wanna stop using cpap

[jasonuk75]

Hi everyone,
i;m aving awfull probs with cpap, im ready to quit using it but know i cant which is really really annoying me, dx with osa, 130ahi a hour end of dec last year, had a auto coap for a week to get pressure right i felt great,
then went on fixed rate nhs wont give auto cant afford to buy one or would of, straight away on fixed pressure felt not so good its been getting worse im at breaking point
spoke to been to sleep clinic many times they are understanding and have tried varied measures to make cpap more comftable but it aint working main probs i;m aving are
1, really dried out throat, constantly thirsty no amount of fluids is quenching my thirst, tried humidifier it dident work so that went back,
2 my eds is getting a lot worst i;m scoring 20 on epsworth sleep study that aint good
i dont get it i'm sleeping 8 hours a night but feeling awfull im using cpap everynight
i;m aving a sleep study at home on mon, this time a clip on ear, cos my oxygen sats r low, could this make me tired??? if oxygen is still low told may need a diffrent machene,, i just wanna feel better feeling this rough is no life at all quality of life is nil
Jason

[Tigers Fan]

Moral support

Hi jasonuk75

I'm truly sorry to read of your plight and the way you feel about life and CPAP. All I can offer is moral support and the wish that your sleep clinic can discover what is wrong.

Sudden thought - in case you need BiPAP or VPAP or some other therapy, have you tried talking to James. I know Intus do a sleep study.

All the best

TF

[ElleCee]

Hi Jason,
I know we both started this venture at the same time and I have had a lot of problems too.
I was told at one study that I needed Bipap but they have sonce changed their mind. My setting now is at 7 increasing to 15 after 15 mins of ramp time.
I sleep through now but I am still so very tired all the time. I go to bed at about 7pm and get up in the morning at about 6:30am, even with over 12 hours sleep I am still yawning all day.
I have decided that maybe I am getting too much sleep so have booked next week off work and am going to try limiting my sleep to 7 hours for a few days and see if that makes any difference. I know that too much sleep is as bad as too little.
I dont want to give up on cpap because at least I dont keep waking up in the night to use the loo every 45 mins and I am sure that my heart will benefit from it.
I have to see the cardiologist in a couple of weeks to see if OSA has caused any permanent damage.
So, what I mean to say is, dont give up, it is still early days and we can do it.
It will make a difference once these teething problems are sorted out.
Hang on in there!
Take care
Lorraine

[bassetman]

HI Jasonuk75, Sorry to read of your frustration etc, I can only say ,I've been there !!(a lot have at some point) I myself was diagnosed May 2008 things were great till about 6 months ago,ess of 22 HAD to stop driving been of work (HGV driver),for a month,had sleep study,changed cpap 9.8 to 12.8(my optimum setting) still don't feel right.so i've been told by my consultant physician/sleep clinic I will need to take modafinil,all I can say is GOOD LUCK & DON'T GIVE UP !!! I'm sure it will get sorted!

[Tricia]

More moral support coming your way.
Don't give up hope.

[jasonuk75]

thanks for replys

ty everyone for ur support i feel i soo need encouragment at moment!!!
my heads been like a washing machene spinning and spinning!!! aving this home sleep study mon to see if oxygen sats are low if so will prob av a bi pap from NHS, ive been so frastrated first week on auto machene i felt fantastic, since going on fixed rate been feeling worst over last 8 weeks, but as ive said NHS will not give me a auto, my gp had written to consultant last week asking i have one on basis auto worked well for me, but in meantime gotto av this sleep study so may get bi- pap !!!!!!!!!!!!!!!
also dont know if this was wise--- read nice guidlines on CPAP treatment for sleep apnea it said type of machene issuied as in auto or fixed rate depends on persons requments and effective treatment should be issuied, so nhs saying cant av auto due to cost seems rubbish, course this is great on paper, got gp on side saying i need a auto so getting mad at sleep clinic nhs, want to quote these guliines to them but dont wanna cause tension cos sleep clinic has been great in every other way
cos im feeling so rotten im furious to think NHS are not following wot they are expected too by nice guidlines but we dont live in a perfect world do we !!!
to make matters worst i av 2 other chronic illnesses
chronic pancreatitus-- have to take morphine daily for pain
unstable bladder- caused by pancreatitus which mean i dont have 100% control of my bladder, have to wear a catherder to bed with drainage bag and during day so top end of body got CPAP bottom end got catherder and bag grrrrrrrrrrrrrrrrr do i take NHS on on basis seems wot they are doing is wrong? dont think got energy to do that or do i just accept they wont budge on giving me a auto? course depending in sleep stusy on monday id get bi-pap auto is out then anyway

slept for 8 hours flat last night dident wake up once, dont av energy to even tie my own shoe laces today
Jason

[OldCrow]

Keep battling, I know how you feel.

Like yourself I keep thinking - "This is supposed to be doing me good?? Morelike doing my head in! Leaks are my problem, I've only got to move and....
But...I'm a persistant so and so.....It's a bloody machine, it's not getting the better of me! Apart from the whole fetish/inquisition experience, what exactly are the aspects that you need advice with? I'm trying all sorts of ways of blocking off the annoying leaks - not got there but I mean to and I'm going to be in control, not the device. Also I'm going to seize on each and every positive experience and try and repeat the effect. I've only had my kit just over three weeks and I reckon it's just gonna take time until I find the best solution for me, certainly not got there yet; it's a struggle and I cannot yet say I'm rejuvinated and full of pep in a morning - more like I've been to war! Just keep at it and try and find something that you think it actually does help with. Keep battling, many of us are in the same boat and still bailing. Best regards. Mick

[Alleycat]

HI Jason
sorry to hear you are still having ongoing problems. Hope they sort you out after your study on Monday. If they end up having to give you a BiPap it will cost them a lot more than an auto! They may wish they'd just given you the auto in the first place! On the dry mouth issue it could be that you are still opening your mouth at night (particularly if the CPAP is not treating you effectively). A humidifier should usually help but otherwise a chin strap may also be of benefit.
Good luck, let us know how you get on/
AC
xxx

[davejwhite]

Hi Jason - how are you doing?

I was interested to read your story. Has anyone looked at the use of morphine with CPAP? Reason for asking is that morphine suppresses respiration, and I wonder if it is interfering.

Just a thought. Talk to your medical professionals.

[jasonuk75]

re morphine

Hi Dave ty for ur post,
i must say first cpap has become a lot mopre comftable, been diognosed as diabetic in last few weeks so that was partly making me feel soo ill, still very tired though
with regards to morphine, when i was diognosed with sleep apnea 4 months ago 130 apneas a hour consultant said to me morphine u take aint going to help sleep apnea as u rightly said due to respetiary setup, he said id have to either stop or reduce taking morphine i take i agreed
MST 30mg am and pm- prolonged release morphine- works for 12 hours each 30mg
OROMORPH-10MG-5ml - liqiud morphine immediate release, 2 to 4 hourly for brealthrough pain, max 60mg- 6 doses in 24 hour period
spoke to gp went onto to reduce morphine OMG pain of chronic pancreatitus put me in hospital, so just my luck in between rock and hard place!! pain chronic pancreatitus cause is chronic intractable pain meaning it causes changes is body blood pressure and a lot more,, the more pain i;m in the more inflamed pancreas gets leaving me open to shock and organ falure, pain comes from digestive enzymes activated early so they eat my pancreas alive hence pain inflamation- these enzymes should only become active in intestines where there do no harm, so my pancreas is always under attack, drs say the only pain that is worst then pancreatitus pain is bone cancer, hence my morphine dosage daily
i totally agree morphine wont help sleep apneaid so like to not have to take it, waiting to see drs at pain clinic to see wot they can suggest
been on morphine at hmoe for 3 years before morphine at home, would be rushed to hospital to have pain controlled with morphine, at least now can get it controlled at home, know u dident ask all the above lol fingers got carried away
Jason

[davejwhite]

Wow, Jason, that makes my story look like a picnic!

Will continue to think of you in your 'journey'

[joeandhelen]

HI Jason,
You are going through the wars. Like yourself I am on a cocktail of pain-killing meds which varies up to Morhpine and similar and indeed medications do affect your abitlity to feel fully awake during the day. This really complicates things for your OSA team. I also have a spinal implant stimulator which shakes me a bit and also some loss of bladder control so I'm up and about all night. I've just been diagnosed with RLS (Restless Leg Syndrome).

I hope this helps you realise I do understand some of what you are going through. You obviously have a massive inner strength tho I bet that can often leave you but yet we fight back. Keep going my man and don't lose that humour that for me is the greatest personality feature we retain.

One important note to the lady(Sorry I forgot your name) who goes to bed at 7ish and sleeps through for 12 hours yet still feels tired. You will!!! Sleeping too much is as bad as lack of sleep. The secret is to stay up later and get up at the same time each morning (Always get up at the same time apart from the odd lie-in!).

Keep going J my boy!
Others would have packed it in long ago!

Joe

[davejwhite]

Hi Jason

Sorry I didn't reply earlier - been away for the weekend.


You have so much more to contend with than I do, and I admire your courage. When there are so many overlapping factors, it must be hard to sort out what is good and what isn't! I'll certainly be thinking of you in the future. keep in touch and let us know how you are doing.

I've been graphing my results, and have noticed that although my daily figures are up and down, the weekly and monthly averages show a steady trend downwards with the Apnoea rates - even despite the leaks! So it is working - sometimes even though I think it isn't. Hope yours is the same.

[mountain]

buy a humidifier for ur cpap to solve the dry throat when using cpap.
You feel tired is because of the sleep apnoea,in 8hrs sleeping,only half even 1/8 is really deep sleep.Feeling tired in daylight is terrible,especially tired when driving... concern more about you and ur family,get used to the cpap.