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Sleep Apnoea Forum Bringing Help + Support to the Patient
Study Trials for New Non-Invasive Electrical Stimulation Therapy
LATEST UPDATE (24/7/15)
ONLY 3 remaining places left for people wanting to be part of the study for the proposed alternative Non-Invasive Electrical Stimulation Therapy for Sleep Apnoea (see below).
LATEST UPDATE (26/6/15)
Final Call for the 6 remaining places left for people wanting to be part of the study for the proposed alternative Non-Invasive Electrical Stimulation Therapy for Sleep Apnoea. They are particularly looking for patients with diagnosed Obstructive Sleep Apnoea who struggle with CPAP. Whilst it would be more convenient for those living in the London area, anyone is welcome who are willing to travel and stay in the Guy's & St Thomas' Sleep Disorder Unit for 3 separate nights. Also bear in mind that patients on CPAP/MAD must discontinue the treatment during the trial (approx 3 weeks or so).
People interested should email one of the following:-
Dr Martino Pengo - martino.pengo@gstt.nhs.uk
Kate Reed - kate.reed@kcl.ac.uk
Dr Joerg Steier - Joerg.Steier@gstt.nhs.uk
IMPORTANT UPDATE (28/1/15)
I've been contacted by Guy's & St Thomas' NHS Hospital to a special thank you to all of you who filled in the survey which helped them collect evidence proving the alternative treatment to CPAP is in high demand. Due to the fact they are about to finish the recruitment for the new Non-Invasive Electrical Stimulation Treatment, as an alternative to CPAP for suitable Obstructive Sleep Apnoea sufferers, they are looking for the last 15 patients for the trial. In particular they are now focussing more on patients with Moderate-Severe Obstructive with a BMI<40 - possibly living close to London or in South of England.
If interested email martino.pengo@gstt.nhs.uk OR joerg.steier@gstt.nhs.uk
Will everyone please fill in this short survey, as requested by Guy's & St Thomas', regarding the new Non-Invasive Electrical Stimulation Therapy as an alternative to CPAP for people who need this? CLICK HERE FOR NEW SURVEY
You may remember the original post about this with a link to full information published in CHEST, to help them get the funding needed for the trial http://hope2sleepguide.co.uk/forum/topics/new-treatment-for-sleep-a...
The trials are now currently underway with promising results, and filling in the survey will help this become another option for people. It is an anonymous short survey and can be filled in by people worldwide.
Thank you!
Views: 1393
Replies to This Discussion
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Permalink Reply by martin robertson on
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Found the link in facebook - I think.
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Wow! Exciting. I have surveyed. I'd rather have implants so I could just forget about it all. I wonder if you have tried this Kath? It looks similar to TENs. I have a TENs machine. I'm very interested!
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Permalink Reply by Kath Hope on
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Thanks for rescuing me Martin
Unfortunately I had a dizzy blonde moment and totally forgot to put in the current link to the survey, then had to go offline for a few hours.Unfortunately, I'm not a candidate for this new treatment or I'd have been first in line to try it. My sleep apnoea's too severe
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Hi Kath, I've done the survey. I would LOVE to have an alternative to cpap. I have been using cpap for just over three years now and I'm 100% compliant, but I still keep getting spots on my chees where the mask touches, even though I use my cpap cream every night and morning. The spots are improving now but were very sore last week.
However, I just fall into the severe category too (32) so I guess the new treatment may not be an option for me either?
Hopefully, one day there may be an alternative for all of us!
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Permalink Reply by John Daniels on
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Hi Paula
Re your spots on your cheeks, I use a "Pad a Cheek" over my mask because I too was having skin trouble. You can find them on the net, they are in USA and they are very helpful..
Regards
John
WestAustralia
paula fry said:Hi Kath, I've done the survey. I would LOVE to have an alternative to cpap. I have been using cpap for just over three years now and I'm 100% compliant, but I still keep getting spots on my chees where the mask touches, even though I use my cpap cream every night and morning. The spots are improving now but were very sore last week.
However, I just fall into the severe category too (32) so I guess the new treatment may not be an option for me either?
Hopefully, one day there may be an alternative for all of us!
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I've done the survey. I've had a CPAP for a couple of months and I had no idea that there were any alternatives!
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CPAP still remains the 'gold standard' therapy Sharon and is supplied from the NHS. Sometimes dental appliances can treat people in milder cases, but if people do try these they need to ensure they undergo a sleep study whilst wearing it to check it is treating their apnoeas/hypopoeas, as diminished snoring does not always mean no sleep apnoea! As for this new treatment, it's not available yet and is halfway through the trials. If it proves successful then this could well be a suitable alternative for some people.
Sharon Davies said:I've done the survey. I've had a CPAP for a couple of months and I had no idea that there were any alternatives!
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No, at this stage Paul, during the trials at least, it is not for us with severe sleep apnoea. However, there's always 'hope' for the future......If the spots on your face are caused by the straps, then there are 2 ranges of strap covers we do (the light version would help for spots or the double thickness for indentations from the straps) http://www.hope2sleep.co.uk/products/5
If the problem is from the mask seal then you can make your own liners from an old t-shirt. See this discussion http://hope2sleepguide.co.uk/forum/topics/masks-and-air-leaks
paula fry said:Hi Kath, I've done the survey. I would LOVE to have an alternative to cpap. I have been using cpap for just over three years now and I'm 100% compliant, but I still keep getting spots on my chees where the mask touches, even though I use my cpap cream every night and morning. The spots are improving now but were very sore last week.
However, I just fall into the severe category too (32) so I guess the new treatment may not be an option for me either?
Hopefully, one day there may be an alternative for all of us!
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Hi John, thanks for your input. I tried making my own liners, without success and then tried a gel liner, (also from the USA) which was only partially successful. I checked out the site you recommended and think the 'Pad a Cheek' might well be worth a try. Thanks again.
Paula.
John Daniels said:Hi Paula
Re your spots on your cheeks, I use a "Pad a Cheek" over my mask because I too was having skin trouble. You can find them on the net, they are in USA and they are very helpful..
Regards
John
WestAustralia
paula fry said:Hi Kath, I've done the survey. I would LOVE to have an alternative to cpap. I have been using cpap for just over three years now and I'm 100% compliant, but I still keep getting spots on my chees where the mask touches, even though I use my cpap cream every night and morning. The spots are improving now but were very sore last week.
However, I just fall into the severe category too (32) so I guess the new treatment may not be an option for me either?
Hopefully, one day there may be an alternative for all of us!
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paula fry said:Hi John, thanks for your input. I tried making my own liners, without success and then tried a gel liner, (also from the USA) which was only partially successful. I checked out the site you recommended and think the 'Pad a Cheek' might well be worth a try. Thanks again.
Paula.
John Daniels said:Hi Paula
Re your spots on your cheeks, I use a "Pad a Cheek" over my mask because I too was having skin trouble. You can find them on the net, they are in USA and they are very helpful..
Regards
John
WestAustralia
paula fry said:Hi Kath, I've done the survey. I would LOVE to have an alternative to cpap. I have been using cpap for just over three years now and I'm 100% compliant, but I still keep getting spots on my chees where the mask touches, even though I use my cpap cream every night and morning. The spots are improving now but were very sore last week.
However, I just fall into the severe category too (32) so I guess the new treatment may not be an option for me either?
Hopefully, one day there may be an alternative for all of us!
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hi Kath, I do have both sets of strap covers, (which do a great job) the spots are caused by the mask seal. I did try making my own liners a while ago, but found using the mask as the template, difficult... anyway, it wasn't successful. Last year, I purchased a silicone mask from the USA, which was partially successful. It was very sticky for the first couple of months, which made it a real 'faff' to use, then it settled down for a while, after which it didn't 'stick' at all. It should have lasted 6 - 12 months, I got just about 6 months use from it. It cost $39.50 plus P&P and I didn't re-order. I may well try the 'Pad a Cheek' liner as recommended by John, in Australia. Amazing how helpful and far reaching your forum is, Kath.
Paula
Kath Hope said:
No, at this stage Paul, during the trials at least, it is not for us with severe sleep apnoea. However, there's always 'hope' for the future......If the spots on your face are caused by the straps, then there are 2 ranges of strap covers we do (the light version would help for spots or the double thickness for indentations from the straps) http://www.hope2sleep.co.uk/products/5
paula fry said:Hi Kath, I've done the survey. I would LOVE to have an alternative to cpap. I have been using cpap for just over three years now and I'm 100% compliant, but I still keep getting spots on my chees where the mask touches, even though I use my cpap cream every night and morning. The spots are improving now but were very sore last week.
However, I just fall into the severe category too (32) so I guess the new treatment may not be an option for me either?
Hopefully, one day there may be an alternative for all of us!
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Yes, it's worth trying all things to fix our problems Paula. I do remember you telling me about trying the sticky gel mask seals too. When I posted about the strap covers I did think you already had them, so now you've said the problem from is from the mask cushion that makes sense. Look what I found today on Ebay, and might be worth a try http://www.ebay.co.uk/itm/171324676090 The shipping is a bit expensive to the UK but they guarantee no import charges. Let me know if you try one.
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