"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
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 Robert Winchurch on
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Well Done Steve
What a great success story to go from 51 'apps' to zero is pretty fantastic. What has happened about you and your driving license? Have you been in contact with the DVLA and are they happy to allow you to continue to drive despite you original high count? Some times they need you to have a recorder 6 months clear before agreeing to you having your license back.
Apart from that it must be fantastic to have your life back ,well done you and well done your sleep clinic. Keep wearing the mask remember just because you feel better the sleep apnoea does not go away you only control it never cure it unfortunately!
Robert Winchurch
mobilityproducts4u.org
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Permalink Reply by Roz B on
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welcome Steve, so pleased to hear you are doing so well.
I'm fairly new to all this too. I got my CPAP machine in January after an AHI of 63, i have been compliant and my AHI's have gone done significantly, but i'm just struggling finding a mask that I feel comfortable with. Luckily I have a very patient consultant.
I notified DVLA once I started using CPAP and I assume after they contacted my consultant they have given me permission to continue with my DL, although I hardly drive these days. They are interested as to wether you are complying and the therapy is working for you. you should be fine.
keep up the good work
hugs roz xx
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Hi Roz,
Your reaction from the DVLA is interesting my original count was 61 per hour and my license was revoked straight away. My count is now down to the mid twenties after getting on for two years of treatment and my sleep clinic will not recommend to the DVLA for me to be able to drive until my count is down under 5 for a period of 6 months or more!
Like you I have had problems with obtaining the correct mask and because of the pressure levels i require I have now gone back to a full face mask and whilst that is working probably on a 95% success rate I do still get problems! My sleep clinic is run by lady called Julia Roberts and so I have my own "pretty woman" looking after me and she is both pretty and also very helpful. when we last had major problems with my mask she got me to try 9 different types and sizes before coming back to the full face mask!
Now I am just singing Pretty woman in my sleep but don't tell anyone why please!
Roz B said:welcome Steve, so pleased to hear you are doing so well.
I'm fairly new to all this too. I got my CPAP machine in January after an AHI of 63, i have been compliant and my AHI's have gone done significantly, but i'm just struggling finding a mask that I feel comfortable with. Luckily I have a very patient consultant.
I notified DVLA once I started using CPAP and I assume after they contacted my consultant they have given me permission to continue with my DL, although I hardly drive these days. They are interested as to wether you are complying and the therapy is working for you. you should be fine.
keep up the good work
hugs roz xx
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bless you… I have similar in the male version :) But as my husband comes with to each appt i think all are 'safe' lol
re the DVLA, i think may be its because i happened to be one of those, although i have a high AHI I never felt very sleepy. I have fibromyalgia too and arthritis in my hip… in only 50 and had to have my first hip replaced when i was 41 and now the other needs doing, so with all the pain I am always feeling fatigued, but not actually sleepy. I think the DVLA look at the score of the Epworth scale as well as how well you are complying.
Do you still feel sleepy during the day, or has the CPAP been your miracle cure for that…. unfortunately i havent yet felt any benefits from the CPAP, but i have seen my AHI drop down to below 5, sadly though it has been increasing since changing to a full face mask… i go back to the sleep clinic on thursday and am going to see if they have a different nasal mask. I tried the optilife first and that has give me the best results…. unfortunately though made my nostrils sore.
Kath recommended the Fitlife, it is fairly comfortable and i thought i would hate it because of the size, but have coped ok…. my only bugbare with it is my apnoeas have gone up (highest was 14.6, but I cant stand the noise the leaks of air are making. Its waking me up all the time and i am struggling with velcro all night which in turn is killing my shoulders…. I would love to be fit as I feel i could cope with all this much easier. I struggled for weeks before i could even remove the pipe for cleaning, I had to reply on my OH to so all that, but now as it has been removed so many time to clean i am just about managing it myself.
Do you find yourself telling everyone all about CPAP and OSA??? I don't know if its just me, but if someone mentions snoring i tell them all about it… i guess i feel maybe it will save someones life :) Or….. this is just my way of accepting all this (I have many days when I'm not coping very well…. although I use the CPAP every night… i so wish I didnt have to!)
I do hope you manage to get your count down soon so that you can get your DL back. It might be worth you phoning DVLA Medical section and ask them what their criteria is, as it may just be your sleep clinic has made that 'rule'.
Technically the rules should be the same wherever we are. I'm not driving at the moment due to other meds i'm taking, but they have written to confirm re the OSA that I am ok to keep my licence. I have to notify them if there are any changes though.
good luck, hope it all works out for you
hugs roz xx
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Hi Roz
I am considerably older than you just had my 68th birthday but please don't tell anyone as I only admit to 27! like you i am falling apart, I have arthritis in both ankles and hips, had a right hip replaced in February of last year and am going in to Gobowen orthopaedic hospital on the 4th of april to have my first replacement left knee removed and a new one fittted, the first replacement was done 3.5 years ago and has been a real disaster . More painful and less movement than my original knee was and I thought that was bad! My sleep is disturbed by the pain from the knee and my ankles and also because my left hip is now starting to go! Like you I still struggle with masks and although the full face mask i am now using has improved my situation I still get leaks that make stupid noises and disturb both me and my wife! I cannot understand why some nights I get no leaks and other nights whatever I do I cant stop the thing leaking!
With regard to driving I am more than happy to manage without, my motto is 'Always look on the Bright Side of Life! and now I am the one who can drink when we go out for meals! The only problem will be if we go away and want to hire a car as Annie, my lovely wife, has never driven on the right side of the road, well only by accident, and does panic about the idea but we will cope with that when it happens.
I am grateful that I found Kath as she has been such a great help and inspiration and like her I run a web site it is www.mobilityproducts4u.org where I sell as many items as I can to aid people with disabilities including electric adjustable beds, wheelchairs, riser recliner chairs and walking aids and much more! Have a look when you get time, if you find the "about us" section you will find a recent picture of me in thee which will prove my claim to be 27!
Surprisingly I too speak to people about sleep apnoea and worry that i might become a bore about it but if we can save one person my telling them that snoring heavily is not something to laugh at and get them to check themselves out with their Doctor then I don't mind boring them!
The mask situation is frustrating but as I told Kath some time ago if the choice is mask or casket I will choose the mask every time!
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Arrrhhh Robert, I feel I want to give you a big hug :) I like your humour, it bought a smile to my face, which isnt often at the moment :)
I'm sorry that you are suffering so much with your joints too. i was born with hip problems, so it has been with me all my life, luckily I got the best treatment from the famous Great Ormond Street Children's Hospital until I was 15 then at 17 I went to Royal National Orthopaedic in London and have been going ever since.. i think they are stuck with me now, even though we live 130 miles away! ( we used to live only 45 but they allowed me to stick with them thankfully!)
I totally agree, Kath is a godsend…our little sleeping angel :) I'm so pleased I found the site.
I have a great service, if you want to call it that from my consultant and his words to me were….. it may take many frogs to kiss before I find my Prince…. and he will supply the Frogs! Its a great way to look at it and certainly made me feel at ease….even on my last appt just prior to going into the hospital some 'kind' person decided to reverse their car into ours whilst we were waiting to park, i went into sheer panic mode as we had the dog in the back where the other car went into us…so i wasnt in the best state when i got into the clinic…. but at least by the time i came out he made me feel calmer…. to be honest I dont think i could do any of this if it wasnt for him….. unless they have tons of patience, you can see how many people would just give up. I may be struggling and its effected me mentally, I will get out the other side :)
I'll pop over to your website in a moment…its always handy to know of good sites.
Have a good day and hope you arent in too much pain. I'll be thinking of you next month and i'm sure your new knee will be much better… much has changed in 3.5 yrs
take care
hugs roz xx
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thanks Roz for you wishes for next month. Like you i am so lucky in my hospital I am going to The Robert Jones and Agnes Hunt Hospital in Gobowen in Shropshire one of the best orthopaedic hospitals in the UK and my specialist there is a great man and with a sense of humour as well! We are so lucky to have the NHS but I fear our current government is doing its best to get it into private hands! That is another story though.
I am hoping that the knee op will lessen the pain but I just look at other people about and realise how lucky I am specially when I am in hospital. But i tell you what the other patients and staff will have to behave themselves otherwise I will go to sleep without my mask on and with my normal snoring no one else will get any sleep! Hopefully will only be in for 4 or 5 days but means that the Easter bunny will have to find me there!
I am sorry to hear that you have had hip problems all your life make me realise just how lucky I have been in not really having problems till my late 50's and early 60's but my loving parents gave me my own disability which i have had to carry all my life, trying to be posh they called me " Robert Charles" and never thought about the consequences and I have been called arsey wherever I have been ever since!
Speak again soon!
Regards
Robert
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Permalink Reply by stephen smith on
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Hi Robert.
I have just printed off the medical fitness to drive form. Not quite sure what to do tho. As my DL is still in my old address (ooops) so should I inform them of medical first or change address first. I am trying to keep this seperate as I dont want DVLA to c*ck things up for me. My car is assetial to my work, I travel 80 miles round trip and without the DL I have no job. Sorry this is such a short post but am at work on dinner time.
Speak to you all soon
Steve
Robert Winchurch said:Well Done Steve
What a great success story to go from 51 'apps' to zero is pretty fantastic. What has happened about you and your driving license? Have you been in contact with the DVLA and are they happy to allow you to continue to drive despite you original high count? Some times they need you to have a recorder 6 months clear before agreeing to you having your license back.
Apart from that it must be fantastic to have your life back ,well done you and well done your sleep clinic. Keep wearing the mask remember just because you feel better the sleep apnoea does not go away you only control it never cure it unfortunately!
Robert Winchurch
mobilityproducts4u.org
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Hi Steve,
first thing to do is to get your address changed you can if you are not careful finish up with a fine of £100.00 for having the wrong address on how long ago did you move?
Once you have your new licence back then send them the forms, did you have to sign any forms at the hospital to confirm you had been told of your sleep apnoea? If so the hospital may well have told them already, if you you didnt the just keep your fingers crossed.
If your apps are down to zero now and you have hospital proof that your sleep apnoea is properly under control there is no reason at all for you to have to loose your licence!!!
Good luck
Regards
Robert
Robert Winchurch
mobilityproducts4u.org
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Permalink Reply by Terry Vella on
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Robert and Roz, re the leaks, I use a FFM and it took a long time to get the leaks under control. I know it's frustrating. I have mentioned before and I'm nit sure if your doing it but have the hose coming from above your head and use mask liners. I believe the reason we get leaks in the middle of the night is 1. movement and 2. our faces relax when we are in deep sleep so the mask may be leak free when we start to go to sleep but with the muscles relaxing it becomes looser, not sure if that makes sense or is right just a theory. Also obviously different people have different shaped and sizes of faces so one mask will never fit all. Once you are reasonably satisfied with one, try to stick with it and tinkr a bit. I use a Resmed Mirage Quattro and have finally got it near perfect after a year. I also use a chin strap even though I use a FFM, it seems to hold it in place better. I have a head rest on the top of my mask which I put material on to stop it slipping and have adjusted the dial to get it to fit my face. It is difficult when we don't all use the same mask. I know you both are positive towards CPAP which is half the battle and just keep experimenting,like a curious scientist and you will get there eventually.
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thanks Terry, I just got my Mandibular advancement device back yesterday as it wasnt any use when they made it up. they have now put on an extension bar so at least when i feel like a break i can use this without feeling i have no 'support' at all. there's only so much struggling i can do in one night. i am waking up so exhausted, but saying that i think last night was a little better…sadly thought I find i have to wear the FFM fairly tight. I have tried it all ways and that seems to be the best… luckily i dont have to get up early and go out otherwise my face looks like its been run over lol.
I know they say not to over tighten the masks, but its pointless if its too loose. I wish they made different sizes in the head gear. I am currently using the small headgear on a large Responics Fitlife Mask…… I have no idea if its the same in al areas, but i have been given a different one to try as an when i wanted it….. i can't imagine for one minute how any of us would cope if we had to pay for all these.
I was using the optilife nasal, but found it irritated my nostrils and was in need of a chin strap as the pillow support allow wasnt keeping my mouth closed enough and kept slipping all night. i tried the chinstrap sent to me by phillips to use alongside the chin support on teh mask, but this just made everything worse. I havent tried it yet over night but i have found a very cheap alternative, and a cheap way of seeing if a chin strap would work is this...
http://uk.lizearle.com/books-and-accessories/soft-white-headband.html
OK it may not fit all heads… mine is quite small and teh velcro just about does up on top of my head… in fact it was always too big as a headband, but i'm glad i kept it.
I may try it also with the FFM as it may eliminate the mask marks… i could try it last night as I had washed it out and it wasnt dry. I'm just a bit concerned as ho what all this CPAP lark is going to feel like on a hot summer's night!!
Any suggestions?
have a good day everyone
hugs roz xx
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Roz, don't worry about summer, I'm in Australia and we have just come out of summer, I was panicking because I hate the heat and our summer's are warm, I wear a FFM, Chinstrap, Eye mask and Ear plugs, I found I was cooler with CPAP than without. Maybe it's the cooler air blowing on me. You may want to try turning the humidifier down in warmer weather. I've turned mine up a couple of degree's now that we are in Autumn.It's good that you are being innovative, I made my own hose lift, I make my own mask liners and I use the left over bits from the liners to wrap around the straps that mark my face. I don't get marks in the morning anymore. I also put the mask on first then the chinstrap, most recommend the other way around. Finally I put everything on, then attach the hose and turn my CPAP on.
Again, some suggest doing it the other way round, I do it this way because I can have everything ready then just plug it in.
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