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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
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Replies to This Discussion
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Permalink Reply by Douglas Vincent-Smith on
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Kath Hope said:Great to have you Douglas, and yes we're all in this together. Have you been on CPAP long?
Hi Kathy hope your well ... I've been on CPAP for six years now
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Permalink Reply by Kath Hope on
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Good to hear Douglas and are you feeling much better since you went on therapy?
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Kath Hope said:Great to have you Douglas, and yes we're all in this together. Have you been on CPAP long?
I've been using CPAP for over six years now Kathy
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Yes I know - I meant do you feel better since before you got treated back then? - if you can remember those days lol. I remember them very well + they're not all happy memories
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Permalink Reply by David Anthony Burnley on
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Now that I have arrived will start looking at the posts, I am sure that some of my questions have already been asked aa hundred or more times. I was diagnosed with moderate sleep apnoea in July 2013 and was issued with a CPAP (don't remember its make). This I found difficult and when I went back was given the Resmed S9 which I still have. I was told at the time that I was a CO2 Retainer and the Resmed was more appropriate
It took a few months to learn to get on with this foreign object but I persisted and have learnt to live with it. I feel better for using it particularly now that I have upgraded.
I also have a number of other conditions, mild heart failure after a triple by pass, Type 2 Diabetic (insulin dependent), Pulmonary Fibrosis (yet to be confirmed), Hypothyroid and Reactive Arthritis.
Looking forward to being in touch with my new fellow members.
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Glad we got you in finally David
There's a search bar at the top right of every page so if you're looking for anything that you think might have been discussed before, old posts will show up with keywords. Feel free to start up any new discussions though David and we never mind the same questions being asked - we're very patient 
Glad you got diagnosed, as the diabetes, hypothyroidism and heart problems are all probably due to the untreated sleep apnoea so hopefully you'll now be protected from further damage to your health.
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Permalink Reply by Glassdaisy on
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Hi,
I was diagnosed with SOA back in March after being refused a general anaesthetic to have some root canal removal (no tooth) and a broken peg removed from upper jaw. I was lucky in that East Grinstead Queen Victoria Hospital who are hopefully going to be doing the dental work also run a Sleep Clinic, so my referral was inhouse. I have had my cpap equipment for 2 months and have used it for at least 7 hours every night. I have resorted to cotton liners, because i got an open sore on the bridge of my nose within 3 days. I have had a few nights where I have taken everything off again because of difficulty in breathing. My nose gets b***ed up within 15 minutes or so of putting on my nasal mask, but during the day it is constantly running....weird huh? The clinic wanted me to have a full face mask, but I had it on less than 5 minutes when I started panicking, and as I have problems with panic attacks when not in control, I was fitted with a nasal mask. I feel that now that I feel in control I would like to get the full facial see all round one. I like reading in bed, I often have to get up once during the night and it would be nice to see where I am going (I have neuropathy in both feet and they tend to do their own thing, not necessarily what I think they are doing). I am seeing the Sleep Technician tomorrow, but I suspect if they gave me a full mask, it will be another similar in structure to my flexifit 406. They seem such a lot of money, when the only way to try is to buy and hope for the best. I have visions of a drawer full of unused masks lols. Any advice please? Reading some experiences, I feel I am not doing too badly, altho I hate needing the cpap and mask etc., I do not feel so tired, am not having apnoeas during the day, and funnily enough I am not having to visit the loo several times a night.
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Welcome Glassdaisy, and you certainly were lucky the hospital recognised undiagnosed sleep apnoea before undergoing an anaesthetic. Sounds like you've got over the initial panic with the masks too, which some people experience.
If you're managing to keep your mouth closed with the nasal mask I would be inclined to stick with nasal rather than full face, because nasal breathing is far healthier for us. Unfortunately, I'm not able to nasal breathe so am stuck with full face masks. I also went on the long chase in finding suitable masks for me many years ago, and as you pointed out, ended up with a cupboard full of unsuitable masks and a waste of a lot of money. There are some good nasal masks out there where you can put on your glasses like the Wisp which is also a good option for people who suffer from nasal bridge sores (along with nasal pillows style of masks). Take a look at the blog I wrote on choosing masks http://www.sleepapnoeablog.com/choosing-a-cpap-bipap-masks-for-slee... and ask your clinic what options they have for you to try. If you need to consider purchasing your own mask in the future from my Hope2Sleep website please ask for advice first if you are unsure, as we do all we can to stop people making costly mistakes.
Regarding your nasal stuffiness, do you have a CPAP Humidifier attached to your machine? If not, then ask your clinic as this can help tremendously. Also, try using the Breathe Right Nasal Strips you can buy from the supermarket or chemist, which help open up your nasal airways more. If the problem still persists then speak to your GP about having a nasal spray prescribed.
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Hi Kath,
Thanks for your welcome. I went for my assessment today and have come away with a larger mask, same design flexifit but the 407 instead of the 406. It doesn't feel as restrictive as the 406. So we will see how it goes. My air pressure has been increased from 10 to 12.5, and Eric has been shown how to alter it as necessary. They will keep in touch with monthly checks by mail or phone with a review in a year. They seem to be quite pleased with me. I have averaged 8.5 hours a night.
You are left very much on your own by the looks of it, altho they do respond if you have a query or a problem.
I do have a humidifier in my machine, set at 2 because I found it uncomfortable above that. I must count myself as lucky, because having suffered full blown panic attacks at dentists, and after surgery, I have been able to teach myself to control it in relation to the OSA. It is most definitely a love/hate relationship with that mask/machine lols.
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Good luck with the new pressure and Flexifit 407 Glassdaisy, as well a overcoming your panic attacks which is no easy challenge. Onwards and upwards....
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Permalink Reply by Deborah Wainwright on
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Hello Glassdaisy, I am Debi from Fisher & Paykel, the comp
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Hi Debi,
Oh bliss, I woke up this morning and my face was so grateful lols. I slept right through, and it felt as good as when I put it on. I can remember coming round a few times due to the pain in my leg, but just went straight off again after I had moved it. Mask did not move, and my nose felt so much better. Long may it continue. Debi, one quick question....how do you stop the elbow from squeaking please? The 406 developed an annoying squeak about 2 weeks into use. Apart from that, it was just too small to be comfortable for me, but that apparently was the right size. The 407 allows a bit more room for my nose to be comfortable.
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