Good advice from Mary, which I've seen before, but never tried myself.  I don't even know if they sell that over here.

I would get yourself a Hose Lift Wanda, as they're worth their weight in gold, and even have a hook to hang your mask on to dry once you've cleaned it.  The good news for you is that the manufacturer is where you are in Texas so you should be able to buy it direct at www.ardeninnovations.com

The position of your machine is very important if you're using a humidifier.  It's also handy to have it as below your bed height so you can lean over and see the LCD screen if you have one on yours.

Good luck for night 2.....

Kath,

 

Thanks for the link.  My second night was much better than the first I slept from 11:00 P- 8:30 A.  I did have some leaks around my mouth but I was able to reposition my mask slightly and once slightly tightened my bottom straps. I also did most of my adjjusting while I was laying down in bed. This evening my eyes feel a little dry.  I have been suspecting that I am having small leaks near my eyes.  So Night 3 I will focus slightly on my eyes and continue adjusting for my big issue around my mouth. When I got up this morning, I felt much more alert.

This is sounding good after just one night Wanda - keeping it on for 5.5 hoursEven when we have found the mask that's suitable for us, we still have to spend a few nights getting it fitted just right, and from time to time need to re-adjust it as the elastic starts to stretch a little.

Good advice from Mary, which I've seen before, but never tried myself.  I don't even know if they sell that over here.

I would get yourself a Hose Lift Wanda, as they're worth their weight in gold, and even have a hook to hang your mask on to dry once you've cleaned it.  The good news for you is that the manufacturer is where you are in Texas so you should be able to buy it direct at www.ardeninnovations.com

The position of your machine is very important if you're using a humidifier.  It's also handy to have it as below your bed height so you can lean over and see the LCD screen if you have one on yours.

Good luck for night 2.....

Wwanda, I would buy eye drops in the short term and squirt them before bed and in the morning, once you get the straps right you wont need them anymore but you dont want your eyes drying out. I know you are buying a few things but you can already see what benefits you get. Most people get that rush the first full day of CPAP, it seems to then go back for a while while we heal then you get that alertness back permanetly but it takes time so if you feel it going backwards dont worry. 

I would have waited a few more days for another report but my face did not survive last night.  I had a hard time falling to sleep too.

.  My face did not survive I have marks on my forehead like the previous 2 nights but maybe deeper.  (I had a facial; yesterday afternoon so maybe my skin is a liitle more sensitive though I had a sensitive facial).  What is new is that  I have  marrks along side the parentthes of both sides of my mouth and a red spot near my nose, a strap mark on the right side of my face and lastly what is new is that I have  a break on the bridge my nose.  This is my assessment of what I did different and probably need to change for tonight.  BTW, I only had 1 leak near my mouth that I adjusted and that was that.  I had a couple of small leaks near my eyes about 3 times so I thought I was doing better with the mask.  The seal was much better

1.  I reviewed the Res Med video for putting the mask on.  They had you putting the mask on in a mirror and then laying down When I did that I think I tended to concentrate on getting away from my eyes more so I think that is what happened in terms of putting it on too low on my nose. I had the dial on 24 instead of 21. I had a pretty good seal but boy my face.  I ordered mask liners and therapy cream last night.

My plan for tonight is to continue doing a combination of what I have done the first night and the second night. As much as I possbily can I am going to lay down and put on the mask try the instructions from a blog called Mask Disarrayed-  Taming the Quattro.  I did some of what was in that blog the second night and had better results than the first night but not the kind of seal I had the third night.  From the taming...blog it says the quattro should glide on your face.

I realize this is all trial and error and will continue to keep trying and staying positive as failure is not an option.

Hi everyone.
I have been putting stuff on the Facebook group pages and thought I'd like to write on here too.
Until quite recently,when speaking to a guy in the pup (West Riding at Dewsbury railway station) I had never heard of sleep apnoea. After then speaking to my wife,Marilyn,it was suggested that I'd had the problem for at least all our married life since 1976 !
Perhaps I've had it all my life !My mum says I was always a good sleeper as a youngster.
I remember a snoring problem as a teenager.My next youngest brother once put a wet facecloth over my face and I woke up thinking I was drowning ! My youngest brother once threw his sports bag across the bedroom in my direction.As the bag was in mid-air he realised that his football boots were still in it ! A painful awakening this one.
Mandy's the time my wife has moved out of bed and slept downstairs.Otherwise,I might have stayed downstairs rather than disturb her sleep.
If I was not in the same bed though she could not count how many seconds I might stop breathing for.
After reporting sleep apnoea to my GP I was treated fairly quickly.
The sleep test originally showed that I stopped breathing up to 35 times in 1 hour so how could I ever have had anywhere near enough quality night time sleep in all those years ?
I was always tired in the daytime and would blame this on many things apart from the lack of sleep ;
A good night boozing
My body clock changing to cope with shift work
Being in a warm place
The boredom of bus travel

I could sleep anywhere !

Cpap treatment has made such a difference ! I have more energy,I do not feel tired in the daytime,I feel less irritable !(I think so anyway).
I am sure earlier treatment may have prevented a heart attack at 42 years old (I'm 58 now),and might have prevented many arguments at work.I might have even progressed further in my job.
As it is I have recently taken an early retirement package from Fox's Biscuits after nearly 34 years with them and am looking for a little job to eke out my pension.
Enough for now...don't want to bore you any more !
'Bye for now and I hope everyone has a Merry Christmas !

Not at all boring Steven. I think reading stories such as yours helps sufferers to realise that they are really not alone. Many of us have similar histories. At least we have diagnoses now. It does make one think of how things could have been so different had we realised earlier. So much grief could have been saved but at least we know now! They told me that I had reached the maximum count of stopping breathing per hour. Apparently they stop counting at 100. It revolutionises our lives. I'll be 60 in a few days time and have been using cpap for about four years now. Here's hoping we've got lots of good times ahead of us! It's never too late eh? Have a great year 2013. 

Rosemary     

Steven Lloyd said:

Hi everyone.
I have been putting stuff on the Facebook group pages and thought I'd like to write on here too.
Until quite recently,when speaking to a guy in the pup (West Riding at Dewsbury railway station) I had never heard of sleep apnoea. After then speaking to my wife,Marilyn,it was suggested that I'd had the problem for at least all our married life since 1976 !
Perhaps I've had it all my life !My mum says I was always a good sleeper as a youngster.
I remember a snoring problem as a teenager.My next youngest brother once put a wet facecloth over my face and I woke up thinking I was drowning ! My youngest brother once threw his sports bag across the bedroom in my direction.As the bag was in mid-air he realised that his football boots were still in it ! A painful awakening this one.
Mandy's the time my wife has moved out of bed and slept downstairs.Otherwise,I might have stayed downstairs rather than disturb her sleep.
If I was not in the same bed though she could not count how many seconds I might stop breathing for.
After reporting sleep apnoea to my GP I was treated fairly quickly.
The sleep test originally showed that I stopped breathing up to 35 times in 1 hour so how could I ever have had anywhere near enough quality night time sleep in all those years ?
I was always tired in the daytime and would blame this on many things apart from the lack of sleep ;
A good night boozing
My body clock changing to cope with shift work
Being in a warm place
The boredom of bus travel

I could sleep anywhere !

Cpap treatment has made such a difference ! I have more energy,I do not feel tired in the daytime,I feel less irritable !(I think so anyway).
I am sure earlier treatment may have prevented a heart attack at 42 years old (I'm 58 now),and might have prevented many arguments at work.I might have even progressed further in my job.
As it is I have recently taken an early retirement package from Fox's Biscuits after nearly 34 years with them and am looking for a little job to eke out my pension.
Enough for now...don't want to bore you any more !
'Bye for now and I hope everyone has a Merry Christmas !

Steven, I agree with Rosemary, I also love reading everyone's stories and dont find them boring at all, happy new year.

Hi, Im Mark and Im new to this sleep apnoea lark, I got my cpap machine on christmas eve and have struggled ever since, changed from a nasal mask to one that goes over my mouth now so hopefully I can discover what real sleep is.

 

I look forward to getting to know you all

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