If in any doubt - ASK!

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Permalink Reply by Joanne Hollett on September 11, 2011 at 1:10

Well I'm 22 stone and hoping that I can be as successful as Rosemary (well done you)... FYI I was also told on my first visit (before I was given a machine) that I should test myself after a length of time on treatment by not using it for a few nights to see if I still needed it... the mind boggles!

Kath Hope said:

I certainly was amazed that a sleep medic would suggest trying nights without a machine :(  Apart from anything else, a night with no machine easily brings back all the old symptoms....certainly in my case.  I used to call the machine the C#AP machine, but I can tell you, it's my best friend now :)

Rosemary Kemp said:

I think I told everyone (I ceratinly told Kath) that my hospital suggested that I deliberately take nights off the machine to test whether I thought I needed a new sleep study or not. I certainly discovered that I couldn't cope without the machine and although it cramps one's style (such as when you go away on holiday and have yet another bag to lug around plus concerns about different voltages etc in different countires) we do have to use it all the time for sure. Kath was amazed that I had been given that advice.

Maybe it depends on an individual's reasons for being on cpap but I suspect that both Caveman and Kath are completely right about this!

Rosemary

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Permalink Reply by Kath Hope on September 11, 2011 at 1:29

Oh Noooooooo!  Not another one!!!  Take no notice!  As for the weight loss, well Rosemary's a prime example of how a lot of people manage to lose weight fairly easy once on successful CPAP treatment.  Another member we have on here is Suzie Stiles who's lost 10 stone.  Although I wasn't what you'd call obese, I still managed to easily lose 2.5 stones after I'd been on treatment a while, and for the first time ever got into a size 12!  You keep up the good work Joanne, and the expression 'watch the pennies and the £'s will take care of themselves' comes to mind, but in the case of OSA victims 'watch the lbs and the stones will take care of themselves' is more apt LOL x

Joanne Hollett said:

Well I'm 22 stone and hoping that I can be as successful as Rosemary (well done you)... FYI I was also told on my first visit (before I was given a machine) that I should test myself after a length of time on treatment by not using it for a few nights to see if I still needed it... the mind boggles!

Kath Hope said:

I certainly was amazed that a sleep medic would suggest trying nights without a machine :(  Apart from anything else, a night with no machine easily brings back all the old symptoms....certainly in my case.  I used to call the machine the C#AP machine, but I can tell you, it's my best friend now :)

Rosemary Kemp said:

I think I told everyone (I ceratinly told Kath) that my hospital suggested that I deliberately take nights off the machine to test whether I thought I needed a new sleep study or not. I certainly discovered that I couldn't cope without the machine and although it cramps one's style (such as when you go away on holiday and have yet another bag to lug around plus concerns about different voltages etc in different countires) we do have to use it all the time for sure. Kath was amazed that I had been given that advice.

Maybe it depends on an individual's reasons for being on cpap but I suspect that both Caveman and Kath are completely right about this!

Rosemary

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Permalink Reply by Rosemary Kemp on September 11, 2011 at 16:07

Blocked noses and colds are a problem as well aren't they?

I bought a full face mask to help me when the nasal mask was almost impossible to use when I had a really bad cold but the full face mask and I were not exactly great friends. (I always get leaks with my full face mask) So I made a point of breathing effectively through my nose before attaching the nasal mask when I had a cold last time and it really helped.

Women who've had children will know what I'm talking about here (sorry fellas): I used the breathing techniques for when you go into labour. The sort where you breathe in slowly counting whilst you breathe. Then you breathe out even more slowly counting one extra number at the same speed each time until you are the slowest possible! Once the breathing is really regular, I stick the nasal mask on! This also relaxes all your muscles so you are more likely to fall asleep. I do this every night now, not just when I have a cold.   

Apart from that there are times when one allows oneself to get almost too tired to start messing about with masks etc but we just have to be strong minded and not go to bed so late that that happens. (We are human after all and sometimes we do things we shouldn't!)

As for when we have D&S or tooth problems, of course we have to adapt as best we can. I found that one of my nasal masks impacted on my teeth and actually broke one side of my bridge! That was fun! The dentist made me a gum shield to try to help (like rugby players wear) but it was so much worse! My gums were really sore when I tried a night with that on.

I found that a gel nasal mask designed for children helped then and things were bearable. It was my hospital who found the child's mask for me. We have to call out for help. There's the topic again! If in doubt - ASK! If we nag the sleep technicians, they do help but they are not foolproof by any means! Good luck with all of this everyone! What worked and works for me doesn't necessarily work for you. Then you have to be able to understand my gobbledy gook description of the breathing.

Rosemary       

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Permalink Reply by Richard Mundy on September 12, 2011 at 0:37

This thread has wandered off-course a little, however, the original points made by Joanne are important and reveal the shortcomings of the various sleep-clinics around the UK; and not just sleep-clinics alone, I guess.

‘If in any doubt, ask’ sums up the problem neatly.

The average NHS-user, and that’s about everyone of us, too often takes the view that, in a consulting-room, we are in the presence of a superior being: someone who possesses all the answers to address our condition or disorder. A number, in my experience, go to lengths to encourage that feeling of superiority, and because of that many patients would not dare to interrupt his diagnosis, let alone contradict what is being said.

It is only after you’ve read the book, seen the film and bought the T-shirt that you have any idea of what OSA and CPAP-Therapy is all about: it is not until the initial diagnosis that your disorder is given a name: Obstructive Sleep Apnoea.  What on earth is that?

This is the first time you’ve heard of it, questions are forming in your mind.  Your consultant talks of CPAP-Therapy, your AHI-index, blood-saturation levels and the dreaded terms ‘compliance’ and the DVLA.  And you are going to have to wear a face-mask all night.

But, on the receiving end of this sudden gush of technological verbiage, you simply don’t know what questions to ask.  It’s all very new to you.

You’re not given the full story, at least not in a way you can understand and relate to yourself. To make matters worse, the hospital staff dealing with you may appear flippant and wanting to move onto the next patient; added to this is the patient’s feeling of not wanting to bother them too much because they’re very busy right now.

So, you come away with only half the story, and that’s if you’re lucky.  Your life is going to change and you’re going to have to go along with it. You should have asked some questions, but you didn’t know what questions to ask.

You try your CPAP machine and it’s fitted with a nasal-mask; but you breathe through your mouth when you’re asleep. Nobody asked you the question, how do you breathe, but already you have a problem.  You have arthritic fingers and cannot manage the clips to put the mask on properly, but no-one asked the question and you didn’t want to bother them.

 And what about the leaks? Nobody told you about those, and again, you didn’t like to ask.

They may not have told you that you must surrender your driving-licence; so you may find that out the hard way.

The treatment of COPD and OSA has come a long way over the last 10-15 years, but there is still a long way to go.  Some sleep-clinics have better resources and more competent staff than others, some can put their patients at ease better than others.

OSA can be effectively treated and the patient gets his life back, but the standard of care differs across the country.  Already PCTs are refusing to supply CPAP-machines, despite NICE having ruled these are the gold standard for the treatment of OSA and many sleep-clinics have a woeful disregard for the critical details of their patients’ care.

 

 

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Permalink Reply by Joanne Hollett on September 12, 2011 at 1:55

Thank you Richard, by sharing my experience I was trying to help, I am not professionally medically trained and do not pretend to be as such, neither do I pretend to know all the answers, but through my years of working in a hospital/medical environment I have picked up a few things and it has helped me to help others. They say a little knowledge is a dangerous thing, but I beg to differ, I used to work in a GP practice, after I left my mother who was a patient there requested a repeat prescription, at the time she was on Metformin for diabetes, she had been given paracetamol, same size, same shape, same colour, she was 89, partially sighted and just thought they had changed the lettering on the tablets, had I not been around she would have taken them regardless, the outcome could have been serious.  I worked in a busy NHS hospital as a medical secretary, it was not unusual to come across a patient who had been mis-diagnosed, or even worse had the wrong body part removed due to a surgeon's incompetence.  I have no problem in asking the question, I know many people do not have the confidence to do so.  You are correct in your observation that some in the medical profession have this "superior - I know better than you" attitude and sadly they do not encourage questions.  I'm lucky, I'm a strong minded person and capable of challenging them, even if at the end I am proved wrong and they are right it is still beneficial to ask. I hope everyone who reads this has the courage to do so, please do not be afraid of asking, even if you think it makes you look stupid.  It is better to appear the fool and get the right answers and the right treatment than to actually be the fool and take the medics word for it, even if you are certain in your own mind and heart that there is something not quite right.  Have confidence in your convictions and ASK!  Best wishes and good luck.

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Permalink Reply by Martin Nightingale on September 12, 2011 at 9:27

Found the above very interesting.  Let me add my story - keep purservering!

Had Slleep study 8/2003 at Broomfield Hospital, Chelmsford.  Diagnosed with Sleep Apnea but no funds for machine so referred to London Chest Hospital who did another Sleep Study 3/2004 and finally received CPAP machine.

Had problems e.g. Drop in pressure by morning.  Further Sleep Study with my own CPAP machine in 8/2005 so pressure increased.  Suffered Dry Throat, Humidfier added 10/2005.  2006 still not totally happy with machine so Consultant prescribed Modafinal tablets.  I take 2 after breakfast and 2 more in the afternoon if driving.

Initially had mask over nose only, then chin strap added as mouth still opened.  Chin strap did not always work so for the last 2 years have full face mask.  Seems to work better.

2009 signed off by Consultant.  Now only attend London Chest for annual service of CPAP Machine and new mask etc.

Still occasionally have "Damp" face but no "Sore Nose"!!  Life is more or less back to normal.  What ever that is for a 68 year old!!!

During the whole period of treatment there has been no mention of readings or averages, however I do wear my mask every night!! 

 

Anybody else use Modafinal Tablets?

 

Martin

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Permalink Reply by Cathy Smith on September 13, 2011 at 10:42

Great idea about the sleep diary Jo, never thought of it before. I am going to start one tonight.   It's 2 a.m. and I just woke up gasping and spluttering (this was with my mask and bipap on).  Since I couldn't go back to sleep I am reading the apnea blogs.  I don't think this wonderful light weight mask (Mirage FX) is working for me.  Somewhere there must be a mask designed for side sleeping mouth breathers!

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Permalink Reply by Kath Hope on September 13, 2011 at 10:52

Cathy, it sounds to me that you've woken up spluttering due to having a Mirage Nasal mask on, whereas you state you're a mouth breather.  Have you got a full face mask over there that you can put on to try to get back to sleep with?

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Permalink Reply by Martin Nightingale on September 13, 2011 at 16:52

Kath

 

Agree completely a full face mask works wonders. Had mine 2 years and wouldn't go back to the nose only style.

 

Martin 

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Permalink Reply by Kath Hope on September 13, 2011 at 17:02

I couldn't wear a nasal mask as have always been a mouth breather.  However, since my nose op I can now breathe throuth my nose, but still don't want to use a nasal mask in case my mouth opens when I'm asleep.  I'm happy with the full face ones fortunately.

Those Modafinal tables......are they for daytime tiredness?  I've just read your other post which says there's never been a mention of your AHI results.  It would be interesting to know how successful your CPAP treatment is.

Martin Nightingale said:

Kath

 

Agree completely a full face mask works wonders. Had mine 2 years and wouldn't go back to the nose only style.

 

Martin 

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Permalink Reply by Martin Nightingale on September 13, 2011 at 18:08

Kath

 

Modafinal Tablets work wonders!!  They are specifically to keep you awake during the day.  On prescription only not sure if every doctor would be aware but in my case prescribed by Consultant at London Chest.  So far no side affects unless you take more than 4 in a day.  I did this once and felt I was on a high and flying round the room!!  Never again!

 

My CPAP treatment seems to be successful, at least no falling asleep at the wheel!!

 

Apparently during World War 2 Modafinal was given to the Pilots of the Canadian Air Force to keep them awake during long missions.

 

Martin

Kath Hope said:

I couldn't wear a nasal mask as have always been a mouth breather.  However, since my nose op I can now breathe throuth my nose, but still don't want to use a nasal mask in case my mouth opens when I'm asleep.  I'm happy with the full face ones fortunately.

Those Modafinal tables......are they for daytime tiredness?  I've just read your other post which says there's never been a mention of your AHI results.  It would be interesting to know how successful your CPAP treatment is.

Martin Nightingale said:

Kath

 

Agree completely a full face mask works wonders. Had mine 2 years and wouldn't go back to the nose only style.

 

Martin 

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Permalink Reply by Marion@As I Live and Breathe on September 13, 2011 at 18:32

I've always used a nasal mask with a chin strap to help keep my mouth closed, as I am naturally a mouth breather.
It's always worked fine for me.

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