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

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