CPAP Machine

[Billyc33]

Hi All
I got a cpap machine yesterday 29/09/09 from Aberdeen royal Infirmary and I used it last night It was HORRIFIC I woke up in the morning with swollen gums a severe mark on the bridge of my nose and a temper that was beyond anything id felt before as for my wife she looked terrible she was drained and had not slept due to the noise of this stupid machine. I have returned it and cancelled all further appointments whith the sleep clinic.
I suggest they call them CRAP machines and an easy solution for divorce.
I wish the consultants would listen to the patient a task which seems impossible for them, perhaps if they listened instead of using their ego more people would be cured.
I will now try other ways to cure myself
NHS no thanks

[GrumpyBiker]

Great perseverance there....

Sounds like you had the mask too tight.

CPAP has quite literally given me a new lease on life. It is not however, a miracle cure and it needs some input from the patient to make it work. Just quitting will not help.

Andy

[Billyc33]

CPAP Machine

Thanks Andy i am glad it help you but my point is that the consultant would not
listen to me or my symptoms etc.
That machine was a nightmare for me and my wife and I will never have another one in my house, I know the dangers of strokes/ heart attacks etc but i would rather have a short happy life than a long life of hell with these machines.

Just letting people know my experence.

Billy

[Billyc33]

Great perseverance there....

Sounds like you had the mask too tight.

CPAP has quite literally given me a new lease on life. It is not however, a miracle cure and it needs some input from the patient to make it work. Just quitting will not help.

Andy

Hi Andy,
Thanks for your reply just letting others know of my experience
It was a horrific time and thought people should know what happened.
I do know of the risks eg, heart attacks, strokes but if thats the best help I can get from the NHS , I will take the chance.

Billy

[Tigers Fan]

Yet again!

Hi Billyc33

The choice is yours and I respect the one you made.

I'm going to make two assumptions next -1. that you were given a CPAP machine because you have been diagnosed with OSA, or at least, suffer from daytime tiredness; 2. that you are a driver

People who suffer from daytime tiredness have a legal obligation to inform the DVLA of the fact. The DVLA will suspend your license till you are no longer sleepy during the day.

I believe daytime sleepy people have a moral obligation not to drive - as the TV news regularly attests, it's fatal to do so.

If my assumptions are wrong, please ignore me.

TF

[James @ Intus]

Seems liek your first experience was made difficult by a noisy machine and a poorly fitting mask. Both can be overcome. But if CPAP isn't your thing, you can look at mandibular advancement splints like SomnoDent.

If your OSA is because of being overweight, going back to a healthy BMI is often reliable way to also cure OSA for real. But most find that harder than sticking with the machine.

[Billyc33]

Hi Billyc33

The choice is yours and I respect the one you made.

I'm going to make two assumptions next -1. that you were given a CPAP machine because you have been diagnosed with OSA, or at least, suffer from daytime tiredness; 2. that you are a driver

People who suffer from daytime tiredness have a legal obligation to inform the DVLA of the fact. The DVLA will suspend your license till you are no longer sleepy during the day.

I believe daytime sleepy people have a moral obligation not to drive - as the TV news regularly attests, it's fatal to do so.

If my assumptions are wrong, please ignore me.

TF

Hi
I am glad you respect my choice because by now i would be divorced and after being so out of my head after that crazy machine probably in trouble of some kind.

Your assumptions were right I was suffering day time sleepiness in MARCH 2009 not another episode since. I also drove from Aberdeen to Blackpool non stop ,NO Drowisiness , Then Blackpool to aberdeen everything perfect.

I can assure you that as soon as i got home from the consultant the first thing i did was contact the DVLA. I could not agree more with what you say about driving when tired but I also say the same thing about drink,drug driving.

Billyc33

[Billyc33]

Seems liek your first experience was made difficult by a noisy machine and a poorly fitting mask. Both can be overcome. But if CPAP isn't your thing, you can look at mandibular advancement splints like SomnoDent.

If your OSA is because of being overweight, going back to a healthy BMI is often reliable way to also cure OSA for real. But most find that harder than sticking with the machine.

Hi,
Thanks for your reply i am afraid that one experience like that is more than enough for me. I can not understand why the morning after I used the machine I was like a crazed drug addict ( I dont do drugs unless perscribed)

The reason for my OSA is depression and the wieght gain it causes.
As i tried to explain to my consultant whom seem to turned deaf when I spoke was that I have suffered depression for over 40 yrs and depression makes me comfort eat , I get bigger , more depressed, Eat more etc.
I asked for medication to banish my appetite and to keep me alert , such as Adderall,Ritalin (methylphenidate) to name just two.
As i tried to point out OSA is a symptom of an underlying condition but like I said he would not listen.

So rather than have any more confrontations with my consultant i have decided to take my chances and try and diet on my own

Just hope no one else gets the same treatment as me

Billyc33

[James @ Intus]

I see what you mean. But it would have a beneficial impact on that cycle if OSA was taken out of the equation.

It then often works like this.

You treat the OSA so the body is under far less stress. You sleep better too, objectively at least. These two facts tend to have a massive impact on depression. Reduce the depression, you reduce the carb cravings. Reduce that, and you'll loose the weight more easily.

So yes, OSA perhaps is a symptom, but itself also becomes a cause of further need for eating. Getting under control will make the other endeavours much easier.

Another thing to look at is bright light therapy. The Litebook for example has bene proven to reduce carb cravings.

[Billyc33]

I see what you mean. But it would have a beneficial impact on that cycle if OSA was taken out of the equation.

It then often works like this.

You treat the OSA so the body is under far less stress. You sleep better too, objectively at least. These two facts tend to have a massive impact on depression. Reduce the depression, you reduce the carb cravings. Reduce that, and you'll loose the weight more easily.

So yes, OSA perhaps is a symptom, but itself also becomes a cause of further need for eating. Getting under control will make the other endeavours much easier.

Another thing to look at is bright light therapy. The Litebook for example has bene proven to reduce carb cravings.

Hi James,

I do understand what your saying and I am glad of your help
and I can see why you say that treating the OSA would help
but since I have suffered depression for the last 40 yrs and
only suffered OSA in the last couple of years and just diagnosed
last month, Also the reaction from the cpap machine was something I
will not go through again. I have never had such an episode before
and will not use that again.

Billy

[Alleycat]

HI Billy
I'm sorry to hear about your experience, but to diss the NHS and CPAP from one night's bad experience is a bit harsh.
It sounds like you had a badly fitting mask and possibly a literally crap machine. With a good mask fit and a new machine the machine should not be noisy at all.
Sometimes it does take a while to the get the right mask for you and some people will go through several before they find one they are comfortable with. If your mask was really badly fitted it is possible that you weren't getting any therapeutic pressure-just air blowing in your face all night- hence the sore gums and feeling crap the next day, depending on the type of machine you had this could be easily detected from downloading the machine. You didn't really give the CPAP team a chance to help you.

CPAP is the gold-standard and most successful treatment for moderate to severe OSA but it is not the only treatment as others have mentioned. Cancelling all appointments is kind of cutting off your nose to spite your face as your consultant should be able to refer you on if you really are so against CPAP.

OSA and depression often go hand in hand and although you say you have only had OSA for a couple of years (you may have had it longer without knowing) the OSA would not help with the depression. As James said, treating the OSA (even if temporarily) will help improve the depression and should give you more energy to help combat any weight issues.

Your bad experience with CPAP was not down to the NHS, possibly due to an inexperienced mask fitter, but please do not slam them for this.

AC
x

[tallishbloke]

Dear Billy

It is a shame that you had such a bad experience with CPAP. Success with CPAP takes perseverence skill and understanding from both sides - patient and treatment centre. It is undoubtendly more difficult to get a positive outcome when one starts off with a negative experience.
OSA is usually a progressive problem and I assume that your condition of OSAS (ostructive Sleep Apnoea Syndrome, which is having a certain level of airway events per hour together with daytime symptoms) was severe enough, otherwise your consultant would probably have suggested alternatives other than CPAP therapy.
Much of OSA is weight related, and as you probably say, yours sounds like it falls into this category. It is likely that you have had OSA for quite some time but your symptoms have only become more noticeable and more troubling in recent times. If you have had depression for 40 yrs and you have gained progressively more weight then you can of course lose it again, but it will take time. You have to ask yourself, what has changed to think that all of a sudden just because I have been diagnosed with OSA I can shed the pounds where I wasnt perhaps able to before.
Tablets are not always an answer, they may of course help, but not always. CPAP is also not guarenteed to sort out your life, not everyone can tolerate it. However. most are willing to give it at least a longer trial than one night. There are many types of machines out there, and many types of masks, it is a case of finding the right combination to suit the individual concerned. It is a shame that you choose to knock the NHS who provided you with a possible opportunity (free of charge to you, but expensive to the PCT) to get your life back on track, but you were unwilling to give it a chance.
CPAP when it is effective, helps with daytime symptoms, which in turn can help with symptoms of depression. This in your case could help with the comfort eating which in turn would help reduce weight. With feeling more alert and energetic, you would be able to do more exercise to burn of more fat, thereby also helping your weight. It is entirely feasible you could lose enough weight where symptoms of OSA no longer affect you.
However, it is a free country and I wish you good luck with your search for an alternative.

PS, please post your possible journey times in your car so rthat we can avoid the roads on those occasions. I have met people with OSA who swore blind they had absolutely no hassles driving from one end of the country to the other, and yet, ended up being requiring CPAP because they had an accident while falling asleep at the wheel.
TB

[joeandhelen]

One night and divorce???

I'm afraid your response to that one night on the CPAP may be a symptom of how you are with your mental state at present. You compare driving with drink or drugs with driving with untreated diagnosed OSP as a reasonable comparison. They do have one thing in common, they are all illegal. You are not allowed to drive with moderate to severe CPAP if you are not receiving a treatment that works. You are also not insured if you do not declare it to your insurance company having been accepted by the DVLA. What if you injure a child or worse kill one? The pain caused to the child and suffering to the parents would be horrendous and then to find you cannot offer them any financial recompense for the pain you have caused? Think about it.

I have a new CPAP machine. It is quiet as they should be. My nose mask cut the bridge of my nose causing bleeding. They gave me a nose pillow which does not touch the bridge of my nose, however, that causes me sinus pain. I am not giving up though, because I know this will offer me a better life. I recently underwent an operation on my spine which would offer me relief for 24hr chronic pain. That operation failed and there is nothing more they can do and believ me that is an awful feeling. I know I'll find an answer to this awful severe OSP. Most likely through finding the right CPAP machine/mask combination but if not with them there are other 'gadgets' that will help and even, as a last resort, surgery.

I have suffered with my excrutiating pain for 26 years and my poor wife has had to witness me having many resless and horrible nights, bless her. One night and your wife may threaten divorce? What about through 'sickness' and health. This all might sound harsh and unsympathetic but you are indeed cutting off the hand that feeds you and that is not the move of an intelligent person. I had one successful night on the CPAP until it cut my nose and this was followed by one of the best days of my life! Why? Because I felt awake and alive. My wife said it was lovely to have her 'real' lively and positive husband back.

So give up if you want to but include giving up driving in that. I don't want to see you in my court having killed someone due to your falling asleep at the wheel. You WILL go to prison!

Oh by the way I'm a magistrate and a psychologist.

Go on be a man and get your butt back to that sleep clinic with a list of questions and problems. You won't regret it!

Joe

[dravidio]

Hi Billy

I think I appreciate where you are coming from. I am guessing that you resent the diagnosis of sleep apnea and perhaps would have preferred not to have known. Your first bad experience of trying to sleep in a mask is not unusual - and then you begin to feel resentful and end up hating the thing. As Homer Simpson said to Bart when he failed to learn the electric guitar

"Son, if a thing is hard and takes practice - just give up."

There have been times when I have wanted to give up and blame the mask for feeling bad - but with advice, changing equipment, tweaks and perseverance I am now sleeping through and feeling the benefits.

I think your response was an angry one. Hope you re-consider and give it a try

[acebass]

Machine Compliance

Dear Billy, I have been using CPAP for 5 years now and wouldn't be without it, but I do understand our frustration, the first week I was in tears with it, trying to get the mask to not blow air in my eyes or leave red marks on my face. After about 2 weeks I had the mask adjusted and was getting the best sleep of my life.

I can go to the cinema without falling asleep in the middle of a film, i can attend meetings drive my kids to Trampolining and Judo Competeitions, and now I even teach Judo. It takes time to settle...incidently, my machine is an old sullivan S6 lightweight (that's a laugh) but it's whisper quiet, and was very useful as a cold air blower on holiday in spain (no aircon!!!), kids appreciated it anyway!!

Shame that you feel so strongly against it, it works for a lot of people, but, not everyone. You do have the right to a second opinion even of a consultant! get referred to another hospital.

I wish you well.