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 Bob

Welcome to our group and glad you found us.  An apology is never needed for being a bit down on things, and without good support many people feel like this from time to time.  It's great to hear you haven't let your diagnosis prevent you from travelling.

For many years I too used the FitLife when struggling to find a suitable mask.  I still love my old faithful, although now find the DreamWear Full Face works really well for me, although masks are a very individual thing and what works for one person doesn't always work for another.

There is no judgement from me, as you sound very responsible in not going behind the wheel when you feel tired as there are too many accidents by people taking risks.

If you look on our charity's main website there's a link here to the terminology https://www.hope2sleep.co.uk/a-to-zzz-of-sleep-definitions-and-abbr...The main thing people are usually interested in is looking at their results on the machine to see that their AHI (apnoea hypopnoea index, meaning the amount of apnoeas or hypopnoeas per hour) is as low as possible - ideally under 5, and also that their leakage isn't high from the mask.  Let us know if there's anything else you're struggling to understand.


Bob Young said:

Thanks for letting me join your group. I have been on CPAP/APAP since 2012 and have mild sleep apnea. I started with a Philips Resmed unit and now have a Dreamstation, all supplied via the NHS.

My results have always met the criteria laid down which says it is doing what it should be and for fear of losing my driving licence I have never admitted the truth.. I don't drive unless I'm fit and always share driving with my wife, and stop if I get tired, so please don't castigate me about that, but I have problems and I'm hoping to try to find answers here.

I have tried to learn what all the terminology means and all the abbreviations but for some reason it just hasn't sunk in. Maybe I feel resistant to it all. I'm usually really quite good at understanding medical matters, I have several major health issues and I learn about how the meds work and try to understand options and alternatives, but this Apnea thing just drives me nuts...!

My consultant has been less than helpful and I have va GP (I think) who is un-seeable and generally considered in the town to be the most unhelpful Dr in england.. But he's the only show in town so I'm stuck with him too..

A bit at wits end with it all and need some constructive help.

Sorry to be a bit down on the whole thing.

On the up side I have travelled a bit with my machine, to Australia, Hong Kong and around Europe and I have used it camping in a tent and in caravan & motorhome etc.

I learned the hard way not to descale my humidifier, or use anything to sweeten the flavour as almost everything attacks the seal on the heater plate.

I went through several different masks from nasal masks to full face with chin straps and the only thing I found works is a real full face - FitLife mask.

Thanks and Hello,

Bob

Hi,
Just popping in to say Hello.

I haven't been diagnosed with sleep apnea not do I have a CPAP machine but after 40 years of intensive snoring and the worry of causing distress to anyone with close radius I am attending the doctors to try and get permission to purchase a machine.
So with so many choices and options I was hoping to try and get some valuable feedback to assist me in finding a machine.
I am currently using Snorelab to record my snoring, I dont even know how my wife can sleep through it :-( 

Thanks in advance for any feedback. 

hi

your gp will refer you to your local sleep clinic. they will test your pulse and o2 levels during the night. if the results indicate sleep apnea they will provide a pump and a mask. i woudl advise asking for a humidifier unit as well.

https://www.nhs.uk/conditions/sleep-apnoea/

Thank You Iain,
I am seeing GP tomorrow with my evidence collected so far,  hopefully they will be compliant and assist me going forward, I was looking to just purchase a machine and I agree I did see the humidifier machines which do look a lot more capable.
Will update on progress.
Regards
Roy

Iain Noble said:

hi

your gp will refer you to your local sleep clinic. they will test your pulse and o2 levels during the night. if the results indicate sleep apnea they will provide a pump and a mask. i woudl advise asking for a humidifier unit as well.

https://www.nhs.uk/conditions/sleep-apnoea/

How did you get on at the GP Royston?  Hopefully, you got a sleep clinic referral as you do need a diagnosis for a CPAP machine which is a prescription item.

Royston Tucker said:

Thank You Iain,
I am seeing GP tomorrow with my evidence collected so far,  hopefully they will be compliant and assist me going forward, I was looking to just purchase a machine and I agree I did see the humidifier machines which do look a lot more capable.
Will update on progress.
Regards
Roy

Iain Noble said:

hi

your gp will refer you to your local sleep clinic. they will test your pulse and o2 levels during the night. if the results indicate sleep apnea they will provide a pump and a mask. i woudl advise asking for a humidifier unit as well.

https://www.nhs.uk/conditions/sleep-apnoea/

Hi Kath,

Thank you for your message, I attend the GP surgery and provided my evidence and completed the simple online test which all concluded I needed a referral which is great but I was told there is a long waiting list so I am not sure where that leaves me.

I have been carrying out my own recording of sound and video and its rather difficult to hear and watch to be honest with an average of 38 seconds upwards before the gasp for breath and waking up.
Fingers crossed it doesn't take too long before I get to see someone.
Regards
Roy

Kath Hope said:

How did you get on at the GP Royston?  Hopefully, you got a sleep clinic referral as you do need a diagnosis for a CPAP machine which is a prescription item.

Royston Tucker said:

Thank You Iain,
I am seeing GP tomorrow with my evidence collected so far,  hopefully they will be compliant and assist me going forward, I was looking to just purchase a machine and I agree I did see the humidifier machines which do look a lot more capable.
Will update on progress.
Regards
Roy

Iain Noble said:

hi

your gp will refer you to your local sleep clinic. they will test your pulse and o2 levels during the night. if the results indicate sleep apnea they will provide a pump and a mask. i woudl advise asking for a humidifier unit as well.

https://www.nhs.uk/conditions/sleep-apnoea/

Hi Bob

I just replied to your other post and have the answer here (that it's APAP you're on).  Nobody will have a go at you on here, about driving, as you've clearly said that you don't drive when tired which is responsible!  Good to hear, despite how you feel, you've managed to do some good travel.  We have a motorhome too and use it for leisure and the charity work.

Regarding terminology, see if this link on our main website helps https://www.hope2sleep.co.uk/a-to-zzz-of-sleep-definitions-and-abbr...

Daytime tiredness can also be linked to other things and the biggest things linked with sleep apnoea are B12 and Vit D definiciencies, plus diabates and hypothyroidism, so it would be worth getting blood tests for these.  Also, you say about other medical conditions, and very often the medication alone can cause tiredness.  Some of them can even cause sleep apnoea, which I thought was mentioning with you saying you have it mild.

Bob Young said:

Thanks for letting me join your group. I have been on CPAP/APAP since 2012 and have mild sleep apnea. I started with a Philips Resmed unit and now have a Dreamstation, all supplied via the NHS.

My results have always met the criteria laid down which says it is doing what it should be and for fear of losing my driving licence I have never admitted the truth.. I don't drive unless I'm fit and always share driving with my wife, and stop if I get tired, so please don't castigate me about that, but I have problems and I'm hoping to try to find answers here.

I have tried to learn what all the terminology means and all the abbreviations but for some reason it just hasn't sunk in. Maybe I feel resistant to it all. I'm usually really quite good at understanding medical matters, I have several major health issues and I learn about how the meds work and try to understand options and alternatives, but this Apnea thing just drives me nuts...!

My consultant has been less than helpful and I have va GP (I think) who is un-seeable and generally considered in the town to be the most unhelpful Dr in england.. But he's the only show in town so I'm stuck with him too..

A bit at wits end with it all and need some constructive help.

Sorry to be a bit down on the whole thing.

On the up side I have travelled a bit with my machine, to Australia, Hong Kong and around Europe and I have used it camping in a tent and in caravan & motorhome etc.

I learned the hard way not to descale my humidifier, or use anything to sweeten the flavour as almost everything attacks the seal on the heater plate.

I went through several different masks from nasal masks to full face with chin straps and the only thing I found works is a real full face - FitLife mask.

Thanks and Hello,

Bob

Hi everyone, 

I thought I'd introduce myself. I am Sophie and I was diagnosed with OSA a year ago. I am managing okay with the mask and think it is helping my health overall. I am, however, struggling more with feeling down in the past few months - I'm hoping that getting to know others in a similar situation will help.

Sophie

Sorry for the delayed welcome Sophie.  Great to hear things are going well with CPAP and some people do feel a little down at first.  If you use Facebook I'd highly recommend joining our Private Support Group which is far more active than this forum and you'll meet loads of people in there https://www.facebook.com/groups/SleepApnoeaSupportAndAwareness/

Also see if this article helps you https://www.sleepapnoeablog.com/is-cpap-a-blessing-or-a-curse/

Sophie said:

Hi everyone, 

I thought I'd introduce myself. I am Sophie and I was diagnosed with OSA a year ago. I am managing okay with the mask and think it is helping my health overall. I am, however, struggling more with feeling down in the past few months - I'm hoping that getting to know others in a similar situation will help.

Sophie

Hello everyone,
I've recently  been diagnosed with OSA but not yet provided with the mask or machine. I have found several of my out patient appnts have been cancelled and hope that my sleep clinic on the 5th May isn't, but I won't be surprised if it is.
I am considering buying my own machine once I get the sleep study reports which was done several weeks ago, but from what I've read I'd choose automatic that is very quiet and has good reviews. I don't need a travel one just my first OSA machine with the appropriate mask and tubing.

So if anyone has tried a few and has any suggestions for a quiet home based auto-machine I would be grateful to read your experiences.Thank you for having me and I've been a shift worker all of my life and now retired at 57 due to health problems.

I'm overweight with severe respiratory problems and have chronic severe arthritis with gout on top in my knees causing excruciating pain. I also have very big tonsils!!

I've been an in patient with sepsis, & chest infections 4 times since last September so any suggestions will be welcomed.
Thank you again for accepting me.

Hi Lynn

I bought my machine many (many!) years ago.  It's a DeVilbiss Intellipap (also sold as a SleepCube) APAP machine and I am very happy with it although no doubt the technology has moved on.  I am replying to mention that I bought my machine with a humidifier.  Some people need a humidifier, some don't.  Depending on where you buy from, it's sometimes a lot cheaper to buy both together.

Having said that, I hope your clinic offers you a telephone appointment and prescribes you an NHS machine there and then.

Kath will be able to advise if you can buy a machine without a prescription.

Lynn Mattimoe said:

Hello everyone,
I've recently  been diagnosed with OSA but not yet provided with the mask or machine. I have found several of my out patient appnts have been cancelled and hope that my sleep clinic on the 5th May isn't, but I won't be surprised if it is.
I am considering buying my own machine once I get the sleep study reports which was done several weeks ago, but from what I've read I'd choose automatic that is very quiet and has good reviews. I don't need a travel one just my first OSA machine with the appropriate mask and tubing.

So if anyone has tried a few and has any suggestions for a quiet home based auto-machine I would be grateful to read your experiences.Thank you for having me and I've been a shift worker all of my life and now retired at 57 due to health problems.

I'm overweight with severe respiratory problems and have chronic severe arthritis with gout on top in my knees causing excruciating pain. I also have very big tonsils!!

I've been an in patient with sepsis, & chest infections 4 times since last September so any suggestions will be welcomed.
Thank you again for accepting me.

Hi Sophie 
I'm new to OSA and haven't been supplied with a machine or mask yet but due to the virus my local hospital are canceling all appointments.

I hope to experience the machine and mask and I've asked for a copy of my sleep study to buy a machine If necessary, and I'll pay for a private test if needed as my oxygen saturation drops really low into the 60s and has been into the 40s when I was unconscious.

I will get one prescribed and hope that I experience the difference from being  somewhat confused, foggy thoughts and fatigue to feeling more refreshed. As long as I remember I've had insomnia but with a lifetime of steroids I'm obese, unable to walk due to severe arthritis and yet 5 years ago I was working full time to now being in a wheelchair. I suppose we may all have similar stories but I'm hoping to be inspired and learn about  the better  machines and masks and read everyone's stories. I believe feeling low is a symptom of sleep apnoea, I'm not certain but my partner reads up everything.xxx


Kath Hope said:

Sorry for the delayed welcome Sophie.  Great to hear things are going well with CPAP and some people do feel a little down at first.  If you use Facebook I'd highly recommend joining our Private Support Group which is far more active than this forum and you'll meet loads of people in there https://www.facebook.com/groups/SleepApnoeaSupportAndAwareness/

Also see if this article helps you https://www.sleepapnoeablog.com/is-cpap-a-blessing-or-a-curse/

Sophie said:

Hi everyone, 

I thought I'd introduce myself. I am Sophie and I was diagnosed with OSA a year ago. I am managing okay with the mask and think it is helping my health overall. I am, however, struggling more with feeling down in the past few months - I'm hoping that getting to know others in a similar situation will help.

Sophie

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Latest Activity

Steve K-E is now a member of Hope2SleepGuide
Thursday
Lynn Mattimoe posted a discussion

Cancelled out patient appointment.

HiI had an appnt due 5th May for results of NHS sleep study and to get the machine and mask. Since most appointments are being cancelled I've paid for a private sleep study despite having an NHS one several weeks ago.I'll get the results within 7 to…See More
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Lynn Mattimoe replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Sophie I'm new to OSA and haven't been supplied with a machine or mask yet but due to the virus my local hospital are canceling all appointments. I hope to experience the machine and mask and I've asked for a copy of my sleep…"
Mar 22
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Lynn I bought my machine many (many!) years ago.  It's a DeVilbiss Intellipap (also sold as a SleepCube) APAP machine and I am very happy with it although no doubt the technology has moved on.  I am replying to mention that I…"
Mar 22
Lynn Mattimoe replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hello everyone,I've recently  been diagnosed with OSA but not yet prided with the mask or machine. I have found several out patient appnts have been cancelled and hope that mine on the 5th May isn't but won't be surprised if it…"
Mar 22
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Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Sorry for the delayed welcome Sophie.  Great to hear things are going well with CPAP and some people do feel a little down at first.  If you use Facebook I'd highly recommend joining our Private Support Group which is far more active…"
Mar 14
Sophie replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi everyone,  I thought I'd introduce myself. I am Sophie and I was diagnosed with OSA a year ago. I am managing okay with the mask and think it is helping my health overall. I am, however, struggling more with feeling down in the past few…"
Mar 7
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"Ah yes I clicked on your link Richard and seems that's an old link you found.  This is the latest link to their current sleep apnoea products https://www.philips.co.uk/healthcare/solutions/sleep-and-respiratory-care/dream-family …"
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Richard Smith replied to Richard Smith's discussion Philips Trueblue
"Hi Kath, The Trueblue is still on the Philips website here https://www.philips.co.uk/healthcare/solutions/sleep-and-respiratory-care/masks which is why I thought it was still available.  Anyway, I’ve gone ahead and ordered the…"
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Eric Swindon replied to Eric Swindon's discussion DeVilbiss Intellipap AutoAdjust Model DV54D for sale in original travel bag
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Feb 29
Nick Daniel replied to Eric Swindon's discussion DeVilbiss Intellipap AutoAdjust Model DV54D for sale in original travel bag
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