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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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Replies to This Discussion
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Permalink Reply by simon Harwood on
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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?
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Permalink Reply by Bill Thomson on
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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?
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Permalink Reply by DaveHumphrey on
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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..
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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
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Permalink Reply by Iain Noble on
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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..
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Permalink Reply by Kath Hope on
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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..
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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
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Hi Tone
Welcome to the league of hoseheads, my experience was just like yours, amazing isn't it, best is no drugs.
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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
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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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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
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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
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