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5 months down the line
It is now 5 months 1 day since i got my cpap machine, and for me thats been 5 months and 1 day without a full nights sleep.
Things seem to be getting worse instead of better, i still have leaks. I know the mask is too tight, because i have a very sore and stiff neck with it, but if i slacken if off it leaks, so i can't win.
I can usually manage about 2 hours, then its just a battle for next few hours till i get up. I even resorted to going to bed one night without it, but sleep was no better, must be something in my mind telling me not to sleep!
I am just about at the end of my tether, and know i'm getting depressed, i just dont know what else to try
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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Am so sorry to read this Linda, and it's not surprising you're feeling depressed. You can't be left like this, and the person with the most empathy for you just now would be Gina who was exactly like you until she got sorted with a new sleep specialist and machine. I'm not suggesting this is your problem by any means, but I'm just pointing out that there will be an answer for you. What are your sleep clinic doing about this? Mr Oko, where Gina now goes has a pet saying he repeats to people who are struggling with masks, which is "It can take a lot of frogs to kiss before you find your prince....." This was certainly true for me too! If you're having to tighten the mask until it hurts your neck, things are not right :(
See if you can get an urgent appointment with your sleep clinic to see what else they can offer you.
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Permalink Reply by gina on
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Hi linda
I am so sorry to here that you are struggling and things are just getting worse and worse for you. Get back to see you specialist and see what he says - i was just like you and i kept trying and trying but all the time i was getting worse. I struggled with day to day things and became so depressed i could not sleep for longer than 2 hours. I kept going back to get help + in the end i changed my specialist to one that was a specialist in sleep apnea instead of a respiratory one. I ended up traveling 3 hours to a sleep clinic ran by Mr Oko who is also an ear nose and throat specialist, which is also brill cos he can look to see if there is any other way to help us !!! In the end he gave me an APAP machine + the new machine is so quiet and a new blue gel mask. I aren't saying will work for you because you may have to keep trying !!! But don't keep trying with one thing for too long. Keep going back to sleep clinic even if it is weekly or more ! Having sleep apnea is bad but trying to get used to machine and having even less sleep is so hard. I used to have such a painful neck - maybe due to stress as well as the mask. I now take 2 paracetamols a night just in case but the mask i have now does not go in to the base of my neck the mask is a Respronics ComfortGel Blue mask . All i can say is stay on Hope2Sleep's site, get back to see specialist and if not happy, get a new specialist. I was like you - fed up of trying and getting nowhere but since seeing a new specialist i now sleep approx 8 hours a night. I have only had this machine 15 days and for 15 days i have slept !!! Just dont give in but don't fight it without help cos having help just gives you some support, and we are here any time. Keep in touch! I understand and so do a lot of people on here xxx Hope this gives you some hope x
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Permalink Reply by Terry Vella on
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Linda, I agree with Kath and Gina, with the leaks, have you tried mask liners and having the hose come from above your head, if not, give that a try first. After the two hours, turn the machine off, re adjust evrything and start again, it's not the greatest but if you can get sleep in 2 hour blocks it's better than nothing at the start. You will eventually get used to it. Getting rid of the leaks is the biggest issue, keep at it and keep us updated.
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Permalink Reply by LINDA on
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hi, thank you all. i phoned clinic today, and they will phone me tomorrow and try and see me soonest. I have bought liners, strap covers etc. i went as far as buying mask liners from america, for specific masks, they do help, but slightest movement and the mask leaks, so very conscious of trying to keep very still all the time. I wouldn't be without my hoselift either. I really have tried everything i can think of, so hoping clinic can come up with something. Will keep you posted, and thanks again for your support.
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The gel mask ive got is brill but not all masks are for every one. The gel one if and when i get a leak i just press on the area and the gel seems to move and stop the leaks. Respironics ComfortGel Blue mask is the name + worth a try. If you do manage to try it, with the head straps you can fold the bottom neck strap up that takes it away from the base of you neck . Fingers crossed for you . Make sure to push for your appointment as it is your body not theirs and you need sorting as soon as possible x
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The ComfortGel Blue is on the website for you to have a look at Linda CLICK HERE and it's a very popular mask and was updated recently to the 'Blue Gel' due to popular demand, so I hope your clinic do stock them. Another type of mask to try is the Innomed Hybrid (supplied by Devilbiss in the UK) or the Resmed Mirage Liberty - these are both nasal pillows type of masks with the extra mouth-piece for mouth breathers, seeing as you need a full face version. They are similar to the Respironics GoLife but that one's for nasal breathers, and mouth breathers would need a chin strap as well.
Another thing to bear in mind is how long you have the CPAP on it's ramp at the lower pressure. You say the higher pressure wakes you up, and from what I remember I don't think you're on APAP, so the higher pressure I'm assuming is after the machine's finished the ramp stage. Firstly, do you need the ramp, as you can ask them to turn it off? When I use my machine on CPAP I never use the ramp, but I did like it in the early days whilst I was getting used to the pressure. If you do like the ramp, then you need to make sure your mask is set up properly for the higher pressure after the ramp or it could seem fine at first, but when the pressure is higher then leaks can happen. This can also be a problem for people who are on APAP, which is why I advise people set their mask up for when their machines will blow at the highest pressure.
Hope you get an appointment quickly and good luck with it. It might also be worth showing them all the extras you've bought to try to help yourself, so they realise you are trying your best!
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