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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Great.....will look forward to hearing from you Jonny.  This is where we put patient stories http://www.hope2sleep.co.uk/patient-stories.html

JonnyJ said:

Hi Kath,

My pleasure, and nothing but the truth - what you do is wonderful!

I also tried the Amara Gel mask which was very good in helping with symptoms, but did give me many red marks on my face and a rather painful point on the bridge of my nose - all, obviously, alleviated with the View mask.

I would of course love to be one of your Patient Stories, I will get in touch on your email as suggested.

Sleep well!

JonnyJ.

hello, I am sharon.  I have a CPAP machine and full face mask,  Been using it about 3 weeks, but i am struggling with it.

ON THE GOOD SIDE i now dont need a nap every afternoon and can stay up after 8pm

ON  THE OTHER SIDE, I really struggle every night for ages to get it to fit, it is either blowing air over my eyes or making whistling/farting noises. Every time i swallow or change from nose to mouth breathing i destroy whatever seal i may have.  I guess it works a bit as I'm not so tired next day, but i end up ripping it off about 3am most nights.

I really want to persevere with it, have no choice really.

Any helpful comment would be very welcome, thank you.

Hi Sharon,

You don't say what brand of mask you are using? I have this one

http://tinyurl.com/yc6nfu9k

and provided I adjust the straps correctly it functions very well.

You may also find a custom CPAP pillow helps.

Thank you iain, the mask looks like your's.  I don't know what a CPAP pillow is but I will have a look.

Thanks again, Sharon

Iain Noble said:

Hi Sharon,

You don't say what brand of mask you are using? I have this one

http://tinyurl.com/yc6nfu9k

and provided I adjust the straps correctly it functions very well.

You may also find a custom CPAP pillow helps.

Hi Sharon, I can empathise!  For 18 years I had no problem at all, then recently both my mask and machine became obsolete and I'm really struggling with the new equipment.  I don't actually use a CPAP machine, I use a NIPPY-3 bi-pap machine for central apnoea (the rare type), which basically means the pressure is set very high and I cannot get a decent seal with the 3 masks I've tried so far in the last few months.  Face shape means everything and what is an ideal mask for one person can be a nightmare for another, so I think it's important you try out as many as possible, if you can.  You can also purchase Silent Night mask liners on this website, which help make masks more comfortable on the face and can also help prevent leakage (if it's not too bad).  They do help me a little, but not as much as I'd like.  Like you, I need to try out more masks to get a decent seal, so the dreadful noises don't keep me awake, as well as the machine alarming all night!  Let us know how you get on x

thank you Amelia, I appreciate your message and advice.

Sharon

Amelia Kennedy said:

Hi Sharon, I can empathise!  For 18 years I had no problem at all, then recently both my mask and machine became obsolete and I'm really struggling with the new equipment.  I don't actually use a CPAP machine, I use a NIPPY-3 bi-pap machine for central apnoea (the rare type), which basically means the pressure is set very high and I cannot get a decent seal with the 3 masks I've tried so far in the last few months.  Face shape means everything and what is an ideal mask for one person can be a nightmare for another, so I think it's important you try out as many as possible, if you can.  You can also purchase Silent Night mask liners on this website, which help make masks more comfortable on the face and can also help prevent leakage (if it's not too bad).  They do help me a little, but not as much as I'd like.  Like you, I need to try out more masks to get a decent seal, so the dreadful noises don't keep me awake, as well as the machine alarming all night!  Let us know how you get on x

Welcome Sharon, and although you've having a few teething problems, after just 3 weeks you're doing pretty good.  It's also great to hear you're feeling daytime improvements, and just imagine how much better you'll feel when you're  managing to wear the mask all night I highly recommend what Amelia suggested (the Silent Night liners) and if you take a look at this link on the website there are lots of other tips http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...

Thanks for accepting me! I am new to the sleep apnea world, but suspect I have had it for many, many years. It was just diagnosed as many of things. 

Hi Sharon,

I have been using a Cpap machine for 7 months. I too struggled with a full face mask (Simplus as issued by sleep clinic) but I changed from a large to medium size mask and it is a lot more comfortable and, because it fits better, I get less 'blow offs' when my cpap pressure is reaching its peak.

I tried an Amara View mask which covered my mouth and had a nasal recess for my nose. This was less claustrophobic and hurt the septum at the tip of my nose and I also struggled to get a good seal. However, we are all different and it may suit you.

Good luck and stick at it.
 
sharon said:

hello, I am sharon.  I have a CPAP machine and full face mask,  Been using it about 3 weeks, but i am struggling with it.

ON THE GOOD SIDE i now dont need a nap every afternoon and can stay up after 8pm

ON  THE OTHER SIDE, I really struggle every night for ages to get it to fit, it is either blowing air over my eyes or making whistling/farting noises. Every time i swallow or change from nose to mouth breathing i destroy whatever seal i may have.  I guess it works a bit as I'm not so tired next day, but i end up ripping it off about 3am most nights.

I really want to persevere with it, have no choice really.

Any helpful comment would be very welcome, thank you.

Hi everyone,

I'm Andy, aged 30, and I am currently in the process of being diagnosed with OSA (I suspect), with an appointment at the Royal Stoke Uni Hospital to be fitted for a CPAP machine this coming Monday.

 

So far it has taken 12 months from my initial visit to the doctors after my wife noticed my snoring getting progressively worse and holding my breath considerably throughout the night.

Unfortunately the Shrewsbury NHS Trust have been appalling to say the least, hence why I requested to be referred to Stoke, as Shrewsbury told me to expect a further 18 month wait in September. I had to have two separate sleep studies as one of the test machines wasn't working properly and they deemed the initial finger pulse ox test to be insufficient even though it highlighted I suffer from around 57 episodes per hour. After subsequently losing the second set of results, I have finally been sent for a CPAP fitting however I am yet to even be told the diagnosis!

I'm not sure if this is standard practice for the NHS but from my point of view it's been extremely poor. It has put some fair strain on my young family with my wife and I resorting to sleeping in separate rooms for the past 12 months as the snoring and apnoea episodes keep her awake.

On a positive, I'm not excessively sleepy in the daytime, in fact luckily I would say I'm not sleepy in the daytime at all so after reading through various articles I'm hopeful that I won't have to surrender my driving licence.

I have to say how relived I was to find this website and forum, as I have been given zero support from any health care professionals so to be able to read people's comments,  experiences, and advice has been invaluable. I'm apprehensive to say the least about the coming weeks, getting used to the CPAP and how it will affect my day to day routines/life, but I'm optimistic that it will certainly help.

If there is any advice or pointers anyone can fire my way they would be gratefully received.

All the best,

Andy

Andy,

Sorry you have had so little support from the NHS. We have an excellent sleep clinic here in Cleveland.

You won't have to surrender your driving licence but you will have to tell them if you are diagnosed with sleep apnea.

Once you are diagnosed and get your pump and mask, expect some feelings of claustrophobia when you wear it for the first few times. Stick with it and it will soon become part of your nightime routine.

Get into the habit of washing the mask regularly.

If you find the air that you are getting from the pump is too cold and dry, ask for a humidifier.

Hi Andy

Sorry you've had a rough ride.  How times change.  My sleep study 10 years ago was just a finger pulse thing, and a camera.  I had 86 events per hour.  I guess we're all different, but the first night with my machine, I threw the mask off in the middle of the night, and still woke up feeling better than I'd felt in years.  The second night I kept the mask on all night, and have done ever since.  The first time I had a sore throat, which I couldn't shift, I got a humidifier and I haven't looked back.  Some years later, my better half was tested for OSA and now has a CPAP machine too, but he doesn't need a humidifier.  The hospital (University College Hospital, London) discharged me several years ago on the basis that I am managing my OSA and remain symptom free.  I still have access to their lab if I need a new mask or I want the machine servicing.

It's great that you got diagnosed.  Untreated OSA brings in lots of other risks. For example, my dentist still comments on how much healthier my mouth is, since I started CPAP treatment.

Anyway, I really just wanted to say that for some people it takes a while to get used to CPAP, whilst for others it's like a duck to water.

Good luck.  I hope you're soon tucked up in bed with the missus.

Andy Falconer said:

I had to have two separate sleep studies as one of the test machines wasn't working properly and they deemed the initial finger pulse ox test to be insufficient even though it highlighted I suffer from around 57 episodes per hour.

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