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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
Views: 13125
Replies to This Discussion
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Permalink Reply by Jacqueline Bathgate on
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Just wanted to say I am a newbie on here but I have been using a cloth mask now for a couple of weeks after months of soreness, pain, and teeth hurting with nasal mask it is really good it takes a few tweaks to get it right but I can say it is comfortable and there is nothing digging and rubbing your face.
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Permalink Reply by Lisa on
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Hello, everyone. Delighted to see this new site. I've been having computer problems since about the time this site started so am now busy trying to catch up with all the info that is already on here!
I have had sleep apnoea for about 20 years. I found the early CPAP machines and masks absolutely horrible. I had a number of false starts before I could tolerate the therapy. The newer machines are so much better and quieter. At present I am using a Resmed Autoset Spirit 11 which I really like.
Great post about masks - will look out what I have tried - I've tried quite a few- mostly nasal and a few full face. It does seem like it would be a good idea to be able to do mask swaps - seems such a waste . I know I have a lot of bits that I am not using that might be useful for someone else.
Good sleeps everyone,
Lisa
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Permalink Reply by Kath Hope on
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Pleased you like the site Lisa. My goodness, you'll have noticed a big difference in the machines over the last 20 years. I've spoken to many people who gave up with the old machines, but have re-started their treatment now that they've made them much smaller and quieter. Soon they'll be making us coffee to wake up to :)
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Permalink Reply by katie on
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This is just what me and my son Andrew needs (I think more me) but Andrew is 4 and has Obstructive and Central sleep apnea and sleeps with a CPAP machine. His life has been a very hard journey and we are so blessed to even have him here with us now. It has been hard on me because he doesn't really understand but I feel as though I have no one to talk to, I feel very alone and even flusterated sometimes that he has this. I am just so excited that I found this site. I think it will help me to help Andrew.
Thanks
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Hi all, I'm having a sleepless night and thought I'd do a bit of hunting around to see if there is anyone else out there with similar problems and questions as i have.
Nice to see I'm not the only one. I've been looking around the forum and it looks to be pretty cool with a fair bit of info. Hope to chat soon, I do have a few questions to ask if know one minds, but might try again for the dreaded sleep to come.
Cheers!!
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It's nice to have you here Lian, and please feel free to ask any questions by starting new discussions, and we'll try to help you :)
Lian Hood said:
Hi all, I'm having a sleepless night and thought I'd do a bit of hunting around to see if there is anyone else out there with similar problems and questions as i have.
Nice to see I'm not the only one. I've been looking around the forum and it looks to be pretty cool with a fair bit of info. Hope to chat soon, I do have a few questions to ask if know one minds, but might try again for the dreaded sleep to come.
Cheers!!
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Permalink Reply by Joanne Hollett on
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Although I suspected I had sleep apnoea 5 years ago (my then boss was a hospital consultant and I fell asleep during a meeting); I have only recently been diagnosed. I am currently on trial with a CPAP and last night was night 4. So far night 1 I removed mask because it got too hot, night 2 I had a panic attack, hyperventilated and ended up with a numb top lip, Thursday night no matter which way I adjusted the nasal mask it leaked, first my left eye got the blast of air, I adjusted mask, then my left cheek got it, again I adjusted mask, then the air blew right down my chest, finally I admitted defeat, took mask off gave up... and went to sleep. Perhaps because last night was Friday and I knew I didn't have to get up for work this morning (therefore was more relaxed), I managed to sleep right through until 5 a.m. wearing the mask (and I only woke up then because I needed the loo). I am aware I tossed and turned a bit but the mask stayed put and I wasnt aware of any obvious leaks... hopefully tonight when I go to stay with my family it will be better again. Whatever happens, I am going to perservere. I found this forum by chance yesterday and Kath gave me a very warm welcome (thank you Kath), already I have found lots of support just from reading what you have all posted. I'm just so grateful that I found this forum. It is a comfort to know that I am not alone anymore. Best wishes.
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Just on my way to bed (too late as usual LOL) but I just wanted to say how positive your nights are getting which is great news. I hope you are in the land of nod as I type, but just a little tip for you...... if you wake to go to the loo then try to just unhook the part where the mask connects to the hose only and keep the mask on your face. That way, you won't have to try to put the mask back on whilst you're still needing more sleep and can simply put the hose back on. Looking forward to hearing how tonight went whilst with your family!
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Thanks for the tip Kath, this is exactly what I did (in fact the hospital also advised it) I managed to keep the mask on until 7:15 a.m, I have a sore nose but I'm ever so proud of myself... :-)
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It must be two and a half years now since I started the cpap therapy. (Doesn't time go quickly when you are enjoying yourself?!!) I still have difficulties with getting the numerous masks to seal and still get disturbed nights but all in all I am so much better (eight stone lost now) and I am so grateful to the machine and even to the darth look. (Fashion statement!)
As my face continues to change shape, I find the seal hard to achieve again. I buy different sizes of mask and I try to use the nasal masks including gel ones and full face masks plus the new self adjusting one on different nights. One night one will work better and another night it will be a different model!
So hard to get the correct size bought and they cost a lot to get the fit wrong. It is very sad that we can't have a fitting for masks and only purchase when we know they will fit! There will eventually be a solution to the problems but please, hang in there everyone. My life has come back to me and only thanks to cpap.
Persevere; especially the children who have their whole lives ahead of them. This isn't the end of the world and life will be so much better soon if you keep trying; cpap becoming a norm and more and more manageable as we get used to it all.
I still think the hose lift is the best invention ever and anyone who hasn't yet tried one should take the plunge. Kath is right, never take the mask off when you go to the loo in the night. Just disconnect the hose and then you don't have to try to readjust the thing when you are still so tired. Rosemary
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Correction - I just saw a sizing guide on the Phillips Respironices site. This needs investigating! Rosemary
Rosemary Kemp said:It must be two and a half years now since I started the cpap therapy. (Doesn't time go quickly when you are enjoying yourself?!!) I still have difficulties with getting the numerous masks to seal and still get disturbed nights but all in all I am so much better (eight stone lost now) and I am so grateful to the machine and even to the darth look. (Fashion statement!)
As my face continues to change shape, I find the seal hard to achieve again. I buy different sizes of mask and I try to use the nasal masks including gel ones and full face masks plus the new self adjusting one on different nights. One night one will work better and another night it will be a different model!
So hard to get the correct size bought and they cost a lot to get the fit wrong. It is very sad that we can't have a fitting for masks and only purchase when we know they will fit! There will eventually be a solution to the problems but please, hang in there everyone. My life has come back to me and only thanks to cpap.
Persevere; especially the children who have their whole lives ahead of them. This isn't the end of the world and life will be so much better soon if you keep trying; cpap becoming a norm and more and more manageable as we get used to it all.
I still think the hose lift is the best invention ever and anyone who hasn't yet tried one should take the plunge. Kath is right, never take the mask off when you go to the loo in the night. Just disconnect the hose and then you don't have to try to readjust the thing when you are still so tired. Rosemary
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Thank you!
Rosemary Kemp said:
Correction - I just saw a sizing guide on the Phillips Respironices site. This needs investigating! Rosemary
Rosemary Kemp said:It must be two and a half years now since I started the cpap therapy. (Doesn't time go quickly when you are enjoying yourself?!!) I still have difficulties with getting the numerous masks to seal and still get disturbed nights but all in all I am so much better (eight stone lost now) and I am so grateful to the machine and even to the darth look. (Fashion statement!)
As my face continues to change shape, I find the seal hard to achieve again. I buy different sizes of mask and I try to use the nasal masks including gel ones and full face masks plus the new self adjusting one on different nights. One night one will work better and another night it will be a different model!
So hard to get the correct size bought and they cost a lot to get the fit wrong. It is very sad that we can't have a fitting for masks and only purchase when we know they will fit! There will eventually be a solution to the problems but please, hang in there everyone. My life has come back to me and only thanks to cpap.
Persevere; especially the children who have their whole lives ahead of them. This isn't the end of the world and life will be so much better soon if you keep trying; cpap becoming a norm and more and more manageable as we get used to it all.
I still think the hose lift is the best invention ever and anyone who hasn't yet tried one should take the plunge. Kath is right, never take the mask off when you go to the loo in the night. Just disconnect the hose and then you don't have to try to readjust the thing when you are still so tired. Rosemary
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