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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 Kath Hope on
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Welcome Michelle and it's only when we get diagnosed that we realise we've had this problem for many years, and how much it's affected our lives. It's great that you can already see an improvement in your Mum, and this will continue as her body starts to heal and restore from all the damage and sleep deprivation. Hopefully, she'll soon feel she's had years knocked off her life
Michele Naisbitt said:Hello Kath and Mike. I have joined this forum as my 76 year old mother has recently been diagnosed with OSA. I suspect she has had this condition for any years - we often teased her about her loud snoring but she would always deny it! She is one week into using her CPAP and I can already see an improvement in her. I'm sure I will be back here soon for more advice
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Permalink Reply by Justin Stephens on
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hi everyone,my names Justin and i am an alco, sorry wrong place, sleep apnea. Diagnosed july 2016, just got machine the other week. Obviously havent encountered the pitfals of cpap usage yet, but its good to know that theres a place for chat and advise from the people in the field so to speak.
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Welcome Justin and good to know you've not experienced any of the hiccups with CPAP, and hope you're starting to feel the benefits.
Justin Stephens said:hi everyone,my names Justin and i am an alco, sorry wrong place, sleep apnea. Diagnosed july 2016, just got machine the other week. Obviously havent encountered the pitfals of cpap usage yet, but its good to know that theres a place for chat and advise from the people in the field so to speak.
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Permalink Reply by Helen McIntyre on
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Hi, I'm a newbie - further to a home sleep test I've received a letter from the hospital stating i am on the waiting list for CPAP equipment.
- Does this mean i have definitely been diagnosed with sleep apnoea as the letter wasn't clear? I was expecting maybe another meeting with the consultant to discuss the results
- The waiting list is approx 8-12 weeks according to the letter, would this relate to severity or not of the condition or is it more likely to just be the standard waiting time for my area? (Northants)
- I am due to travel to the US in April with some colleagues and we are supposed to share rooms. Worried about either not having the equipment and keeping them awake snoring all night or having the CPAP equipment and it bothering them. Plusou the flight back is an overnight flight and i know i will fall asleep on the plane! Any advice?
Thank you
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hi Helen, and welcome. This does mean you have sleep apnea events in the night and they are greater than 5 an hour. If like me, you wont see a doctor to explain everything, but a sleep specialist nurse, and if like mine, was very good at her job. What I will say is that they are very underfunded in their endevors and waiting times are some times very long. It may take some time to get used to cpap and finding the right pressures for your machine to work effectively so dont loose heart in it and read as much about your condition as you can. There is ALOT of info out there and remember its YOUR condition to look after.
Helen McIntyre said:Hi, I'm a newbie - further to a home sleep test I've received a letter from the hospital stating i am on the waiting list for CPAP equipment.
- Does this mean i have definitely been diagnosed with sleep apnoea as the letter wasn't clear? I was expecting maybe another meeting with the consultant to discuss the results
- The waiting list is approx 8-12 weeks according to the letter, would this relate to severity or not of the condition or is it more likely to just be the standard waiting time for my area? (Northants)
- I am due to travel to the US in April with some colleagues and we are supposed to share rooms. Worried about either not having the equipment and keeping them awake snoring all night or having the CPAP equipment and it bothering them. Plusou the flight back is an overnight flight and i know i will fall asleep on the plane! Any advice?
Thank you
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Hi
Most machines are pretty quiet, and it's a fairly rhythmic noise. Hearing my partner snoring loudly, and then going silent, before spluttering back in to life, was far more disturbing. But if you have concerns, your company should understand this is a medical issue, and book a separate room.
In theory some airlines allow you to plug your CPAP machine in to their in-seat power sockets, so long as it will work at 110 volts, and you have a USA plug adaptor. But don't rely on this, as Singapore Airlines changed their mind, when I was at the check-in desk! Battery packs are available for some machines, but are stupidly expensive. I guess if you are used to not having a machine, and if you're sitting in a seat rather than lying down, it might not be too bad.
I think most machines are suitable for 110 or 240V but you need to check. You should also carry a letter from your hospital to state the machine is necessary. The airlines I have travelled with are always happy to let me take my machine in addition to my hand luggage. If your machine has the usual 2-pin "figure of eight" connector on it, you can buy a replacement cable e.g. one of these which saves messing with travel adapters. And I would recommend anyone travelling even in the UK to get a simple extension lead like one of these because not every hotel has a power socket by the bed (North America seems better at doing this).
Helen McIntyre said:- I am due to travel to the US in April with some colleagues and we are supposed to share rooms. Worried about either not having the equipment and keeping them awake snoring all night or having the CPAP equipment and it bothering them. Plusou the flight back is an overnight flight and i know i will fall asleep on the plane! Any advice?
Thank you
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Thank you very much Justin and Jonathan, i really appreciate your advice. Now i just need to wait to get the CPAP machine and see how i get on with it. Reassuring to know thought that travel should be manageable and thank you for the links
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Permalink Reply by Chris Mabbott on
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Hi Eveyone
I’m new to the site and to the CPAP machine, I have been suffering with Sleep Apnoea for years and been going to the doctors with constant tiredness. Unfortunately they only ever treated me for the symptoms and never the cause. A friend of mine told me while we were sharing a room on holiday that I stopped breathing in my sleep so I googled it. That’s when I went back to my doctor last September and demanded a referral to hospital, I had my overnight sleep study in October and got my results on the 16th of February this year when I was given my CPAP machine. It turns out I have it quite severe and wake 60 times an hour…that might explain why I have been so tired for years.
I really can’t get on with the mask and so far 4 hours is the longest I have gone but I was wide awake the whole time. Do you ever get used to the claustrophobic feeling? I have been back to the hospital to ask for a different style of mask and I am waiting for that now, I also asked about lowering the pressure as I was struggling to breath. They won’t do that without the consultants consent.
I think I feel more tired than I ever have since picking up the CPAP, I think it maybe the fact that I actually know I have a problem now.
Living in hope that this will eventually work
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Hi Chris I am also new to the joys of CPAP having been diagnosed late last year in Germany and have only been using the CPAP since December.
Is that the photo of your mask? If so I presume you had to have a full face mask? I can imagine that must feel very claustrophobic. Could you not use a nasal one? I have done a lot of reading up about masks as I wasn't totally happy with the one I was given which was a Fisher and Paykel Zest Q, and have recently purchased a Philips Resprionics Wisp Nasal Mask. It comes with 3 different size nasal cushions, so you can chose the one that is most comfortable, I started with the small size but now find the med/large is much better.
I too felt I couldn't cope with the whole CPAP thing at first, but I decided I had to just give in and accept the way it felt and keep thinking to myself it was helping me.
It helps to go to bed really tired and do everything you can to make yourself comfortable. I usually turn it on and sit on the side of the bed for a while to get used to it and then lie down. With this new mask I can wear my glasses so I lie in bed and read until I feel my eyes closing. The difference it has made to my everyday life is amazing - I can stay awake all day now and don't feel drugged and half dead all the time. It is definitely worth persevering, just lie back and think of England!!
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Permalink Reply by Bill Thomson on
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Welcome to both. You are in the right place, plenty of support and advice both here and in the Facebook group. I can't really help much because it is so long since starting my OSA journey and I have never really been troubled by the classic symptoms. But somebody will be able to answer - Kath is very knowledgeable and helpful.
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Permalink Reply by Ted on
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Hi Chris pleased to see you hear I'm also new to this and in my case a mask change helped me no end couldn't get on with the ones hospital gave me and they did try bless them so I bought one of Hop2Sleep site I'm not suggesting you do this but stick with it all will all come eventually.
Remember this your in charge not the mask and there is nothing stopping you from wearing it in the day time with or without the machine I've cooked in mine done the house work watched tv as Tesco likes to say every little helps
Steve
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Thanks for the words of encouragement, I will stick with it and keep trying different masks until I find one that's good for me because I'm on my knees right now with it.
I think the auto pilot I've been working on for years has just about given up.
Thanks again, I'll keep you posted unless I have a really good sleep and I might just have a lie in.
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