No difference after 3 years!

[dial888]

Hi all. I was diagnosed with Apnoea over 3 years ago by the hospital sleep centre and given a machine. Since then I’ve changed machines (to a variable rate one after trying lots of different fixed settings on my old one) and about 6 different masks (started off with the very small nose pillow one, went to a few different full nose ones and now am on full face) but I have yet to feel better at all. On a very odd occasion I don’t feel tired through the day but most of the time I do. If anything I feel worse than I did before I got the machine – I feel dizzy in the mornings for example. Also I’ve noticed that since I started using the machine I feel muy breathing getting shallow and sometimes stopping when I’m sitting at my desk at work…this was never an issue before I got the damned thing.

To be honest if I could roll back time I’d put up with the tiredness and forget about the machine. But now even a slight doze leaves my coughing and choking if I don’t use the machine/mask.

The doctors and nurses at the sleep clinic are now pretty much just shrugging their shoulders. Is there anything else I can try to get this sorted? Willing to try anything to get this having a positive effect.

Machine: ResMed model Autoset spirit II
Mask: Fisher & Paykel Flexifit 431 full face mask with large insert
Settings: Mask - Mir full, Tube - 2m, Smart start – off, Air escape alarm – on

Any help much appreciated.

[Richard]

I am sorry to hear you are feeling no better after 3 years of CPAP therapy.

I can only offer you any help based on my own experience. I was diagnosed in October 2005 and have ever since spent the night on a ventilator for 8 hours min. Added to this is oxygen at 1litre per min.

But if you're not feeling the benefit: do you take oxygen, has any medic. suggested you should? I take O2 for 16 hours a day and it makes a big difference. It's a matter of 'gas-exchange': the O2 will help rid your blood-stream of carbon-dioxide, which may be hampering you. Have you undergone a titrated sleep-study; this will ultimately match your condition with the appropriate CPAP machine and setting.

Have you been prescribed diuretics or beta-blockers?

If you're saying the hospital staff are shrugging their shoulders 'cos they don't know what more they can do for you, then that suggests to me that either you don't co-operate very well or they have reached the limits of their knowledge and expertise - and there is lots more they could try.

Speak to your GP and get an overall view of your condition. See if he can refer you to another sleep-centre perhaps.

Again, are you over-weight? Are you eating a healthy diet? Are you watching your weight? Do you smoke? If you enjoy a drink, are you drinking alcohol just before you go to bed? These are other factors worth bearing in mind.

I hope this gives you some ideas and you will be restored to a reasonable level of health pretty soon.

Richard

[Tigers Fan]

Expectations

Hi dial888

You have me somewhat confused! Your post title tells us that three years of CPAP has made no differenece and then you go on to say you can't take a doze without using your mask to prevent coughing and choking.

Now, to my way of thinking, prevention of coughing and choking is one way of describing what CPAP is all about. Ergo, CPAP works for you.

Perhaps then you have conditions other than OSA which need treatment. There is a thread running at the moment which is about consultants not treating all the causes of symptoms, just the one presenting.

Richard's reply gives you lots to think about and action. I'll add that it seems to me it's high time you took some assertive action with your GP, PCT and Hospital Trust.

I'm also confused and curious about your association of your breathing becoming shallow and even stopping when you are at your desk with using CPAP. That sounds like a serious condition, in my non-medical opinion - unless you mean you fall asleep and are not wearing your mask.

TF

[dial888]

I am sorry to hear you are feeling no better after 3 years of CPAP therapy.

I can only offer you any help based on my own experience. I was diagnosed in October 2005 and have ever since spent the night on a ventilator for 8 hours min. Added to this is oxygen at 1litre per min.

But if you're not feeling the benefit: do you take oxygen, has any medic. suggested you should? I take O2 for 16 hours a day and it makes a big difference. It's a matter of 'gas-exchange': the O2 will help rid your blood-stream of carbon-dioxide, which may be hampering you. Have you undergone a titrated sleep-study; this will ultimately match your condition with the appropriate CPAP machine and setting.

Have you been prescribed diuretics or beta-blockers?

If you're saying the hospital staff are shrugging their shoulders 'cos they don't know what more they can do for you, then that suggests to me that either you don't co-operate very well or they have reached the limits of their knowledge and expertise - and there is lots more they could try.

Speak to your GP and get an overall view of your condition. See if he can refer you to another sleep-centre perhaps.

Again, are you over-weight? Are you eating a healthy diet? Are you watching your weight? Do you smoke? If you enjoy a drink, are you drinking alcohol just before you go to bed? These are other factors worth bearing in mind.

I hope this gives you some ideas and you will be restored to a reasonable level of health pretty soon.

Richard

Hi Richard, thanks for replying.

Never taken oxygen and It's never been suggested. O2 for 16 hours a day isn't a way I want to live.

Never taken diuretics or beta-blockers.

I've been in for 3 overnight sleep studies with all the wires glued to my head, body, fingers etc. I've seen a consultant 2 or 3 times and spoke to the sleep centre nurses countless times. My GP told me to get some fresh air (useless). I would say I'm as co-operative as possible.

I am overweight, but have lost 2 stones in the last few months with no measurable effect. A couple of more stone and I'll be at average weight for my height. I do drink and smoke, 3 or sometimes 4 nights a week. Often before bed. But I've done that all my adult life......does that kind of lifestyle rub against CPAP treatment? Before the machine I never felt dizzy and out of breath the next day....even when I did have a drink the night before.

Cheers

[dial888]

Hi dial888

You have me somewhat confused! Your post title tells us that three years of CPAP has made no differenece and then you go on to say you can't take a doze without using your mask to prevent coughing and choking.

Now, to my way of thinking, prevention of coughing and choking is one way of describing what CPAP is all about. Ergo, CPAP works for you.

Perhaps then you have conditions other than OSA which need treatment. There is a thread running at the moment which is about consultants not treating all the causes of symptoms, just the one presenting.

Richard's reply gives you lots to think about and action. I'll add that it seems to me it's high time you took some assertive action with your GP, PCT and Hospital Trust.

I'm also confused and curious about your association of your breathing becoming shallow and even stopping when you are at your desk with using CPAP. That sounds like a serious condition, in my non-medical opinion - unless you mean you fall asleep and are not wearing your mask.

TF

Hey Tigers Fan.

If it helps, the post should have said "no positive difference". My life is definitely worse since the introduction of CPAP. The coughing and choking thing never happened before CPAP, so ergo the introduction of it has caused it to this degree and the shallowness of breath....which I never experienced before.

I feel as if I've pushed as hard as I can for the last 3 years or so to get something sorted and I'm now at dead ends with the sleep centre, consultants and GP (especially). That's why I'm on the boards.

[Richard]

Hi dial888

From what you are telling us I would say your problem is a respiratory one rather than sleep apnoea alone. There are over 40 lung ailments, my guess is that one of those could be the root of your problem.

Try the British Lung Foundation web-site: www.lunguk.org and then go back to your GP. But whatever, you are doing yourself absolutely no favours by smoking.

regards

Richard

[Tigers Fan]

Shoot the messenger if you like, but ...

Can you conceive of the idea that in the three years since you've been on CPAP, you might have developed another condition that may or may not be connected with OSA but is giving the symptoms for which you blame CPAP?

Just because you measure time from the start of CPAP does not mean that all your troubles stem from CPAP.

You've hit a wall with the sleep centre, consultants and GP (especially), so I suggested other avenues you could try.

Or you can choose to stay stuck.

You asked for help, I tried to offer it, is all.

TF

[dial888]

Hi dial888

From what you are telling us I would say your problem is a respiratory one rather than sleep apnoea alone. There are over 40 lung ailments, my guess is that one of those could be the root of your problem.

Try the British Lung Foundation web-site: www.lunguk.org and then go back to your GP. But whatever, you are doing yourself absolutely no favours by smoking.

regards

Richard

Cheers Richard. I have been thinking along those lines but thought I'd ask around here in case there was anything connected with the apnea that I was missing....some way of using the machine that I'm overlooking or something. Another trip to the GP I reckon.

It does seem very coincidental though, the symptoms I described were apparant within a month of using CPAP. I still do feel it's connected. I've noticed other posters here saying they feel short of breath and dizzy (especially in the mornings) so it would appear I'm not alone in that regard.

[jasonuk75]

other health probs

Hi everyone

to jump in i;ve found out the hard way symptoms whilst on cpap are not always down to cpap
since January i was waking up thirsty, really tired and feeling like death, i complained to sleep clinic i needed a auto cos was great on auto for first wekk of treatment, i was very assertive, prob over assertive with sleep clinic cos i was desperate to feel better felt so ill i wanted to die, i;m not even depressed could feel my body giving up
3 weeks ago was diognosed with diabetes type 2, now cpap treatment in more comftable no more thirst increased thirst, still tired but have 3 diffrent conditions wgich could cause that, pancreatius, sleep apnea and diabetes, as well as 11 diffrent meds on repeat to take daily, so cpap was not the problem in me was confinced it was went to sleep clinic quoting nice guidline saying you have to give me a auto machene i was awfull cant put into words how ill i felt, now i;m sleeping 8 hours or more a night without waking, and i dont snore as long as i use cpap
so please anyone if u feel ill tell ur gp wots going on, wouldent wish wot ive been through on anyone

Jason

[gargler]

Well done Jason. Better news at least. Good job you didn't murder someone though.

[dial888]

Cheers Jason - that's some good advice right there. I have an appt with the GP next week on another matter - I'll bring this up then.

Ta