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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So - I am proud to announce I am now a true CPAP sleeper - this hosehead has finally found the solution in the guise of the mask covers.  The difference is totally amazing - I can sleep though the night - something which has alluded me for a year of CPAPing.  These really have changed my life.  A week on and I can honestly say that apart from the usual stress of life generally that I sleep as I should - in fact one night I sleep for an overwhelming 12 hours!!!!!!!!!!!!!!!!!!!!!

If anyone has any issue with mask leakage, night sweating which causes the mask to slip, or general aversion to the silicon which covers the mask then these covers are for you.  I can only say thank you and I will continue to update you with progress as I am one of those pesky people who things work for, for a while then all goes back to chaos, so keep up with this thread and this hosehead will provide you with the mask cover update as she progresses through her journey.

MASSIVE thanks again to my Mum for reading the Daily Mail with Kath Hope bearing all that is Sleep Apneoa !!!!!

Fabulous news Sam, and good old Mum coming to the rescue :)  It's the little things that can make such a huge difference to us 'hose heads' and I'm delighted to hear the Silent Night Mask Liners have done that for you - as well as countless others (myself included)!

Sam said:

So - I am proud to announce I am now a true CPAP sleeper - this hosehead has finally found the solution in the guise of the mask covers.  The difference is totally amazing - I can sleep though the night - something which has alluded me for a year of CPAPing.  These really have changed my life.  A week on and I can honestly say that apart from the usual stress of life generally that I sleep as I should - in fact one night I sleep for an overwhelming 12 hours!!!!!!!!!!!!!!!!!!!!!

If anyone has any issue with mask leakage, night sweating which causes the mask to slip, or general aversion to the silicon which covers the mask then these covers are for you.  I can only say thank you and I will continue to update you with progress as I am one of those pesky people who things work for, for a while then all goes back to chaos, so keep up with this thread and this hosehead will provide you with the mask cover update as she progresses through her journey.

MASSIVE thanks again to my Mum for reading the Daily Mail with Kath Hope bearing all that is Sleep Apneoa !!!!!

Hi everyone.

I have recently been diagnosed with Obstructive sleep apnoea syndrome. Details as follows, Epworth score was 13 and my overnight  oximetry showed I was dipping down 54 times and hour greater than 4%. The doctor said this is severe. I have a bmi of 26 and no other health issues.

The NHS have fitted me out with a CPAP machine, resmed 10 with a airfield mask, standard issue I think. After a brief, this is what you do, off in went.

Now into my second week and I am slowly getting used to it.

It's not the best thing time have go wear to bed but needs must.

I seem to have all the normal issues, occasional mask leakage, dry mouth and pillow trouble, but it seems to be working so I'll persevere. 

Question,  does anyone have any thoughts on pillows, are cpap pillows worth the money?

Hello Simon and welcome to the site. You will also find lots of help and information if you join Kath's Facebook group.

In answer to your question, I've tried a CPAP pillow and found it made no difference, but we are all different so it might work for you. I like a really good thick soft pillow myself, while others prefer those V-shape ones.

When I was first diagnosed I had a similar BMI to yours - and still have, which shows you don't need to be obese or grossly overweight to suffer from OSA. My body fat percentage is actually very low - practically athlete level - which proves anybody can have OSA. My Epworth scores were low too, between 3 and 5 and I only got referred because a cardiologist could find no obvious cause for dangerously high blood pressure and wanted to look at night time oxygen levels.

Stick with it - it took me 18 years or more to get the right combination of mask and machine, but things have moved on a lot since so you should not need to wait that long. Adjusting to the equipment is a pain, I know, but worth it in the long term. Your dry mouth might be helped by humidification. I think the Resmed 10 has a built in humidifier so that might need adjusting. Occasional mask leaks are par for the course, but you might get on better with a different mask. I use nasal pillows but am not a mouth breather so they are good for me. They don't seem to suit the majority of patients though.



simon Harwood said:

Hi everyone.

I have recently been diagnosed with Obstructive sleep apnoea syndrome. Details as follows, Epworth score was 13 and my overnight  oximetry showed I was dipping down 54 times and hour greater than 4%. The doctor said this is severe. I have a bmi of 26 and no other health issues.

The NHS have fitted me out with a CPAP machine, resmed 10 with a airfield mask, standard issue I think. After a brief, this is what you do, off in went.

Now into my second week and I am slowly getting used to it.

It's not the best thing time have go wear to bed but needs must.

I seem to have all the normal issues, occasional mask leakage, dry mouth and pillow trouble, but it seems to be working so I'll persevere. 

Question,  does anyone have any thoughts on pillows, are cpap pillows worth the money?

Hello

I'm Dave and sick of feeling tired all the time...I want to get my life back and I hope this forum can help..

Hello Dave

Have you had a sleep study or been diagnosed with sleep apnoea? That's definitely the first step. Have you filled out the Epworth questionnaire? A high score on that is likely to set things in motion for therapy to relieve your tiredness. Kath also has a private Facebook group that is full of good advice and support - why not join that too?

All the best

You don't provide a lot of information about your problem. Have you consulted your local doctor? In my case I was tired all the time and my wife complained of my loud snoring. My sister pointed out that as well as snoring very loudly I was stopping breathing every few minutes. My doctor referred me to the sleep clinic at our local hospital and they got me to use a home oximetry kit to check my pulse and blood oxygen saturation level whilst sleeping. They diagnosed moderate sleep apnea and I was prescribed a mask,and pump. Now that I am using the pump my sleep is much better, I have stopped snorng and I am not tired all the time.

DaveHumphrey said:

Hello

I'm Dave and sick of feeling tired all the time...I want to get my life back and I hope this forum can help..

Iain, DaveHumphrey had also started a new discussion about why he's so tired here on this link http://hope2sleepguide.co.uk/forum/topics/advice-on-s9-equipment

Iain Noble said:

You don't provide a lot of information about your problem. Have you consulted your local doctor? In my case I was tired all the time and my wife complained of my loud snoring. My sister pointed out that as well as snoring very loudly I was stopping breathing every few minutes. My doctor referred me to the sleep clinic at our local hospital and they got me to use a home oximetry kit to check my pulse and blood oxygen saturation level whilst sleeping. They diagnosed moderate sleep apnea and I was prescribed a mask,and pump. Now that I am using the pump my sleep is much better, I have stopped snorng and I am not tired all the time.

DaveHumphrey said:

Hello

I'm Dave and sick of feeling tired all the time...I want to get my life back and I hope this forum can help..

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 Tone

Welcome to the league of hoseheads,  my experience was just like yours, amazing isn't it, best is no drugs.


Hello Tone, glad the therapy is working for you. You might like to consider joining the Facebook group associated with this site. It's more active than the forum and there is a lot of support available. More important perhaps, there are many who are struggling with the treatment who would be encouraged by your positive story.

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

Welcome Tone and glad you found us.  Hope you've thanked your girlfriend for this new lease of life lol.  Yes, we're the lucky ones who have been diagnosed as sleep apnoea is far more common than people think.  I did email you earlier by the way, and great to hear what a good start you've had to the CPAP therapy.

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Latest Activity

Profile IconMatthew li and Stuart Wormleighton joined Hope2SleepGuide
yesterday
Marc Newman is now a member of Hope2SleepGuide
Wednesday
Profile IconJune Curtin and Frank Fartin joined Hope2SleepGuide
Mar 18
Lee replied to Lee's discussion DreamWear full face
"Well I turned EPR on and tried the mask again last night, but again I stopped breathing which woke me up gasping for air. It seems to happen just after or not long after I drop off, after the third time I changed mask back to original one and went…"
Mar 18
Kath Hope replied to Lee's discussion DreamWear full face
"Sorry for the delay as I managed to get myself locked out of the forum lol.  Please don't be messing with the pressures and contact your hospital if your wife has noticed you looking gray.  Perhaps go back to a different mask until…"
Mar 15
Edam replied to Edam's discussion APAP or BIPAP
"There is no link between the 95% pressure and the AHI. A few nights back my 95% pressure was 19.46 with AHI 0 Last night my 95% pressure was 17 with AHI 0 When the AHI does increase its normally hypopnoea,s So why does the APAP want to increase the…"
Mar 15
Lee replied to Lee's discussion DreamWear full face
"Hi thanks for the reply’s I will look at this as the wife said I was gray yesterday and after looking at the instructions again it says about the symptoms I had to not use and talk to my clinic so a bit worried. I used my other full face mask…"
Mar 15
Sleep2snore replied to Lee's discussion DreamWear full face
"I would say if you have the Ramp Start enabled to make it start at a higher pressure.  Check also if you are using a big enough cushion as this is a common mistake.  Same with Nasal Pillows, people tend too use a size to small. Check you…"
Mar 14
Sleep2snore replied to Edam's discussion APAP or BIPAP
"That is not impossible, even dust and mites can cause problems, even the mites that are so tiny you can't see them and they live on your body.  However, only you yourself can work out if certain food make things worse.  It could be…"
Mar 14
Edam replied to Edam's discussion APAP or BIPAP
"I am now finding that the pressure the APAP runs at during the night is dependent  on what I have eaten that evening. I have found that if I have bolied rice rather than chips with the evening meal then my 95% pressure can reduce by as much as…"
Mar 14
Kath Hope replied to Lee's discussion DreamWear full face
"Hi Lee.  Sorry to hear you're still having problems with masks.  It's not normal to feel there's not enough air with the DreamWear as that mask usually give people the opposite sensation of feeling more pressure than…"
Mar 13
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
Mar 13
Sleep2snore replied to SleepyHead's discussion NHS or Private to get diagnosis to determine treatment
"How are you getting on, any progress?"
Mar 5
Sleep2snore replied to Edam's discussion APAP or BIPAP
"I was not off for a few days. The results were the same as when I started! Which I have to say was bad!"
Mar 5
Felicity Goodliffe is now a member of Hope2SleepGuide
Mar 5
Edam replied to Edam's discussion APAP or BIPAP
"It is my understanding that when a new sleep test is required you need to be off CPAP for a few days to get a accurate test. Is this correct The London hospital does not seem to be aware of this"
Mar 4
John Brown is now a member of Hope2SleepGuide
Mar 2
SleepyHead replied to SleepyHead's discussion NHS or Private to get diagnosis to determine treatment
"Thank you - that is very helpful"
Feb 26
Sleep2snore replied to SleepyHead's discussion NHS or Private to get diagnosis to determine treatment
"Private and will not be cheap!  London Sleep Clinic (PRIVATE) London Bridge Hospital  know nothing about this one. Sleep & Snoring Institute  Know nothing about this one either, If you are near London try getting to one of the…"
Feb 25
Sleep2snore replied to Edam's discussion APAP or BIPAP
"Sleepyhead YouTube.  Sleepyhead on YouTube"
Feb 25

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