On CPAP and Still Tired?

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Permalink Reply by Andy Thomas on March 13, 2011 at 12:57

Having looked through the list it is easy to see how your body can be under attack from other illnesses.

I have also been diagnosed with Bi Polar Disorder so I know only too well how other conditions can have an adverse effect on your treatment.

I would agree with the report and have had a full blood screen done recently at my Gp's request to see if everything is ok as there are times when although I am being 100% compliant i still feel exhausted.

But  i would add that I have not looked back since starting the therapy and would urge you all to not, never give up even on the nights when u cant get comfy, your mask is  trying to suck your face off, in time it will become your best friend and make you feel better than you have ever been.

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Permalink Reply by Kath Hope on March 13, 2011 at 13:13

It's not surprising that a lot of people have periods of depression etc. Andy with severe sleep deprivation.  Even people without sleep apnoea get crabby/irritable if they're tired.  Are you able to check your results from the machine.  If not, it would be beneficial to get a pulse oximeter to see if you're treatment's going well.  Have a look at what John's been saying on here.

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Permalink Reply by Andy Thomas on March 13, 2011 at 19:15

Hi kath

I cant get any results from my machine as I am unfortunately using the Resmed S8 escape which does not have a data card in it, I have managed to get the software to read the data cards but a card reader and the cards are almost non excistant in the UK and the NHS frown on you downloading the data yourself.

Mind you with mike in the states hint hint maybe he can point me in the right direction to source these from a supplier state side who is prepared to ship over here, as I have contacted a few companies but they will not entertain sending these to patients in the UK.

And I have asked my sleep clinic if they can upgrade my machine to the S9 which uses an SD type card for diagnostics but they just laughed, so my quest continues.

 

 

 

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Permalink Reply by Graeme Joy on July 4, 2011 at 15:52

Only signed in a few days ago and have been looking through the forum and don't feel quite so alone, some of the stories are very sad and being selfish, as most of us are, they made ME feel better.

Trying to find info on two areas now, “To Drive or Not To Drive, That is the Question” and “What do those *&^*&^$?:> numbers mean?

Seen Andy Thomas's piece on the DVLA and will post there later.

From here I would ask about those all important numbers.

I have a NHS Respironics REMStar Auto A-Flex, M Series with the purpose built humidifier attached with a Resmed Mirage Quattro Full Mask.

The REMStar has a card for storing data in a rear slot and a flip screen touch pad on the top of the machine.

Can't do a lot about the stored data on the card but can cycle through the LCD screen but not change anything.

The numbers currently set on my machine are,
Screen 1                                7        7.00 h                        30                     4.42 h
Screen 2        >4                    7        7                                30                     5
Screen 3      90% cmh2o       7      15.9 cmh2o                 30                    15.5 cmh2o
Screen 4      C-Flex – X (Off I think)
Screen 5      FOSQ and buttons to increase this number using up and down keys.

Any ideas, I have asked the sleep clinic but on the last visit was simply told my mask was leaking and I was given a new one? Searched the inter-web but no manuals for the REMStar unit adjustments.

Looking through the forum, I have ordered a oximeter thingeee from e-bay to try to measure what's happening to me.

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Permalink Reply by Tigers Fan on July 4, 2011 at 19:07

Hi Graeme

 

The oximeter is trying to run before you can walk! When you understand what your APAP is telling you and you have settled to using it and your mask - then time for the oximeter for fine tuning. If you can't adjust your machine yourself - or don't want to - all this is acedemic, anyway.

 

Screen 1 is avarage usage. Everythingh on the 'M'Series is over 7 and 30 days.

2 is days you used less than 4 hours (the compliance required by DVLA - so you are not lawfully alloweed to drive right now).

3 is your 90% pressure a crucial number and your homework for tonight.

4 C-Flex or A-Flex is exhalation relief - you should have it on, at least for a trial while you get used to APAP.

5 is a questionaire which I have never used - aimed at Americans, I think.

 

You sound like a practical man so the decision is between relying on your clinic to set you up and fine tune your rig (are they helpful or not) and DIY. DIY means educating yourself so you can know whether on line advice is good or bad. I'm a dedicated DIYer.

 

Here's some good - the American retail sites nearly all have links to how to adjust your machine.

 

By the by, the real stats are on the smart card and are expensive to get at.

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Permalink Reply by paula jones on July 4, 2011 at 23:16

iv not a clue but all them facts and figures!! i just let the hospital sort it,i take my memory card out of machine and they sort it, they check my do-da's ...far to complex for me!! lol..all i need to know is am i breathing?? hahahaha!! they said im doin great...go bk in 4wks and they can check again...keep it simple!! thats my way!! haha  x x x

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Permalink Reply by Kath Hope on July 4, 2011 at 23:19

You are very lucky to have such good care Paula, with a hospital that checks the memory card from the machine.  Not everyone is so lucky, hence the fact they get involved in their own facts and figures :)

paula jones said:

iv not a clue but all them facts and figures!! i just let the hospital sort it,i take my memory card out of machine and they sort it, they check my do-da's ...far to complex for me!! lol..all i need to know is am i breathing?? hahahaha!! they said im doin great...go bk in 4wks and they can check again...keep it simple!! thats my way!! haha  x x x

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Permalink Reply by paula jones on July 5, 2011 at 0:01

Awwww, yeh true, i do feel lucky now u said that! its through the NHS hospital in wigan Lancs,they r very nice and they said they might start a group where we meet once a mth r somet,so i'll go to that as well...hope u all get sorted and get good specalists x x

Kath Hope said:

You are very lucky to have such good care Paula, with a hospital that checks the memory card from the machine.  Not everyone is so lucky, hence the fact they get involved in their own facts and figures :)

paula jones said:

iv not a clue but all them facts and figures!! i just let the hospital sort it,i take my memory card out of machine and they sort it, they check my do-da's ...far to complex for me!! lol..all i need to know is am i breathing?? hahahaha!! they said im doin great...go bk in 4wks and they can check again...keep it simple!! thats my way!! haha  x x x

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Permalink Reply by Graeme Joy on July 5, 2011 at 9:14

Thanks for all the replies, its weird going from no help to “instant answers” from not only people in the same boat, but they actually know what they are talking about.

 

Brilliant answer Mr Tigers Fan. Explaining the numbers so that I could see what they meant and slowed me down from the “Fix it now” reaction which is my normal response to any sort of problem. This OSA may need a bit more “think before you act”.

 

It does mean that I can actually ask some reasonable questions at the sleep clinic and begin to understand their answers, and plan with them a routine and settings that will help me in the long term.

 

Although I am a bit confused as to the average hours used over the 7 and 30 day periods being shown as only 5 hours. I use the machine every night all night (say 7 hours as I do not stay in bed when I wake up). Again something to ask the clinic at the end of the month.

 

Again, and to all of you “Thank you for being my friend …......”

 

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Permalink Reply by Tigers Fan on July 5, 2011 at 11:08

Have you discovered what 90% pressures are, Graeme - and why it's so important to know what yours is?

 

I'm trying to get my head around Paula's method and attitude! I think I wish I could do it - to trust strangers in or out of uniform to set me up with as much detail and attention as I give my own therapy. Is being able to trust that easily/much akin to being able to love that easily/much? I have to feel my way into trust and love very slowly and carefully.

 

Regarding CPAP, Kath is absolutely right - DIY is needs must here in Southampton. Lovely people, just the clinic isn't set up that way.

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Permalink Reply by Tigers Fan on July 5, 2011 at 11:59

Forgot to say, Graeme - the M Series records total usage per session but subtracts 'large leakage' time. On the Smart Card, usage is shown as a horizontal green bar with large leakage time blacked out and not counted as therapy time. So you may wear your mask for eight hours but only record three and a half hours therapy.

 

This is where 90% pressures come into the picture.

 

TF

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Permalink Reply by paula jones on July 5, 2011 at 14:29

LOL...im a newbie and it seriously goes ova my head!! so iv no chioce really,dont even know how to get the info out of that card and onto my comp,and if i did,i wouldnt have a clue wot it all ment,i mean unless your told/taught u wouldnt know,had mask 4wks and first wk was nightmare,2nd wk didnt wear it,3rd wk tryed again and was ok,4 wk im good!! which is now! still tired though, lots of u have said iv got good care,so iv no reason not to trust,hahaha Graeme u can tell me when u have sused it!! hehe..good luck x x

Tigers Fan said:

Have you discovered what 90% pressures are, Graeme - and why it's so important to know what yours is?

 

I'm trying to get my head around Paula's method and attitude! I think I wish I could do it - to trust strangers in or out of uniform to set me up with as much detail and attention as I give my own therapy. Is being able to trust that easily/much akin to being able to love that easily/much? I have to feel my way into trust and love very slowly and carefully.

 

Regarding CPAP, Kath is absolutely right - DIY is needs must here in Southampton. Lovely people, just the clinic isn't set up that way.

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