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 Tony, 

I don't think there is any reason to feel "abnormal" because of your sleep apnea. It is a hidden epidemic and many people are simply not aware that they suffer from the problem. It took me over 60 years to find out.

Just be happy that you can get a proper nights sleep from now on and use the new energy to enjoy life!

Rgds,

Iain Noble



Tony Cota said:

Hi Folks,

I'm new on here and new to my OSA diagnosis. I did my overnight test 3 weeks ago and on Monday picked up a CPAP machine from the sleep clinic at my local hospital.

Despite having suffered the symptoms for many years, Constant tiredness, Morning headaches, Waking coughing, Endless nocturnal toilet trips, only recently when my girlfriend happened to say "You know you stop breathing when youre asleep - right?" I finally pursued a referral to a sleep clinic.

The initial diagnosis of severe Obstructive Sleep Apnoea and a 'score' of 61 apnoea episodes really hit me hard, the first night Monday (only 3 nights ago) felt awful, I felt utterly defective, abnormal and a failure.

That said having struggled to initially get to sleep with this weird mask on my face the results even the next morning on only a few hours sleep were startling.

3 nights on and the results are already unbelievable, I'm actually awake, not in a grey brain fog, not constantly tired and the permanent fog of non-specific depression seems to have lifted almost overnight.

I'm really glad I found this forum as it makes me feel a bit more 'normal'.

Thanks

Tone

Hi all ,
I found a link to your page via a Phillips Facebook page so I thought I'd take a look.
I here because I'm fairly convinced I have OSA. I was due to have a sleep study last sept but cancelled after they sent me an epworth score to complete and I got full marks!!
Why did I cancel when I scored highly??
I'm very concerned (after researching on t'internet) that I may have to surrender my driving licence. I have a young family to support and my work is over an hours drive away. If I were to lose my licence that would be massive problem. Obviously the fact I feel constantly tired and regularly have to pull over to rest on my into and home from work is also a massive problem. Hence the reason I am posting on here , to see if any of you have some advice for me.
Thank you for reading this post and for any reply so may receive
Chafster

Chafster

You will not have to surrender your driving licence, you will still be able to keep it. Once you are diagnosed you will be legally obliged to inform the DVLA, they will approach your consultant to ensure you are being treated and are continuing with your treatment.

Full marks on Epworth you really do need to get treatment,



Chafster said:

Hi all ,
I found a link to your page via a Phillips Facebook page so I thought I'd take a look.
I here because I'm fairly convinced I have OSA. I was due to have a sleep study last sept but cancelled after they sent me an epworth score to complete and I got full marks!!
Why did I cancel when I scored highly??
I'm very concerned (after researching on t'internet) that I may have to surrender my driving licence. I have a young family to support and my work is over an hours drive away. If I were to lose my licence that would be massive problem. Obviously the fact I feel constantly tired and regularly have to pull over to rest on my into and home from work is also a massive problem. Hence the reason I am posting on here , to see if any of you have some advice for me.
Thank you for reading this post and for any reply so may receive
Chafster

Hi Kevin & Chafster,

You will need to be aware that Kevin is right that you are legally obliged to inform the DVLA of your sleep apnoea and they will contact your specialist it will be dependant on the level of your score and if it is actually under control. When I was first diagnosed my sleep apps were 67 per hour and the DVLA rescinded my driving licence, it took two years to get it back when my specialist confirmed my apps had gone down with the use of my Cpa machine to under 10 per hour and I was able to re apply. Please do not take it for granted that you will be able to keep your licence from experience it depends on your specialists report and your score. Good luck with it and please drive carefully

Regards

Robert

Kevin Morgan said:

Chafster

You will not have to surrender your driving licence, you will still be able to keep it. Once you are diagnosed you will be legally obliged to inform the DVLA, they will approach your consultant to ensure you are being treated and are continuing with your treatment.

Full marks on Epworth you really do need to get treatment,



Chafster said:

Hi all ,
I found a link to your page via a Phillips Facebook page so I thought I'd take a look.
I here because I'm fairly convinced I have OSA. I was due to have a sleep study last sept but cancelled after they sent me an epworth score to complete and I got full marks!!
Why did I cancel when I scored highly??
I'm very concerned (after researching on t'internet) that I may have to surrender my driving licence. I have a young family to support and my work is over an hours drive away. If I were to lose my licence that would be massive problem. Obviously the fact I feel constantly tired and regularly have to pull over to rest on my into and home from work is also a massive problem. Hence the reason I am posting on here , to see if any of you have some advice for me.
Thank you for reading this post and for any reply so may receive
Chafster

Ah!  I was not aware that there was the possibility to have my driving licence placed on pause.  My consultant never implied that, perhaps because my counts were never that high and dropped considerably once I was on treatment  My last review showed less that 3.

Sadly Chafster you face a conundrum, You clearly recognise you are a danger to yourself and others, yet if you seek treatment you face restrictions for doing so.  You cannot hide from this, were you to be involved in an accident as there is already a paper trail of you suspicions on OSA with your doctor.  Your insurance may already be compromised as you presumably have not declared it.

Hi

This is not legal advice, but...

I was up at eighty-plus events an hour. Following diagnosis, I was fortunate that I could arrange my life so I didn't need to drive, until such time as I had a CPAP machine, and my APIs were down in single figures (currently 2 per hour) and "normal".  Then I wrote to the DVLA, and they were happy.  This approach had my consultant's blessing. So the question for you might be how quickly you can get diagnosed, and then treated.  Some machines will gather statistics which can be downloaded, so you can shw the treatment is effective.  If you can afford a private referral, it's possible treatment could be much faster (I know queue jumping the NHS isn't ethical... sometimes you've gotta do what you've gotta do).

I appreciate that my life doesn't depend on being able to drive, and in that respect I am fortunate.  But if you fell asleep at the wheel, the consequences could be fatalities.  And all the time you're not being treated, you're also storing up risks for heart problems, diabetes, etc.

I realise this sounds preachy.  Sorry.  In real life, I'm a huge fan of CPAP.  It's turned my life around.

Jonathan

My results were sky high (much higher than they could record - over 100) and they told me on diagnosis that as long as I complied properly (it is easily checked on the machines that the hospital supply - you can't cheat) I would keep my licence.

I made the mistake of telling DVLA a little too quickly though and as a result, it was touch and go that I might lose my licence for a while before the cpap machine arrived. So check when the machine can be collected and the therapy can start and tell DVLA accordingly. There is rarely a need to lose a licence.

Having said that, what is better, losing your licence for a while (which is a pain and scary when your livelihood is on the line) or losing your life and / or others losing their lives because you don't take it seriously enough. The risk is very real!! 

Yes, it is also necessary to know that you are already on their radar if your score was that high on the questionnaire.

I've been on cpap and apap for at least 8 years now. It saved my life. It could have saved others' lives. Families need you to earn a wage but they actually need you!!

Rosemary  

mmm in fact my consultant did not tell me I needed to inform the DVLA until I was well into my treatment, when he said " You have informed the DVLA haven't you ?"   It was written on the paperwork I had, but I hadn't read it.

That seems to be the trick.

I feel so much better on the treatment, and my machine logs night-time activity :) 

Hi everyone.

My name is Paul from Derbyshire, turned 49 4 days ago & was totally gobsmacked when the consultant said "you have very Severe Obstructive Sleep Apnoea"
In shock was an understatement as I'm not over weight, hardly ever drink & only smoke my e-cigarette after packing up smoking 2.5yrs ago, never for one minute did i think I had it!! Especially after the same test from a different GP 2yrs ago when I heard nothing back!!
I thought waking up in a morning & wanting to get back in bed was what everyone felt like!
Wanting to have a nap at dinner as I was struggling was how everyone felt!
Being unable to watch a film all the way through even in the afternoon i put down to having a stressful job.
Really struggling to stay awake in boring meetings was just down, again to stress & it being a boring meeting!
Being generally really tired all day every day no matter how much sleep I "thought" I'd had, was how everyone else felt right?!!

"That red line on that graph should be a straight line, yours is worse than a lie detector test or an earthquake scale" the consultant said.
I went straight to be fitted for a mask & was given a ResMed machine to take home with me. That was December 12th 2016 & I've used it every night since.
The hospital ring me regular as they can monitor results & alter the pressure etc.
I've registered with "my air" so I get to see results, the only thing I don't get to see though is how many per hour are "Obstructive" & how many are "Central" as
I've since learnt that I now also have the "Central apnoea" aswell, the one where your brain doesn't tell you to wake up!!! even now, I'm still having on average over 60 apnoea's per hour.
If the Central apnoea cannot be controlled the nurses said I may have to be put forward for funding for a different type machine, no idea what that means but I have a feeling I will find out soon!

I'm on my 2nd full face mask from the hospital but I still struggle as at times I wake up still panicking & cannot breath so I have to pull the mask off my face to get my breath back.
I wake every hour on the hour as I did before the CPAP, hopefully this will get less as I get used to the machine etc.

Thats about it for me really.
Really sorry for waffling on so much & will hopefully get to chat to you soon

Thank you
Paul
Sorry but I'm not sure if I've put this introduction In the right area??
Hello, my name is Karen and I only started using a CPAP machine a week before Christmas. It has been a steep learning curve especially as I was diagnosed in Germany where I live presently due to my husband's job.

I went to see the doctor after suffering breathing and sleep problems for far too long. An overnight monitor showed I was having up to 34 Apneas per hour and SATS dropping to 70%. I got the impression this was quite bad! I then went to a Sleep Clinic for 3 days and 2 nights where I was fitted with a CPAP machine which had the pressure adjusted to 9 whatever that might mean.

I struggled understanding fully due to my poor German and even though the Nurses and Doctors did their best, I feel there are things I haven't totally got to grips with.

At the moment I have some teething problems with getting comfortable and in particular with the mask. I am also unsure about the cleaning regime and even what water to use in the tank. So I will be reading articles and threads on this site with great interest in the hope I can come to terms with a future using a CPAP machine.

Hi and welcome Karen. That must have been hard being diagnosed in Germany with the language barrier. Glad your severe sleep apnoea got diagnosed though and you'll hopefully start to feel the benefits once you get the comfort issues sorted out.  Check out the article on this over on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or... where I've tried to address most problems.

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Lee posted a discussion

DreamWear full face

Hi all I’m having trouble with my DreamWear full face mask,I’ve spent a long time getting the fit right but I have two problems 1. The bit between my nostrils somehow hurts it’s bearable but I would sooner not have the pain and 2. I have to breathe…See More
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"How are you getting on, any progress?"
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Sleep2snore replied to Edam's discussion APAP or BIPAP
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SleepyHead replied to SleepyHead's discussion NHS or Private to get diagnosis to determine treatment
"Thank you - that is very helpful"
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Sleep2snore replied to SleepyHead's discussion NHS or Private to get diagnosis to determine treatment
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Feb 25
Sleep2snore replied to Edam's discussion APAP or BIPAP
"Sleepyhead YouTube.  Sleepyhead on YouTube"
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