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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I'll have to look into this oximeter device. I hadn't heard of one before yours. Can you give me the full description and where you got it from? Rosemary

P.S. I just re-read my last message to you and saw the typos! I wish this thing has a spell checker!

Poeple!! Hopsital!!! Wonderful!
John Hedley said:

Hi Rosemary

Thanks.   I think you will find that modern pulse oximeters are very accurate and have been proved to be so in various tests.   Your hospital, like mine, appears to believe that the patients should know nothing and simply press on in happy ignorance without accurate monitoring by the hospital, which then does not happen.  

I have no regrets in buying and using my oximeter - it has shown me that the hospital's setting is simply way too low for me, and I feel far better already!

Very best wishes.   John

.


Rosemary Kemp said:

Thanks for your reply John.

 

It is amazing isn't it? The reason that my hospital want to believe that I am "getting better" is that as I have lost so much weight, my apnoeas have receded. It was Kath who made me aware of how many fewer apnoeas I was having last year but the hospital are loath to carry out further sleep studies that they can avoid. So I am expected to prove the need for a further study!

 

They don't encourage us to do home sleep studies either. They have reasons for this too! Apparently these aren't reliable and only the hopsital do them "properly". Lots of poeple "know best" eh?

 

Rosemary

John Hedley said:

Hi Rosemary

 

Great to hear from you.    I never cease to be amzed by the stories I hear about hospital sleep clinics.   Mine is just the same!   

I have recently invested in a pulse oximeter (CMS 50F) because I was fed up with not knowing whether my CPAP was set to the correct pressure.   I have only had the unit  for a week but have found it invaluable in actually telling me what is going on overnight.  I was using 10cm (set by the hospital - "we set them all at 10cm") but I found that the report figures were way out and my SpO2 levels were way too low.  I am currently using 13 cm and the improvement in SpO2 figures is amazing.

I simply don't understand your hospital telling you that - Fine if they want to repeat the overnight study but why on earth inflict your body with OSA effects for a week to "see how you go" - amazing!

I am still a complete amateur on reading the report results at the moment, although I am trying to find out more!

If you are interested in a pulse oximeter I am happy to give you more info - they seem to be very popular in the US, and we are only now catching up!

Do let me know how you get on at the checkup

All the best

John

 

Rosemary Kemp said:



Hi John,

 

Nice to meet you. As I approach the second anniversary of being on cpap, the way I have been told to see if I need another sleep study is to stop cpap for about a week and see how I go! I tried this it at one point and slept so badly that I can't possibly take that route. So we'll see what they have to say to me when I go for the annual check up! I know that I am having far fewer apnoeas but whether the pressure on the machine should change or whatever, seems to be difficult to determine! Good old hospitals!

Bye for now,

Rosemary Kemp  

 

Hi Rosemary

Thanks.  I'm happy to help.   However I think I might be breaking forum rules if I put company names here.  I am not sure whether you can email me via the forum, but if not please ask Kath for my email address and I will give you as much info and help as I can.

Regards  John

PS Don't worry about any typos - I'm the same!

 

Rosemary Kemp said:

I'll have to look into this oximeter device. I hadn't heard of one before yours. Can you give me the full description and where you got it from? Rosemary

P.S. I just re-read my last message to you and saw the typos! I wish this thing has a spell checker!

Poeple!! Hopsital!!! Wonderful!
John Hedley said:

Hi Rosemary

Thanks.   I think you will find that modern pulse oximeters are very accurate and have been proved to be so in various tests.   Your hospital, like mine, appears to believe that the patients should know nothing and simply press on in happy ignorance without accurate monitoring by the hospital, which then does not happen.  

I have no regrets in buying and using my oximeter - it has shown me that the hospital's setting is simply way too low for me, and I feel far better already!

Very best wishes.   John

.


Rosemary Kemp said:

Thanks for your reply John.

 

It is amazing isn't it? The reason that my hospital want to believe that I am "getting better" is that as I have lost so much weight, my apnoeas have receded. It was Kath who made me aware of how many fewer apnoeas I was having last year but the hospital are loath to carry out further sleep studies that they can avoid. So I am expected to prove the need for a further study!

 

They don't encourage us to do home sleep studies either. They have reasons for this too! Apparently these aren't reliable and only the hopsital do them "properly". Lots of poeple "know best" eh?

 

Rosemary

John Hedley said:

Hi Rosemary

 

Great to hear from you.    I never cease to be amzed by the stories I hear about hospital sleep clinics.   Mine is just the same!   

I have recently invested in a pulse oximeter (CMS 50F) because I was fed up with not knowing whether my CPAP was set to the correct pressure.   I have only had the unit  for a week but have found it invaluable in actually telling me what is going on overnight.  I was using 10cm (set by the hospital - "we set them all at 10cm") but I found that the report figures were way out and my SpO2 levels were way too low.  I am currently using 13 cm and the improvement in SpO2 figures is amazing.

I simply don't understand your hospital telling you that - Fine if they want to repeat the overnight study but why on earth inflict your body with OSA effects for a week to "see how you go" - amazing!

I am still a complete amateur on reading the report results at the moment, although I am trying to find out more!

If you are interested in a pulse oximeter I am happy to give you more info - they seem to be very popular in the US, and we are only now catching up!

Do let me know how you get on at the checkup

All the best

John

 

Rosemary Kemp said:



Hi John,

 

Nice to meet you. As I approach the second anniversary of being on cpap, the way I have been told to see if I need another sleep study is to stop cpap for about a week and see how I go! I tried this it at one point and slept so badly that I can't possibly take that route. So we'll see what they have to say to me when I go for the annual check up! I know that I am having far fewer apnoeas but whether the pressure on the machine should change or whatever, seems to be difficult to determine! Good old hospitals!

Bye for now,

Rosemary Kemp  

 

Hi John,

 

I'll ask Kath for your email address. I don't know the forum's rules but suspect that you are right! I think it would be great to know more about my apnoeas than my machine tells me. They have disabled most of its functions to keep me in the dark!

 

Rosemary  

John Hedley said:

Hi Rosemary

Thanks.  I'm happy to help.   However I think I might be breaking forum rules if I put company names here.  I am not sure whether you can email me via the forum, but if not please ask Kath for my email address and I will give you as much info and help as I can.

Regards  John

PS Don't worry about any typos - I'm the same!

 

Rosemary Kemp said:

I'll have to look into this oximeter device. I hadn't heard of one before yours. Can you give me the full description and where you got it from? Rosemary

P.S. I just re-read my last message to you and saw the typos! I wish this thing has a spell checker!

Poeple!! Hopsital!!! Wonderful!
John Hedley said:

Hi Rosemary

Thanks.   I think you will find that modern pulse oximeters are very accurate and have been proved to be so in various tests.   Your hospital, like mine, appears to believe that the patients should know nothing and simply press on in happy ignorance without accurate monitoring by the hospital, which then does not happen.  

I have no regrets in buying and using my oximeter - it has shown me that the hospital's setting is simply way too low for me, and I feel far better already!

Very best wishes.   John

.


Rosemary Kemp said:

Thanks for your reply John.

 

It is amazing isn't it? The reason that my hospital want to believe that I am "getting better" is that as I have lost so much weight, my apnoeas have receded. It was Kath who made me aware of how many fewer apnoeas I was having last year but the hospital are loath to carry out further sleep studies that they can avoid. So I am expected to prove the need for a further study!

 

They don't encourage us to do home sleep studies either. They have reasons for this too! Apparently these aren't reliable and only the hopsital do them "properly". Lots of poeple "know best" eh?

 

Rosemary

John Hedley said:

Hi Rosemary

 

Great to hear from you.    I never cease to be amzed by the stories I hear about hospital sleep clinics.   Mine is just the same!   

I have recently invested in a pulse oximeter (CMS 50F) because I was fed up with not knowing whether my CPAP was set to the correct pressure.   I have only had the unit  for a week but have found it invaluable in actually telling me what is going on overnight.  I was using 10cm (set by the hospital - "we set them all at 10cm") but I found that the report figures were way out and my SpO2 levels were way too low.  I am currently using 13 cm and the improvement in SpO2 figures is amazing.

I simply don't understand your hospital telling you that - Fine if they want to repeat the overnight study but why on earth inflict your body with OSA effects for a week to "see how you go" - amazing!

I am still a complete amateur on reading the report results at the moment, although I am trying to find out more!

If you are interested in a pulse oximeter I am happy to give you more info - they seem to be very popular in the US, and we are only now catching up!

Do let me know how you get on at the checkup

All the best

John

 

Rosemary Kemp said:



Hi John,

 

Nice to meet you. As I approach the second anniversary of being on cpap, the way I have been told to see if I need another sleep study is to stop cpap for about a week and see how I go! I tried this it at one point and slept so badly that I can't possibly take that route. So we'll see what they have to say to me when I go for the annual check up! I know that I am having far fewer apnoeas but whether the pressure on the machine should change or whatever, seems to be difficult to determine! Good old hospitals!

Bye for now,

Rosemary Kemp  

 

If you add each other as friend on here you can email to your hearts content :)

Rosemary Kemp said:

Hi John,

 

I'll ask Kath for your email address. I don't know the forum's rules but suspect that you are right! I think it would be great to know more about my apnoeas than my machine tells me. They have disabled most of its functions to keep me in the dark!

 

Rosemary  

John Hedley said:

Hi Rosemary

Thanks.  I'm happy to help.   However I think I might be breaking forum rules if I put company names here.  I am not sure whether you can email me via the forum, but if not please ask Kath for my email address and I will give you as much info and help as I can.

Regards  John

PS Don't worry about any typos - I'm the same!

 

Rosemary Kemp said:

I'll have to look into this oximeter device. I hadn't heard of one before yours. Can you give me the full description and where you got it from? Rosemary

P.S. I just re-read my last message to you and saw the typos! I wish this thing has a spell checker!

Poeple!! Hopsital!!! Wonderful!
John Hedley said:

Hi Rosemary

Thanks.   I think you will find that modern pulse oximeters are very accurate and have been proved to be so in various tests.   Your hospital, like mine, appears to believe that the patients should know nothing and simply press on in happy ignorance without accurate monitoring by the hospital, which then does not happen.  

I have no regrets in buying and using my oximeter - it has shown me that the hospital's setting is simply way too low for me, and I feel far better already!

Very best wishes.   John

.


Rosemary Kemp said:

Thanks for your reply John.

 

It is amazing isn't it? The reason that my hospital want to believe that I am "getting better" is that as I have lost so much weight, my apnoeas have receded. It was Kath who made me aware of how many fewer apnoeas I was having last year but the hospital are loath to carry out further sleep studies that they can avoid. So I am expected to prove the need for a further study!

 

They don't encourage us to do home sleep studies either. They have reasons for this too! Apparently these aren't reliable and only the hopsital do them "properly". Lots of poeple "know best" eh?

 

Rosemary

John Hedley said:

Hi Rosemary

 

Great to hear from you.    I never cease to be amzed by the stories I hear about hospital sleep clinics.   Mine is just the same!   

I have recently invested in a pulse oximeter (CMS 50F) because I was fed up with not knowing whether my CPAP was set to the correct pressure.   I have only had the unit  for a week but have found it invaluable in actually telling me what is going on overnight.  I was using 10cm (set by the hospital - "we set them all at 10cm") but I found that the report figures were way out and my SpO2 levels were way too low.  I am currently using 13 cm and the improvement in SpO2 figures is amazing.

I simply don't understand your hospital telling you that - Fine if they want to repeat the overnight study but why on earth inflict your body with OSA effects for a week to "see how you go" - amazing!

I am still a complete amateur on reading the report results at the moment, although I am trying to find out more!

If you are interested in a pulse oximeter I am happy to give you more info - they seem to be very popular in the US, and we are only now catching up!

Do let me know how you get on at the checkup

All the best

John

 

Rosemary Kemp said:



Hi John,

 

Nice to meet you. As I approach the second anniversary of being on cpap, the way I have been told to see if I need another sleep study is to stop cpap for about a week and see how I go! I tried this it at one point and slept so badly that I can't possibly take that route. So we'll see what they have to say to me when I go for the annual check up! I know that I am having far fewer apnoeas but whether the pressure on the machine should change or whatever, seems to be difficult to determine! Good old hospitals!

Bye for now,

Rosemary Kemp  

 

I'll try to work out how to add someone as a friend on the forum when I'm not so tired! My mask beckons. (Yuk!) Rosemary

Ahem, not sure this is the right place for the introduction ... but here goes and please move if not...

 

My name is Jackie, or you can call me Jacks, I was diagnosed with severe obstructive SA  approx 12 months ago.

I use a C*AP machine - rather unsucessfully - some issues from my other disabilities and some from cold nose and leaks lol.

 

Last summer (I think it was) I was distraught and depressed at the same time over this cpap I found somethings on ebay that just might help me so I bit the bullet and ordered hose huggies and a stand

- it was the best decision ever - not only did the equipment help me, but  this introduced me to Kath Hope (love that surname because Hope is what she brings totally!

I had to fnish work because of ill heath, but gaining 3 ish hours of sleeping thanks to C*AP machine has made a huge difference to me but I am still waiting for the other 4 or 5 hours lol !

I have learned more about apnoea from Kath and her links than any other source I have tried to find and sadly, including the hospital where I was given a lot of conflicting advice at times.

 

okay, rambled enough ! Hello to anyone reading this and I am very happy to become a Hosehead.

Thank you Kath for a lovely place to put my feet up in.

xxx

 

 

 

 

 

 

Hi Jacks,

 

C*ap takes some getting used to. The hose lift is really clever isn't it? I'm sure that Kath has told you that the height of the machine in relation to the hose and your head is really important and leaks are a pain if these measurements aren't correct! The hospiatl certainly didn't warn me about this, nor the fact that you can get covered in a flood of cold water in the middle of the night or have water bubbling through the mask as well!  

 

I have bought just about every sort of mask and I ring the changes. When one starts to leak (which still happens to me after two years for goodness sake!) I try a different mask. The wiehgt loss has helped a lot for me (not everyone needs to olose weight like I did of course) but the downside to this is that as my face gets slimmer and changes shape, the mask leaks again!

 

The best thing for mask leaks I have found is loads of Kath's magic cream which needs to still be wet when you put the mask on and it sort of sticks to your face. Then if (when) I get up for the loo in the night, I definitely don't remove the mask (or it will leak again) and I just carefully disconnect the hose from it leaving the machine going. Then I re-attach and forget the ramping period. Well it works for me. You may already be doing this or something similar.

 

Talk to you again soon.

 

Rosemary  

Jackie said:

Ahem, not sure this is the right place for the introduction ... but here goes and please move if not...

 

My name is Jackie, or you can call me Jacks, I was diagnosed with severe obstructive SA  approx 12 months ago.

I use a C*AP machine - rather unsucessfully - some issues from my other disabilities and some from cold nose and leaks lol.

 

Last summer (I think it was) I was distraught and depressed at the same time over this cpap I found somethings on ebay that just might help me so I bit the bullet and ordered hose huggies and a stand

- it was the best decision ever - not only did the equipment help me, but  this introduced me to Kath Hope (love that surname because Hope is what she brings totally!

I had to fnish work because of ill heath, but gaining 3 ish hours of sleeping thanks to C*AP machine has made a huge difference to me but I am still waiting for the other 4 or 5 hours lol !

I have learned more about apnoea from Kath and her links than any other source I have tried to find and sadly, including the hospital where I was given a lot of conflicting advice at times.

 

okay, rambled enough ! Hello to anyone reading this and I am very happy to become a Hosehead.

Thank you Kath for a lovely place to put my feet up in.

xxx

 

 

 

 

 

 

Hi Rosemary, so pleased to meet you :)

 

Thank you for the information, very interesting and I am open to any suggestions, help, advice anything !!!! if you can follow what I am writing please do not hesitate to point out stuff to me (I do not always make sense lol) anyone please feel free to comment - please.

I did get face fulls and nose fulls of water at times, occasionally I still get water in the nose pillows, which is horrible. I think this is because my nose is so cold ... the hospital said turn down humidifier and heating up ... which leaves me sooo dry (my medication drys my mouth out as well) and I cannot stand heating in the bedroom as I get burning sweats. So not helpful lol !

concession shutting window on colder nights and when extremely cold we put the central heating on for a very short while to take chill out.

I did try my machine on different levels, the hospital told me it must be lower than my head that was all. I have tried the machine in a drawer beside the bed (left open) and even a portable step, but found the drawer wasn't low enough as the hose drooped down and I got gurgling and blocking with too much water. With the step I pulled/knocked the machine off a couple of times, so I have ended up with it on the floor which is not ideal but seems to be the only way I can avoid the hose drooping.

My bed is very high and I have a lever which I use to help me move in bed and in /out etc and I use this when I can to support me when turning machine on/off, but I cannot always manage it so hubby helps.

I was told not to leave the machine running when not using it as it can damage it ??? so always have turned it off.

but do try not to get out of bed except for emergency loo - my sight is limited and struggle more with mask on.

The nose pillows do not seem to adhere at all lately and I get up with a miss piggy nostrels look as well.

The mouth part seems not too bad unless I 'sag' a certain way. I have tried the cream but things just slip around and the nose pillows shoot out even more quickly.

It may be the pillows are too small, but I did not have this problem at first with them.

this is only my 2nd mask - the 1st full face skinned my nose raw and bleeding and even with liners I could not cope, so got the resmed liberty from the nhs.

I don't know how many apneoas etc etc I am having now, not been told and I don't know how to find out - does the machine show? I was stopping breathing for upto 47 seconds a minute and having over 69 apnoeas an hour which was shocking to me- felt so ill though it did explain a lot lol. Doing better I know for sure, but still not having more than 2-3 hrs sleep and it is broken.

I was not a good sleeper before, but I have several health issues that contribute to this.

All in all it is a struggle, the CPAP does help definitely, but I feel I should be getting more out of it.

I go back to the hospital next tuesday the 22nd (Aintree hosp) so if anyone can offer me any advice on getting more help or which way to go with it I would really appreciate it.

hugs Jacks x

 

Have a look at this Respironics Fit Life mask Jackie http://bit.ly/eIwA4L I got it before I went into hospital ready for my nose operation, as I didn't want anything touching my poor painful nose!  I'm totally sold out on it, and I know it looks a real beast of a mask, but I like the fact that the seal is around the edge of your face so no mask marks.  Also, vision is so much clearer as there's nothing getting in the way of your eyes.  I'm thinking it would probably keep your nose warm too :)

There's 20% off until Friday, but you need to go to this link first for the discount code http://www.facebook.com/philipsrespironicsuk

Hi Jackie

 

Rainout is a real hassle and annoyance.  It is caused by the heated moist air cooling as it passes through the hose, and condensing back to water, hence the advice re room temperature and humidifier settings.

 

I had the same problem but solved it with a hose huggie,   The hose lift is also a great help because it forces most of the condensed water back to the humidifier rather than down to you or pillow or both!    You can get both from Kath.   They are a great help and should solve your rainout problem.

 

All the best.  John

 

Hi John, a pleasure to meet :)

I have got hose huggies which certainly did help, a big difference for me. I think the problem is the cold nose with regards to moisture in the pillows now - and I do mean cold.

if I were a doggie I would be remarkably healthy :)

The stand, the huggies and the cream (stopped the nappy rash on my chin lol)  all have helped in a big way and the biggest way was in being more accepting and positive feeling of having to use the cpap.

What does puzzle me though is the machine and humidifier that the hospital loaned me for the weeks trial (even though it was still cold weather) did not give me the same problems with cold and wet, though I only got one nights really good sealing with the full face mask then.

hugs Jacks x

Thanks Kath, that looks promising - I wonder if the hospital have this one

 I will have to wait a bit if I have to buy one, but the thought of spending so much and then it not working does bother me. (why can't we have a 2nd hand mask club? New cushions and thorough cleaning would be fine! I bet there are people out there who have tried a mask once and put it away in a drawer)

April and May are expensive months for us car, house insurances etc so it will have to hold on. Not working now means more budgeting than ever and ebay is pitiful at the moment.

I will ask the hospital what they do (doubt it will be much choice but the doc did say they get new masks in all the time).

The nhs could be so much better except that they waste so much money on outrageous things like overpaid useless management and viagra for 80 year old men and everyday things.  I  do get so angry with them withholding 'expensive' treatments for cancer, alzeheimers (cannot spell sorry) and other life threatening and debilitiating illnesses.

sorry for the rant ...

Our locals hospitals doe not even offer cpap and sleep labs so I have to go to Liverpool Aintree (though I do agree it saves money having one department) our local authority does not have an agreement with them so everything for someone out of area goes through application process which delays things as well.

oh dear me rambling again :(

sorry.

 

hugs Jackie xx

 

 

 

 

 

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