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CPAP Therapy Not Working
Hi all,
I haven't written in here for some time now. For some reason my CPAP is still not working. I changed my mask from the Fitlife back to the Quattro FX. The reason for this was that the Fitlife was having loads of leaks, although I didn't feel it overnight but sleepyhead showed that it was. With the Quattro FX I am having very few leaks, but I am still snoring and still having variagle events overnight, anything from 20 - 46. Now I waited months on an appointment to see the consultant as it is a nurse led clinic that I attend, but when the appointment eventually came, it was with nurse not as I had been led to believe with the consultant. She then told me to come back in a couple of weeks (this was when I changed from Fitlife back to Quattro FX) and at this appointment she agreed that she would speak to the consultant as the nurses could do no more for me :(, She told me she would be in touch with me in the next couple of days but up until yesterday I had heard nothing. Now I am on night duty and was sleeping when I received a call (to cut a long story short) it was from my GP surgery telling me that my GP asked them to call to make a non emergency appointment as Ninewells had suggested it and she would only tell me it was the consultant who had written suggesting this. I could not get back to sleep, so decided to get up and phone the sleep clinic, no nurse available to Monday now they told me, but the receptionist there was really nice and told me that the consultant had wrote to my GP to suggest Madafanil which made me more angry as he was not even going to see me. My appointment with my GP is not till the 10th Oct. so I am going to try and speak to one of the doctors at the SASA AGM to see if I can get anywhere with them. Madafanil may keep me awake during the day but I cannot see how it can help with the sleep apnoea. Has anyone had any trouble like this before and can they give me any suggestions as to what they think I should do about my CPAP.
Thank you,
Isla x
Views: 171
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Well Isla, you know my view of this as we've emailed lots of times and your clinic need to be helping you (seeing as they have control over your settings). Pleased you're going to the Scottish Sleep Apnoea Event, and you need to write down your questions so you don't forget what to ask. 'Modafinil' is the drug you're talking about (rather than 'Madafinil'). Hope you don't mind me correcting you, but people might be Googling the wrong name LOL. Prescribing you this is a cop-out and just treating the symptoms rather than the cause. You need your machine setting correctly for the best therapy - I don't think which mask you use is the problem - it's the fact that your machine needs setting correctly to stop the snoring. If you're not getting the correct help you need to change sleep clinics!!
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Permalink Reply by gina on
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hi Isla
well Isla sorry to see you are having problems i struggle for ages in the end due to a specialist who was so u helpful to the point he just discharged me with no treatment! It is quite a long story and will not go in to it now but i know you most be fed up of trying but please if you are not happy with your care go some where that will help you it is your choice now a days to ask your Gp to be referred to a specialist who actually a sleep specialist instead of a respiratory one . i ended up going to a specialist MR OKO in Boston 3 hours away from my home but has been worth it he changed my machine to an apap changed my mask and that was it my first night i sleep 7 hours with out even getting up !! Before this i was classed as been insomniac !! Just do not give in find some one to help it is your life not any one else push for what you think is right !!! email me any time you need to i aren't an experienced user but i do know what it is like when things are not working take care xx
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Permalink Reply by Isla Deuchar on
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Hi Kath & Gina,
Thank you for your replies, yea I am getting no where with the sleep clinic, Gina apparently the doctor Smith that is at the sleep clinic now is a sleep specialist but I am getting nowhere with him as it was the nurse who spoke to him so never got to see him but he sent a letter to my GP instead of seeing me. I am going to SASA agm with Lisa and Linda, so have got a loads of questions for them Kath and will see my GP after I have been to the agm and pressurise him. I have been in my settings Kath, I am on the same machine as Linda and on auto one. I even checked the EPR and it is enabled and at 3. I did bring down the settings to 17 at one point but it stayed at 17 all the time then so I changed it back to 20. I will try also and see if I can speak to the clinical director of dept sleep medicine at ERI which is where I asked my GP to refer me ages ago as Dundee were no help. I'm glad things worked out for you Gina and I will let you all know how I get on and ty for advice.
Isla xx
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Isla, Resmed have got in touch with me to say they would be more than happy to help you, so can you get in touch with them directly on freephone 0800 9177071? I am sure your machine is fine, as you have one of the best. However, even the best need to be set correctly for us all. Good luck.....
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Thank you Kath, just in, going to have a cuppa then will give them a phone as its getting near closing time for them :)
Isla xx
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Me again lol, right ty for that Kath, have just spoke to Resmed and they say it looks as if the settings on the machine are all correct but definately sounds as tho the treatment isn't working :(, She agrees to me asking at the SASA all these questions that I want to know. Then if I don't get answers there I am going on a war path with my GP :(
Ty for your support and you as well Gina :)
Isla xx
Isla Deuchar said:Thank you Kath, just in, going to have a cuppa then will give them a phone as its getting near closing time for them :)
Isla xx
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