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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It's brilliant to have some more support. My hospital just provides specific equipment and then leaves it to you to survive with no meetings. They do invite you to phone them if you are "in trouble" but ongoing questions are not easily dealt with and it is very offputting to go through a ward and not a friendly "face". THis is not new for me now after approaching two years but I still have difficulties and it is great to talk and share. Mutual help! This site looks really great. Thanks Kath and Mike. I look forward to talking to fellow sufferers and maybe offer help and be helped in return.

 

All good wishes for your success in this new venture! Rosemary Kemp (my real name - I don't need to hide. Not now anyway! ) 

morning fellow hoseheads.

just thought i would pop in to say hello as just found this forum.

 

Hope to chat to you all real soon

 

 

Hi Andy,

 

We're the first two on this forum! Here's hoping it will really help us to be able to share hose hassles etc! Hope you had a good night of sleep! Rosemary

Fello Hoseheads, made me chuckle lol. 

Andy Thomas said:

morning fellow hoseheads.

just thought i would pop in to say hello as just found this forum.

 

Hope to chat to you all real soon

 

 

LOL too!!!

Niel Fordon said:
Fello Hoseheads, made me chuckle lol. 

Andy Thomas said:

morning fellow hoseheads.

just thought i would pop in to say hello as just found this forum.

 

Hope to chat to you all real soon

 

 

Hi Kath, Mike and everyone

Great to find this new forum.   I'm sure it will be a help to all of us to share ideas, suggestions, queries and problems.  After all, it is difficult to get informed advice from hospitals, so this will be a great source of expert help and assistance for us all.

All the best

 

 



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

 

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,

i cannot understand the thinking that you would need to stop your treatment to see if you still need cpap, that in itself is ridiculous.

If you have been diagnosed properly the likely hood is that u will need to carry on the therapy on the long term.

Cpap therapy is not a cure it helps u to control the episodes in a safe and controlled manner.

The hospital should be doing a download from your machine when u go to clinic and they can then determine from the results if your machine needs adjusting or if there are any tweaks to be made.

I would not stop your therapy at all and ask the hospital to run a diagnostic on your machine to see if anything needs changing.

 

hope it all goes well for u

Andy

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  

 

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 Andy,

 

Thanks for replying to me. I'm not good at replying "in the correct place" so forgive me if I am doing this all wrong!

 

My hospital know that I am having fewer apnoeas since losing significant weight (as they put it) after I had reading on an apap machine. Their reaction was to get me to "self diagnose" and ask for a further sleep study if I felt I could manage without the machine.

I know for sure that I can't manage without it! It was a nice idea but very much pie in the sky.

They don't offer a lot of support and don't seem to have great understanding and certainly don't encourage us to find out things for ourselves. We are simply expected to do as we are told and ask no questions!

Many of this just aren't going to accept this! We go looking for answers don't we?

Bye for now, Rosemary    

Andy Thomas said:

hi rosemary,

i cannot understand the thinking that you would need to stop your treatment to see if you still need cpap, that in itself is ridiculous.

If you have been diagnosed properly the likely hood is that u will need to carry on the therapy on the long term.

Cpap therapy is not a cure it helps u to control the episodes in a safe and controlled manner.

The hospital should be doing a download from your machine when u go to clinic and they can then determine from the results if your machine needs adjusting or if there are any tweaks to be made.

I would not stop your therapy at all and ask the hospital to run a diagnostic on your machine to see if anything needs changing.

 

hope it all goes well for u

Andy

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 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  

 

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Ben updated their profile
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Do tongue exercises work ?

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John posted a discussion

Getting a precise diagnosis - scans ?

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John is now a member of Hope2SleepGuide
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Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
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Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
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