Sleep Apnea or not?

[adrian100]

Hi all, I thought I would post to pick your brains :P

I have been diagnosed with Sleep Apnea and using CPAP for about 2 years. Until now all was quite well. For the last few months my machine is showing as being on for many hours (average use basically) BUT only showing 1.3 hours as actually being used (back pressure from breathing showing I'm using the mask) - not sure if this is the 'Compliance'. Anyway still feeling very tired and have gained weight (which may indicate why the machine is not showing any output from me since Hypopnea is a more weight related problem as far as I understand it) since first starting therapy.

I know for a fact the mask is on 6-8 hours EVERY night without fail, yet my clinic says it's showing as 1.3 hours a night. Now I know there is a similar condition called Hypopnea. As I understand it this causes very shallow, slow breathing. What I am wondering if anybody has had similar problems, is if my breathing is very slow and shallow would that be a possible cause of my machine showing as being 'used' 1.3 hours instead of 6-8 hours it should be showing? Like as if the 'back pressure is not enough to register on the CPAP? Maybe it's Hypopnea I have, not Sleep Apnea??

It makes me look bad when I tell my Respiratory clinic I'm using the mask and the machine is saying, "no, u don't!" I've lost my driving licence because of this so it's important I get a better understanding as to why my machine says I don't use it. Any thoughts?...

Regards

Adrian

[Tigers Fan]

Remstars do not record "large leakage time" as time is use - even though you are wearing the mask.

TF

[adrian100]

Hi

Well as I have said I have about 6 hours a night missing that my machine is saying. I think six hours of leakage would be a bit too much and as far as I'm aware I have no leakage, if I do it's very minute. Until I get answers from the hospital as to why the machine is not recording my actual usage I think I will believe I have Hypopnea rather than Apnea.

Until I'm told otherwise it is the only reason I can think of as to why my machine is not showing decent compliance (horrible word BTW, like as if it's the patient's fault). If my breathing is so shallow and slow I think that may not register with any back pressure on my machine, thus compliance is showing very low. Just a theory at present though, but I'm not happy with the hospitals advice (or lack of). I am going to find out the cause of the machine "lying!" lol.

Adrian

[Richard]

Hi Adrian,

More to the point than the machine 'lying' about the usage time, is the evidence of your own health, i.e. is the machine doing the job for you? If you have been using it for two years (the same machine?) has it been checked and serviced regularly?

If you wake in the morning feeling alive and refreshed, then the machine is dealing with your apnoeas and hypopneas satisfactorily.

Richard

[adrian100]

Hi

The machine was last services February 2010. I take it with me every appointment I have, so far I've had 4 appointments this year because of the problem I am currently having. For the first 2 years it worked nicely but for some reason the last few months I have been feeling excessively tired again and as the machine is basically saying it's on for 6-8 hours but only 1.3hours of that has been therapeutic I have lost my driving licence.

I spoke to the hospital again today because I feel annoyed as I KNOW I wear the mask every night, all night. According to the hospital if they were to tape the mask to a wall it would give a high theraputic reading if there were no leaks. So either I switch the machine on and leave the mask off or the machine is faulty (the hospital says no) or there's large leakage whilst I sleep.

At the moment I don't feel refreshed or awake. I am waiting to see the consultant again so maybe he will have more ideas. My worry is the machine will always read low therapeutic value even if I wear it every night all night. This means I never get my driving licence back even though the machine is showing as being 'on' regularly. *sigh*

Adrian

[Barely Awake]

Few things to look at that may help.

I had a split in a hose at one time, being on one of the ribs I didn't hear it when setting up and didn't notice any loss of pressure. They can be tricky to find so if you haven't changed the hose in a while it may be worth just trying a new hose.

Have you cleaned/changed the filters recently?

Lastly, is it worth asking the clinic to lend you an auto or some other machine that records more detail, or even an oximeter?

[Richard]

Try phoning the customer services department at the CPAP manufacturers, they should be able to throw some light on the issue.

But I don't understand why, if you've been on CPAP Therapy for 2 years, you still haven't had your driving-licence back? In very general terms, if you surrender your licence once you're diagnosed, and you respond to treatment, you should have your licence returned between 6 months and a year at the very outside.

Richard

[Tigers Fan]

Because he can't show compliance - he needs four and the machine records 1.3 hours.

I had a period of large leakage - as defined and decided by my REMstar APAP - and didn't know anything about it except the machine told me so and I was tired in the day again.

It costs nothing to try a re-adjustment of your headgear.

TF

[adrian100]

Hi all, thanks for replying

I will check the hose thoroughly to make sure there's not leakage from there. The filters are pretty new. The situation ATM is the clinic has said they have done all they can and have now referred me back to the consultant I saw originally 2 years ago. Hopefully I won't have to wait too long.

As far as my driving licence is concerned it is only within the last 2 weeks I have had to give it back, first because I am tired and second giving it back voluntarily means I can drive again when I am better (if!) whilst they do their checks.

Tigers is right, compliance is below 4 and until that is sorted out I have no chance of getting my licence back, even if I feel better.

On the upside for me I am currently being assessed for weight loss surgery and hopefully if this goes ahead it will cure my Apnea (I didn't have Apnea before I became ill and gained weight). In the meantime of course the CPAP therapy should be working as it always has - but it's not.

Thanks again for your all your input.

Regards

Adrian

[Richard]

Hi Adrian,

I am confused. If you have been on CPAP for two years, how come you only surrendered your driving-licence a couple of weeks ago? Did no-one tell you that is what you should do, once you're diagnosed?

So far as your CPAP giving the incorrect reading is concerned, it seems this is one incident of a much wider problem. In another case, an OSA patient goes for her first consultation since starting CPAP to be told she has missed 17 nights of CPAP over a three-month period. She owned up to having missed three nights through being unwell, but not seventeen.

The respiratory technician goes away to re-examine the read-out; he comes back and confirms she missed three nights only, not seventeen.

There have been a number of people here complaining about the off-handed attitude of some sleep-clinic staff, and it does beg the question do the staff understand how to analyse a data print-out.

Supplying a mouth-breather with a nasal-mask seems a frequent error, too.

If, because your livelihood depends on it, you've surrendered your licence and want it back PDQ, are the respiratory techies fully acquainted with the importance of compliance?

Richard

[Jpl1953]

Surrendering driving license

All this talk about surrendering your license confuses me.
As far as I know the law says you have to fill in a form telling DVLA that you have sleep Apnoea. At that point you don't have to send your license back although you would have a moral obligation not to drive if it affected you during the day.
They then assess the information you give them and check with the clinic etc. If you are on CPAP and compliant then you keep your license if not they will then ask you to surrender it.
Having recently been diagnosed I filled the form in and sent it off by the time they did their checks I was on CPAP and compliant so they wrote to me and said I could keep my license and that I should let them know if things change.
Have I got it right?

[Tigers Fan]

You have it exactly right, Jpl1953.

The requirement is that you inform DVLA that you have a notifiable condition - OSA, diabetes, etc - and they will tell you what is required about your license.

There is absolutely no need to lose your license if you get the timing right - be on succcessful therapy by the time you return the notification forms. The fly in the ointment is the NHS and the time they take to get a machine dispensed.

If you rely on the NHS to talk to the DVLA about your ability to drive, you can pretty much expect to lose your license for a while.

TF

[adrian100]

Hi Adrian,

I am confused. If you have been on CPAP for two years, how come you only surrendered your driving-licence a couple of weeks ago? Did no-one tell you that is what you should do, once you're diagnosed?

So far as your CPAP giving the incorrect reading is concerned, it seems this is one incident of a much wider problem. In another case, an OSA patient goes for her first consultation since starting CPAP to be told she has missed 17 nights of CPAP over a three-month period. She owned up to having missed three nights through being unwell, but not seventeen.

The respiratory technician goes away to re-examine the read-out; he comes back and confirms she missed three nights only, not seventeen.

There have been a number of people here complaining about the off-handed attitude of some sleep-clinic staff, and it does beg the question do the staff understand how to analyse a data print-out.

Supplying a mouth-breather with a nasal-mask seems a frequent error, too.

If, because your livelihood depends on it, you've surrendered your licence and want it back PDQ, are the respiratory techies fully acquainted with the importance of compliance?

Richard

Hi

Not sure where the confusion lies tbh.

I was diagnosed and treated with CPAP within 2 weeks (2 years ago). I was told by the clinic that I had to tell the DVLA. I did this but as I was on successful treatment (CPAP) I could keep my licence. So I Never had to give my licence back from day 1. The reason I have had to surrender it now is because my machine is showing 1.4hrs (gone up slightly) of compliance. Compliance I am told by my clinic must be at least 4hrs. Up until recently I have never been below 4 hrs compliance so I have never had to surrender my licence.

As I don't rely on my licence for a living it is only an inconvenience I have lost it, but the reason I made the thread was to see if other people have had similar problems. I.e, I say the mask is on all night (6-8hrs) every night, the machine/clinic says the machine is on 6-8 hours but basically the mask is only on for 1.4hrs! Of course I like my health to be at risk and waste electricity by turning the machine on and not actually using it! (JK by the way).

I guess I will wait and see if I can get answers from my consultant when I get to see him, all the same I hope other people are not having the same problems.

Take Care all

Adrian

[andreaF]

Re:Sleep Apnea

Sleep Apnea is a serious and potentially life-threatening condition that is far more common than generally understood. This should be treated. CPAP is the most common effective treatment for sleep apnea but some don't like using it. Other people with this condition prefers surgery. There's a news that the International Robot Exhibition has a lot of curious showpieces, including an anti-snoring system invented by scientists from Waseda University. They introduced Jukusui-Kun, or “Deep Sleep,” a robotic bear-shaped cushion. The bear gets individuals who snore to move and stop making a racket. Article resource: Japanese inventors release robot bear that could curb snoring.This is very helpful for those with sleep apnea.