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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 Kath Hope on
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Thanks for the tip Diane - I'm using the Garnier one which my friend bought me. Wonder if she was trying to tell me something
When it runs out I'll be sure to check out the cheaper one thanks.
Diane Finlayson said:I don't know if anyone else has problems with their face feeling (and looking!) "crumpled" around the eyes in the morning, since I started using the CPAP machine? I have found a little eye roll-on from "Simple" which is unscented, really cools and tightens the skin and costs about £5, about half what you pay for Garnier or other brands. Thought I would share my discovery. I keep it by a window that's open overnight, so it's really refreshing when you do small circular applications round your eyes. Diane
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Permalink Reply by melanie appleby on
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Hi Kath and Mike, thank you for allowing me to join your forum. i personally don't have sleep apnea but my husband does. he uses a resmed s9 machine with a humidifier attached. not only does he have sleep apnea he is diabetic type2 (insulin and meds) he also has Lumbar spondylosis which is controlled with numerous amounts of medication including oramorph(morphine) and diazepam. i am basically a carer for him, just not recognized as a carer. he was basically diagnosed nov 2011 we have a letter from a sleep specialist stating hispworth score was 11 over 24 and his 1st sleep test showed AHI of 46.he was then started on cpap pressure 10 it states his diagnosis ( obstructive sleep apnea syndrome) then a year later we had another letter say ( severe osa on cpap) and they changed his pressure to 15. since being diagnosed in 2011 we have been to the clinic about 4 times all in all. every time we get an appointment they postpone it for a few months down the line. i really don't rate the hospital very much or the physio. we have been told kev is only allowed 1 mask a year.
the consultants have not really told us much about kev's condition if anyone can help by what i have stated we would really appreciate any info. thank you for reading Mel
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Permalink Reply by Deborah Wainwright on
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Hello Melanie,
Sadly, a lot of services are run by under-resourced clinicians with more patients to see than staff can deal with. Your husband's compliance with his therapy is very important to his future health (and I am glad to see he is on a humidifier!) so if you are worried or want to discuss his therapy then a visit to the clinic is important. I see that you have been postponed on a few occassions so you could contact the consultant and I recommend you enlist the support of your GP who can help you with this. Make sure you know what it is that you want to know more about ... It is usual to have an annual change of mask and some patients on this forum buy their own and have their own collections! Perhaps you could let us know what your specific concerns are and we can help you shape your worries into good questions to ask the consultant. I hope all this helps and good luck!
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Permalink Reply by Roz B on
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melanie appleby said:Hi Kath and Mike, thank you for allowing me to join your forum. i personally don't have sleep apnea but my husband does. he uses a resmed s9 machine with a humidifier attached. not only does he have sleep apnea he is diabetic type2 (insulin and meds) he also has Lumbar spondylosis which is controlled with numerous amounts of medication including oramorph(morphine) and diazepam. i am basically a carer for him, just not recognized as a carer. he was basically diagnosed nov 2011 we have a letter from a sleep specialist stating hispworth score was 11 over 24 and his 1st sleep test showed AHI of 46.he was then started on cpap pressure 10 it states his diagnosis ( obstructive sleep apnea syndrome) then a year later we had another letter say ( severe osa on cpap) and they changed his pressure to 15. since being diagnosed in 2011 we have been to the clinic about 4 times all in all. every time we get an appointment they postpone it for a few months down the line. i really don't rate the hospital very much or the physio. we have been told kev is only allowed 1 mask a year.
the consultants have not really told us much about kev's condition if anyone can help by what i have stated we would really appreciate any info. thank you for reading Mel
Hi Melanie, I don't know what area you are in but I have a fantastic sleep ENT consultant and without him I would still have severe OSA with an AHI of 62 as I didn't want to use CPAP therapy, but he listened and I researched for my own benefit and scared myself in going back to him.
I know there are cuts being made everywhere, even Philips Respironics were telling me this week they have to have everything authorised by the consultant like replacement masks etc, but I do know he will see people out if the area.
if you speak to Kath privately she has his details and she has met him too. It may not be possible but if your GP agrees a referral I am sure he will see your husband and you can be both reassured.
I hope Kath doesn't mind me putting things on here for you to speak to her privately but I know that without him I wouldn't have been Vera year down the line using my CPAP machine with my AHI going from 62 to under 5.
I wish you luck xx
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Permalink Reply by Terry Vella on
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Welcome Melanie and Kev, sorry to hear abot Kev's illness's but it sound like he is in good hands with a wife like you looking afyrt him. You have come to a good place for help and support for sleep apnea patients. Can you tell us the brand and model of both the CPAP he uses and the mask. I'm not sure what you want to know about the condition but we can try to answer any of your questions. Please just ask.
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Thank you for all your replies
The brand and model of Kev's CPAP machine is a ResMed Escape S9 with a H5i humidifier and he uses a ComfortGel Blue full face mask. We've tried various different masks before this and the mask he is currently using is broken but we've been informed that if we wanted a replacement we would be charged so they have provided Kev with a basic alternative but that leaks even more than the broken mask.
We've tried using mask liners to ease the leaking and they have helped a little but we can't afford these on a regular basis as we are in receipt of benefits due to Kev's various disabilities.
The last appointment we had with Kev's sleep apnea consultant was the 19th of March and they said they wanted him to do another sleep study and that after they had the results from this study they would be able to sort out Kev's masks and pressure.
The sleep study was done between the 10th and 15th of April and we have still not received the results of this.
We were due to see Kev's consultant on the 25th of June but this has now been postponed once again until the 9th of July. Postponing of Kev's appointments at Barts London Chest Hospital are a frequent occurrence and we have only seen his consultant or one of his under-hands 5 times in nearly 2 years and when we do actually manage to see his consultant they don't seem to have enough time or concern to answer our questions or take our complaints about the physiotherapist or ill fitting masks seriously.
Two of the most important questions we need answering are whether Kev should wear his mask anytime he goes to sleep and also what the affects of not wearing his mask during sleep are as we have been told different things by different professionals.
Thank you for reading and I look forward to your responses.
Mel
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Hi Melanie,
I can't bear this! please email me on deborah.wainwright@fphcare or call me on 07974023952 and I will arrange to get a full face mask to you that Kev won't have tried because it is brand new. If you don't get along with it that is fine .... and feel free to say so on this site.
As to the when and how of mask wearing. The guidelines suggest that CPAP should be worn for a minimum of 4 hours in a stretch every night. If Kev can do more than that, then it will benefit him. As to wearning CPAP during the day when he is dozing that is up to him ... but I would! It would help to know what size his mask is too.
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That's really kind of you Deb. I've been helping Mel in the FB Groups, so will tell her she has a message on here
Deborah Wainwright said:Hi Melanie,
I can't bear this! please email me on deborah.wainwright@fphcare or call me on 07974023952 and I will arrange to get a full face mask to you that Kev won't have tried because it is brand new. If you don't get along with it that is fine .... and feel free to say so on this site.
As to the when and how of mask wearing. The guidelines suggest that CPAP should be worn for a minimum of 4 hours in a stretch every night. If Kev can do more than that, then it will benefit him. As to wearning CPAP during the day when he is dozing that is up to him ... but I would! It would help to know what size his mask is too.
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I think you got the answer to the question Mel about whether to use it every time Kev sleeps over on the FB Group, and the answer was 'YES.'
Roz - I certainly don't mind you telling people to contact me privately, as I'm always happy to help when I can.
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Melanie, thats a fantastic offer from Deborah, make sure you take it up and let Kev give it a try. On the Resmed Escape, even though all Resmed machines are good machines the Escape range is the lowest model in the range and not data capable, what that means is it still does the job but if it was the next model up, I could have shown you how to read his data daily with free software. Kath has explained why these models get handed out to you guys in the UK and the Australian system is no better but that doesn't help and it is a very sad state of affairs when we can't give other human beings the best machines possible or at least data capable machine so we can manage our illness, sorry just my rant. On the mask liner, Kath, I'm not sure if Becky from Remzzz is a member on here if not I will try to contact her on DS and see if she can organise anything, I'm sure Remzzz would love to help out. If not, Melanie, don't tell anyone but Kath and I make our our mask liners which are fairly cheap. Kev needs them not only for leaks but also for comfort. I'll give you the instructions if we don't get anywhere from Remzzz.
On when he wears it whenever he sleeps, Kath has answered it, but everytime even naps.
The associated illness's it can cause are heart attack, stroke, diabeties, depression etc and some even think cancer.
The obvious effect is he stops breathing and that is bad enough but when he stops breathing he does get the vital blood and oxygen he needs to his heart and brain and his stress levels will increase. He also wakes up either conciously or sub conciously evertime he stops breathing, this means he never get through the proper sleep stages he needs for rest and healing of his body. Hope that answers some of your questions, but keep asking us.
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Terry, Mel's already been using the RemZzzs liners and at £20 a month they're not a viable option, although I've already shown her the discussion we had on here where you and I told Amanda how to make them so they can easily wash them , which is what she's doing.
Terry Vella said:Melanie, thats a fantastic offer from Deborah, make sure you take it up and let Kev give it a try. On the Resmed Escape, even though all Resmed machines are good machines the Escape range is the lowest model in the range and not data capable, what that means is it still does the job but if it was the next model up, I could have shown you how to read his data daily with free software. Kath has explained why these models get handed out to you guys in the UK and the Australian system is no better but that doesn't help and it is a very sad state of affairs when we can't give other human beings the best machines possible or at least data capable machine so we can manage our illness, sorry just my rant. On the mask liner, Kath, I'm not sure if Becky from Remzzz is a member on here if not I will try to contact her on DS and see if she can organise anything, I'm sure Remzzz would love to help out. If not, Melanie, don't tell anyone but Kath and I make our our mask liners which are fairly cheap. Kev needs them not only for leaks but also for comfort. I'll give you the instructions if we don't get anywhere from Remzzz.
On when he wears it whenever he sleeps, Kath has answered it, but everytime even naps.
The associated illness's it can cause are heart attack, stroke, diabeties, depression etc and some even think cancer.
The obvious effect is he stops breathing and that is bad enough but when he stops breathing he does get the vital blood and oxygen he needs to his heart and brain and his stress levels will increase. He also wakes up either conciously or sub conciously evertime he stops breathing, this means he never get through the proper sleep stages he needs for rest and healing of his body. Hope that answers some of your questions, but keep asking us.
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Thanks Kath, I know they are expensive, I could probably afford to buy them but the ones I make are just as good if not better and for $10, I make enough to last me about 3 months.
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