Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Welcome to our Forum - Feel Free to Introduce Yourself Here.

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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Hi Folks,

Thank goodness for my CPAP system as I can now drive without worrying about going sleepy!  I've finally sorted out the sleepiness problem and no longer fall asleep in meetings and have more energy again.

The hose cover really does help prevent rain-out and am so grateful for this forum as it was where I found out about it.

I've been using a ResMed machine for a couple of months now.  Initially an s9 on loan from Edinburgh's sleep centre (assesment place for many of us in Scotland) and then an s8 with humidifier from Dundee.  The mask I use is the one supplied by the hospital and is the Mirage Quattro as I breath through my mouth when sleeping.

Now I'm back with an s9 with humidifier, but I really do struggle with my lips and tongue going so dry!  Any tips gratefully received on this one.  Biotene helps a bit but doesn't last all night, but a dry mouth is a small price to pay for getting rid of that fatigue.

Cheers,

Ian Taylor from Dundee

Hi Ian,

I use a lip salve to help keep my lips from drying out.  You could try Vaseline, but make sure it doesn't touch your mask.

I'd also recommend you get a hose stand, which helps with rain-out and is just generally fantastic.  I wish Ninewells gave them out with the CPAP/APAP!

Tricia

Ian Taylor said:

Hi Folks,

Thank goodness for my CPAP system as I can now drive without worrying about going sleepy!  I've finally sorted out the sleepiness problem and no longer fall asleep in meetings and have more energy again.

The hose cover really does help prevent rain-out and am so grateful for this forum as it was where I found out about it.

I've been using a ResMed machine for a couple of months now.  Initially an s9 on loan from Edinburgh's sleep centre (assesment place for many of us in Scotland) and then an s8 with humidifier from Dundee.  The mask I use is the one supplied by the hospital and is the Mirage Quattro as I breath through my mouth when sleeping.

Now I'm back with an s9 with humidifier, but I really do struggle with my lips and tongue going so dry!  Any tips gratefully received on this one.  Biotene helps a bit but doesn't last all night, but a dry mouth is a small price to pay for getting rid of that fatigue.

Cheers,

Ian Taylor from Dundee

Hi Ian and Simon and glad you both found us, and you're now able to drive again safely

Ian, now you have the hose cover, can you try turning up the humidification to see if that helps you.  Sometimes food we eat can affect our dryness too (especially bacon) - as does some medication.  Having a bottle of water near your bed (I say bottle, because I've spilt several glasses before now) is helpful, but try to just take small sips when it's really bad.

Hi Terry , sorry i have been away & will be away next week for a 40 day cruise also.Any way i got the Resmed auto with humidifier that i have set on 6 as i have a very dry mouth.still trying to find the right  mask i am using the full & nasal, i think the nasal is best now i have a chin strap,What one do you find the best ? also do you still have bad days,Do you need a docter scrip to buy a mask only.Cheers Allan.  
 
Terry Vella said:

Welcome Allan, yes I'm from Melbourne and have been on CPAP for nearly two years and love it, mine also took 47 years to be diagnosed so know how you feel. The machines are not really the most importnat part the mask is and you attitude towards CPAP which yours sounds good. I use the Resmed S9 Auto and so does my sister and we both like it but I'm sure the F&P would do the same job. I have two lots of software for the Resmed , one called Sleepyhead and I have just been able to download the official Rescan software for free which I can share, but don't tell Resmed lol. Our system in Australia is different to the other countries, you can lease a machine and mask for 3 months before deciding if you want to buy them and can change them as many times as you want in that time. It is really good for masks because it took me 5 different masks before I got the right one. Let me know where you are at in the process, it is also different if you go private vs public, I go private. The CPAPs are also different, I use an auto machine which adjusts pressures as I need it, some people just use straight CPAP and the pressures do not change. The auto machines are a lot dearer about twice the price at about $2,000. Let me know where your up to and ask any questions, the more knowledge you get the easier it is.  

Allan, thats fine, it's all trail and error, I use a Mirage Quattro Full Face Mask because I am a mouth breather, Yes I still have some bad days like once or twice a week but it is much better than before when everyday was a bad day. I know and say to my self, if I have a bad day, 'everyday is a new day and is a different day and the following one will be better'. We don't need a script for the mask just the machines setting. You can buy anything without a script either over the net or from CPAP shops but need a script for them to set the pressures, hope you have a good holiday if I don't speak to you, are you Ok taking your new found friend?

Hello Arun,

I have been using my cpap equipment now for more than three and half years and I still get an itchy face and need to move the mask before I fall asleep to scratch my face. That is even when I use the wonderful face cream, which helps but doesn't eradicate difficulties complelely. Yes, moving the mask allows air to escape but it is momentary. The risk you are taking by giving up without perservering is that you have a hugely increased risk of stroke or / and heart attack - earlier and more frequently than needed. Your life is on the line. Sure it is a drag. No-one likes needing to be attached to a machine at night for the rest of their lives but in the end we all need to get used to it or suffer the consequences. You will be so tired if you don't accept the need for the treatment (surgery isn't always successful they tell me and is usually very painful to recover from) and your wife will also be woken by your snoring while you are untreated.!

 

So - the question remains. Are you going to accept your bad fate if you remain untreated or are you going to take it on the chin and try again? I reckon that my machine has saved my life. 60 years old can be young (I sure hope it is in my case) or it can be old and you can lose your life (or someone else's if you are still driving?) Sorry if I sound really unkind. Cpap allowed me to lose weight and reduce my diabetic risk and all of the other associated conditions. The largest benefit of all is the reduced risk of repeated strokes and heart attacks. It's a "no brainer". Do you have a choice? I don't.

There will be "nicer" people on the site than me. They will give you lots of ideas to help you cope better with your machine and masks.    

 

Hi Arun,

I used to be a mouth-breather too.  I always have been.  As a child I would drool and dribble.  Even as an adult, my mouth was always open.  Dental work was very difficult, as I couldn't breathe when my mouth was obstructed.  I found CPAP very unpleasant.  I was given a nasal mask, and no humidifier.  I swallowed a lot of air, and woke up bloated and with a sore throat.  Whenever I opened my mouth a howling gale escaped.  I tried a chin strap... but only for a couple of minutes - I couldn't tolerate it.

Adding a CPAP humidifier was a great help.  But night-times were difficult.  After three years, I am no longer a mouth breather.  My brain has been reprogrammed.  I tolerate the CPAP better, and my dentist is delighted with the improvement in my dental health - my teeth no longer get coated in tartar.  When I sit working all day at the computer, by mouth is firmly shut.  I no longer drool.

The only downside is that I seem to have forgotten how to mouth breathe.  When I have a heavy cold, and my nasal passages are congested, I find myself feeling short of breath, and have to consciously open my mouth and draw a breath.

The full masks all look rather claustrophobic to me.  I probably had a rather harsh introduction to CPAP but it's worked out well, as there's a good range of nasal masks, some of which don't even use silicone seals.  They work better for me, and don't irritate my beard growth.  Sure I get an itch sometimes, but I scratch it and go back to sleep :)

I don't know how other people get on with chin straps, but may be you could get used to a nasal mask, given determination and time?

Good luck,

Jonathan.



Arun Sicka said:

Hi !

My name is Arun. I am a male, 62 years old. I have had OSA for many years, but only had it confirmed 18 months ago after an overnight stay at a sleep clinic. They supplied me with a ResMed S9 Escape CPAP machine. I have not been able to use this because a) it is very uncomfortable to wear the full mask and b) when I do wear the mask, my face itches, especially my nose and I have to move the mask to one side to scratch my face, thus letting pressure escape and wake my wife ! I have tried the nose mask, but since I am a mouth breather and you have to keep your mouth shut, this does not help.

If anyone has similar issues and can help with a solution, I will be grateful.

I'm on here using my posh name, but actually I am known as Debi. I'm a mum, don't have sleep apnoea, but do have a 16 year old daughter which, sometimes, results in the same lack of sleep and accompanying headache! I've slept on an S9, a System One and an Icon just to 'understand'.

I work for Fisher and Paykel as country manager for the Uk. All views definitely my own (that's the legal bit!) and have used my name for transparency.

Have you ever had your daughter tested Debi?  I've had my son tested for the same reasons as your daughter, plus lots of brain confusion.  He came up with a low AHI of 6.8 and obviously a slim 17 year old isn't a candidate for CPAP, although he probably will get worse as he gets older.  My daughter refuses to be tested, and she's a nurse so should know better!!

Good to hear you're passionate at your job (sleeping with the devices by choice) and spending Sat evening on our forum ;)



Deborah Wainwright said:

I'm on here using my posh name, but actually I am known as Debi. I'm a mum, don't have sleep apnoea, but do have a 16 year old daughter which, sometimes, results in the same lack of sleep and accompanying headache! I've slept on an S9, a System One and an Icon just to 'understand'.

I work for Fisher and Paykel as country manager for the Uk. All views definitely my own (that's the legal bit!) and have used my name for transparency.
Ha, sorry, I meant having a daughter results in a lack of sleep for me! She doesn't have any problems!




Kath Hope said:

Have you ever had your daughter tested Debi?  I've had my son tested for the same reasons as your daughter, plus lots of brain confusion.  He came up with a low AHI of 6.8 and obviously a slim 17 year old isn't a candidate for CPAP, although he probably will get worse as he gets older.  My daughter refuses to be tested, and she's a nurse so should know better!!

Good to hear you're passionate at your job (sleeping with the devices by choice) and spending Sat evening on our forum ;)



Deborah Wainwright said:

I'm on here using my posh name, but actually I am known as Debi. I'm a mum, don't have sleep apnoea, but do have a 16 year old daughter which, sometimes, results in the same lack of sleep and accompanying headache! I've slept on an S9, a System One and an Icon just to 'understand'.

I work for Fisher and Paykel as country manager for the Uk. All views definitely my own (that's the legal bit!) and have used my name for transparency.

Hi everyone.

New to this but already getting there I think!

I have found CPAPCentral in Brisbane to be very helpful indeed - they are associated with the Queensland Sleep Clinic next door at the Mater Private Clinic - the process was very simple and easy.

No trouble getting used to wearing the equipment (nasal pillows) which is great news - given the size of the nose, not having any soreness is a bonus LOL!

I've got the software and I'm trying to fathom it one bit at a time.  It seems to tell me that the leakage is mixed - some nights none at all, on odd occasions it has on average been 12-15% for the whole night.  That certainly messes up my figures!

Hope to chat and share notes as we go!

Steve

 

Trust me to read it wrong.  I blame my brain confusion on all the years of undiagnosed sleep apnoea, and don't anyone dare mention 'dizzy blonde'   Anyway, glad to hear your daughter doesn't have problems Debi.

Deborah Wainwright said:

Ha, sorry, I meant having a daughter results in a lack of sleep for me! She doesn't have any problems!




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