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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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Yes, they're very expensive for such thin basic liners. When we used to sell them I suggested a few times they make them slightly thicker so they could be watched. Interestingly they didn't take up my suggestion
That's why I'll never be rich as I'm too busy trying to help people get things cheaper lol.
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Permalink Reply by melanie appleby on
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hi all , we have taken deborah up on her offer and we can not thank her enough. and the same goes for all of you on here and the fb page. i really can not thank you enough for the help you are offering us you are amazing people. i just wish the hospital was as helpful as you guys. we next go to london to see the consultant in july and i will not leave his room until i am satisfied that he has listened to kev and taken his condition seriously. i will also now be making sure kev wears his mask when ever he sleeps. Terry you say the associated illnesses it can cause heart attack, stroke, diabetes, depression etc.
kev has diabetes type 2 (meds & insulin) and meds for depression. he is also on a lot of pain meds including morphine and diazepam for degenerative form of arthritis in his spine. and underactive thyroid.
i often have to help him with his machine when he has taken his morphine as he is so heavily medicated he does not know what he is doing.. it is like every thing we plod along taking each day as it comes.
once again thank you so much you have all been so helpful . it really means alot.
love mel x
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It's our pleasure Mel. Kev has got several conditions which is hugely linked with sleep apnoea - depression, diabetes type 2 and underactive thyroid. On top of this, the morphine and diazepam will be making the sleep apnoea worse. However, the most important thing is to get him on good CPAP therapy and some of his conditions should improve with safe restorative sleep, and hopefully his depression will start to ease too. Thankfully, he has a caring wife too, supporting and caring for him through it all. I did a blog on depression you might be interested in reading, along with the comments other readers have put http://www.sleepapnoeablog.com/the-link-between-sleep-apnoea-depres...
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Permalink Reply by Terry Vella on
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Mel, I agree with everything Kath has said, Kev needs to get on and stay on his CPAP therapy. He also needs to try to go into this with a positive attitude, he can read on this site and other sites the amount of people CPAP has helped. Personally I was diagnosed with depression two years before I was diagnosed with sleep apnea and on 4 different meds and they kept upping and upping them. After 3-6 months on CPAP, the symptoms started lifting and I was off all neds after a year and now another year later I go to the gym everyday and walk 5 kilometers each night. I'm not saying Kev will get to that stage because he has otther illness's but you want him to have a comfortable and normal life as possble.
The other thing is you and he needs to know he is not alone. Even though we are all different we do have an affinity of how he is feeling with the sleep apnea as we have been there and people that don't have it don't understand what it is like to have to wear a mask to sleep everynight.
We are not only here to answer yours and Kev's questions but to give support. as kath also said he is very lucky to have such a supportive wife and I encourage him to get on here if he can so he doesn't feel so along and if possible read up either on here or other websites about our illness because knowledge is power.
If you need both of you can message me at anytime and keep asking questions.
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Hi Kath thank you for your reply. i did take a look at your blog and since joining your page a lot of kev's conditions are now making sence. he does not always no when he is feeling depressed but i can usually tell, he used to be a happy go lucky kind of guy but since being diagnosed with the different conditions our life has had to change. he has had to stop some hobbies and others he can only do if he has people with him. the main condition he hates is the diabetes , he hates the fact he has to eat 3 times a day when most of the time he is not hungry i feel i am always nagging him ( have you taken your meds have you done your insulin now you have to eat) if i was not to say this to him he would not remember to do these simply tasks. its seems like a vicious circle..
Kath Hope said:It's our pleasure Mel. Kev has got several conditions which is hugely linked with sleep apnoea - depression, diabetes type 2 and underactive thyroid. On top of this, the morphine and diazepam will be making the sleep apnoea worse. However, the most important thing is to get him on good CPAP therapy and some of his conditions should improve with safe restorative sleep, and hopefully his depression will start to ease too. Thankfully, he has a caring wife too, supporting and caring for him through it all. I did a blog on depression you might be interested in reading, along with the comments other readers have put http://www.sleepapnoeablog.com/the-link-between-sleep-apnoea-depres...
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thank you Terry, kev is not really a person for reading. i am the one that does the reading and searching for solutions. to be honest he wouldn't have a clue the names of his conditions or the name of any of his meds. i suppose i have taken it upon my self to be his carer even tho i am not recognized as his carer. he does try and go for walks to the local lake with our daughters boyfriend as they both like fishing and shooting. he don't tend to go fishing as much now because of all the gear he can not carry it all.
since joining this site i can not thank you all enough for all your support i feel a bit of weight has lifted from my shoulders as i feel i can understand kev's sleep apnea a bit more. and i no there is a few things i would like to ask his consultant when we see him next.
Terry Vella said:Mel, I agree with everything Kath has said, Kev needs to get on and stay on his CPAP therapy. He also needs to try to go into this with a positive attitude, he can read on this site and other sites the amount of people CPAP has helped. Personally I was diagnosed with depression two years before I was diagnosed with sleep apnea and on 4 different meds and they kept upping and upping them. After 3-6 months on CPAP, the symptoms started lifting and I was off all neds after a year and now another year later I go to the gym everyday and walk 5 kilometers each night. I'm not saying Kev will get to that stage because he has otther illness's but you want him to have a comfortable and normal life as possble.
The other thing is you and he needs to know he is not alone. Even though we are all different we do have an affinity of how he is feeling with the sleep apnea as we have been there and people that don't have it don't understand what it is like to have to wear a mask to sleep everynight.
We are not only here to answer yours and Kev's questions but to give support. as kath also said he is very lucky to have such a supportive wife and I encourage him to get on here if he can so he doesn't feel so along and if possible read up either on here or other websites about our illness because knowledge is power.
If you need both of you can message me at anytime and keep asking questions.
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Permalink Reply by simon howlett on
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would it be possible that you could send me the link to making liners
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This was the discussion where we spoke about it Simon http://hope2sleepguide.co.uk/forum/topics/masks-and-air-leaks
simon howlett said:would it be possible that you could send me the link to making liners
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Yes Mel, when we get diagnosed with sleep apnoea, suddenly a lot of our past makes sense, whether it be our physical, emotional or mental health, as untreated OSA usually manages to cause problems in at least one of these areas - if not all! Let's hope that when Kev gets into constant good CPAP therapy you might start to see some of the old Kev back again
melanie appleby said:
Hi Kath thank you for your reply. i did take a look at your blog and since joining your page a lot of kev's conditions are now making sence. he does not always no when he is feeling depressed but i can usually tell, he used to be a happy go lucky kind of guy but since being diagnosed with the different conditions our life has had to change. he has had to stop some hobbies and others he can only do if he has people with him. the main condition he hates is the diabetes , he hates the fact he has to eat 3 times a day when most of the time he is not hungry i feel i am always nagging him ( have you taken your meds have you done your insulin now you have to eat) if i was not to say this to him he would not remember to do these simply tasks. its seems like a vicious circle..
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Permalink Reply by Wanda Polk on
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Deborah,
Sorry for the delay in providing feedback on the Eson. The mask is extremely comfortable. My RT at the DME company wears it too and he loves it. My RT says he has not had a single complaint from any of his patients that are using the mask. I have absolutely no nose problems with the mask. I am still using it and occasionally alternating a nasal pillows mask. I did note that I do not quite get as low nightly AHI reading with the Eson as I did with the True Blue. I would get 1.9 frequently with the True Blue but that has only happened once with the Eson. But I think it is a good trade off since I do not have to wear a nasal pad with the Eson.
Wanda Polk said:Hi Deborah,
Welcome! I am excited that you are here. Next week, I will be insurance eligible to use the Eson Nasal Mask, I am excited about the possibility that it can alleviate some of my nose issues. BTW, I live in the US.
Deborah Wainwright said:Ha, sorry, I meant having a daughter results in a lack of sleep for me! She doesn't have any problems!
Kath Hope said:Have you ever had your daughter tested Debi? I've had my son tested for the same reasons as your daughter, plus lots of brain confusion. He came up with a low AHI of 6.8 and obviously a slim 17 year old isn't a candidate for CPAP, although he probably will get worse as he gets older. My daughter refuses to be tested, and she's a nurse so should know better!!
Good to hear you're passionate at your job (sleeping with the devices by choice) and spending Sat evening on our forum ;)
Deborah Wainwright said:I'm on here using my posh name, but actually I am known as Debi. I'm a mum, don't have sleep apnoea, but do have a 16 year old daughter which, sometimes, results in the same lack of sleep and accompanying headache! I've slept on an S9, a System One and an Icon just to 'understand'.
I work for Fisher and Paykel as country manager for the Uk. All views definitely my own (that's the legal bit!) and have used my name for transparency.
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Mel, a couple of suggestions, write down all your questions so you don't forget any and make sure they answer them all and make sure you understand their responses.
As Kath mentioned earlier some of the meds Kev is on are actually not good for sleep apnea but he may need them for pain, I would also ask the question, whether he can lower the dose or eventually get off them.
I know this is a long shot but would ask if he can get either a data capable machine like the Resmed Elite or preferably the Resmed Autoset, they are more expensive machines and obviously you couldn't afford to buy them but them are the best machines for Kev.
The difference between machines are the Elite is a constant pressure machine like Kev has now so blows air at just one pressure whereas the Autoset or an automatic machine has a low and high pressure say 4 – 15
The machine detects when Kev needs more pressure and raises to the pressure require, then lowers itself automatically to the low pressure.
This has two affects, it is more comfortable and basically does all the work for Kev, but they do come at a price, I know Kath had to purchase hers herself, which you wouldn’t be able to afford.
The other benefit is people are normally more compliant as lots of people don’t like a constant high pressure all night.
I know it’s a very long shot but can’t hurt to ask, all they can do is say no and if they did I would ask why not?
With the depression, it's is best if Kev can get out and walk especially if it is a sunny day and get out in the sun, with depression we should do the opposite to what our brain says. I have been going to at outpatient course every Saturday morning for the last 3 years for my depression where we learn how to accept the illness's we have and how to deal with them. I don’t know it he has ever tried thing like meditation with depression we have thought going through our brains and thoughts are just thoughts they can’t hurt us but in our state we don’t know that. If we can calm the mind it may help.
Let us know how you go at the consultant.
melanie appleby said:thank you Terry, kev is not really a person for reading. i am the one that does the reading and searching for solutions. to be honest he wouldn't have a clue the names of his conditions or the name of any of his meds. i suppose i have taken it upon my self to be his carer even tho i am not recognized as his carer. he does try and go for walks to the local lake with our daughters boyfriend as they both like fishing and shooting. he don't tend to go fishing as much now because of all the gear he can not carry it all.
since joining this site i can not thank you all enough for all your support i feel a bit of weight has lifted from my shoulders as i feel i can understand kev's sleep apnea a bit more. and i no there is a few things i would like to ask his consultant when we see him next.
Terry Vella said:Mel, I agree with everything Kath has said, Kev needs to get on and stay on his CPAP therapy. He also needs to try to go into this with a positive attitude, he can read on this site and other sites the amount of people CPAP has helped. Personally I was diagnosed with depression two years before I was diagnosed with sleep apnea and on 4 different meds and they kept upping and upping them. After 3-6 months on CPAP, the symptoms started lifting and I was off all neds after a year and now another year later I go to the gym everyday and walk 5 kilometers each night. I'm not saying Kev will get to that stage because he has otther illness's but you want him to have a comfortable and normal life as possble.
The other thing is you and he needs to know he is not alone. Even though we are all different we do have an affinity of how he is feeling with the sleep apnea as we have been there and people that don't have it don't understand what it is like to have to wear a mask to sleep everynight.
We are not only here to answer yours and Kev's questions but to give support. as kath also said he is very lucky to have such a supportive wife and I encourage him to get on here if he can so he doesn't feel so along and if possible read up either on here or other websites about our illness because knowledge is power.
If you need both of you can message me at anytime and keep asking questions.
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Permalink Reply by Deborah Wainwright on
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Hi Wanda,
Thanks for the fab feedback, we are very pleased with how Eson is doing and I am delighted you are getting good results. Not sure why the change in AHI and perhaps this is something to chat to your sleep tech about.
Wanda Polk said:Deborah,
Sorry for the delay in providing feedback on the Eson. The mask is extremely comfortable. My RT at the DME company wears it too and he loves it. My RT says he has not had a single complaint from any of his patients that are using the mask. I have absolutely no nose problems with the mask. I am still using it and occasionally alternating a nasal pillows mask. I did note that I do not quite get as low nightly AHI reading with the Eson as I did with the True Blue. I would get 1.9 frequently with the True Blue but that has only happened once with the Eson. But I think it is a good trade off since I do not have to wear a nasal pad with the Eson.
Wanda Polk said:Hi Deborah,
Welcome! I am excited that you are here. Next week, I will be insurance eligible to use the Eson Nasal Mask, I am excited about the possibility that it can alleviate some of my nose issues. BTW, I live in the US.
Deborah Wainwright said:Ha, sorry, I meant having a daughter results in a lack of sleep for me! She doesn't have any problems!
Kath Hope said:Have you ever had your daughter tested Debi? I've had my son tested for the same reasons as your daughter, plus lots of brain confusion. He came up with a low AHI of 6.8 and obviously a slim 17 year old isn't a candidate for CPAP, although he probably will get worse as he gets older. My daughter refuses to be tested, and she's a nurse so should know better!!
Good to hear you're passionate at your job (sleeping with the devices by choice) and spending Sat evening on our forum ;)
Deborah Wainwright said:I'm on here using my posh name, but actually I am known as Debi. I'm a mum, don't have sleep apnoea, but do have a 16 year old daughter which, sometimes, results in the same lack of sleep and accompanying headache! I've slept on an S9, a System One and an Icon just to 'understand'.
I work for Fisher and Paykel as country manager for the Uk. All views definitely my own (that's the legal bit!) and have used my name for transparency.
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