APAP or CPAP?

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Permalink Reply by paula jones on August 6, 2011 at 0:15

Awww thanks,Mary good reply,i will goggle them tabs u have mentioned,thanks, pre mask i was like close to collasping all the time i was that tired,life was hard,i couldnt do anything, 60times an hr apneas,results where shocking,once i held me breathe for 1min 30secs,id wake up with acid attacks choking on my own acid,they said i was mega servere and i defo can never go sleep without my mask,scared me rotton wot they told me!!

Now its different,im still tired and nodding everytime i stop ,if im kept occupied im ok,im distracted as soon as i stop and relax,im nodding,when i get to that stage i can no long move r do anything im so tired and that can be from approx 4pm onwards,but im tired within 5mins of waking up! ,i feel im better in ways and not in other ways,but proven with mask i dont have sleep apnea, ..i feel im fighting tiredness all the time!! even though mask is working!!
which upset me more cause i got diagnosed and thought mask would be a mircle cure,it is,but im still feel tired,iv been tired for long long yrs,always snored mega bad,but last 12months ,hubby noticed a change,it was him wot told me go docs as it seemed i wasnt breathing,he woke me up loads....im a positive person and im trying soooooooooo hard to stay happy and postive person, mentally coming to terms with everything is the hardest,but that goes for us all, we all in same boat really,thats why i love chatting to people on ere,and another site i joined b4 this,then realised id joined an American site hahahaha!!

some of my friends have tryed the mask on and they where blown away!! literally!! hahahaha!! Thanks for reply x x
Mary Zimlich said:

Paula, some of us never get over the daytime sleepiness.  I know that's different than being tired, but you've gotten good advice about diet and excercise.  Glad you've seen the doc to rule out other causes of feeling tired.  That's great having no apneas, you are on the right track.  Don't give up- it can be a long process to feel better.  Some of us are lucky and some take longer.  Are you just tired, no energy, or are you sleepy during the day, too?  There are wakefullness drugs- Provigil and Nuvugil-  not addictive and usually no speed like side effects.  If you do have side effects it's usually for just a few days.  Good luck, glad you're hanging in there.  It's worth it for the health benefits even if you don't get your energy back right away.

paula jones said:

im having none!! lol..none at all,no OSA..but im still tired so even though all looks gd on data we r still trying this out as on pressure 12 im at my best deepest sleep,so think they want to keep me on 12,to c if im more awake!!  If its my body catching up,Well in all seriousness surely i woulda by now??? ....

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Permalink Reply by paula jones on August 6, 2011 at 0:45

wowwwwwwww im goin docs on monday!! i want some Provigil, Mary if this works u will get the Biggest Cuddle u EVA Have had!! hehe,Thanks x x

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Permalink Reply by paula jones on August 6, 2011 at 21:19

I Love your knowledge!! seriously,these r things docs dont tell u,So am i better of asking for Nuvigil,?? rather than Provigil,im foneing 8am tomoz docs,lol...i wake up every morning with shakes,bad head and tired as,i have to lie there for 5mins then open my window for fresh air to feel better,takes me an hr to feel awake and normal then im still tired..and i promise thats only since iv had my mask!! Wots think of that?? before mask i woke up Brill,tired but brill,..if u get me, thank you so much, ohhhhhhh never had reflux since my mask,never had it b4 only at night,someone said i was fighting so hard to breathe acid would come up,i dont know if thats true but never had it during day r since mask,only at night only a few times,but it was bad when it happened...so well cured of that,lol,,yipppeee at least somets gone!! hehe...paula x x

Mary Zimlich said:

Paula, I misspelled Nuvigil - it's a longer acting version of Provigil.  Are you taking anything for your reflux? OTC drugs can be hghly effective. There are other drugs to help you stay awake, but these are two of the most common used for OSA.  You might need a Multiple Sleep Latency Test (MSLT).  This is where you take a nap for 20 minutes then stay awake for two hours, then another nap.  They do this about four times.  They can tell the difference between narcolepsy and hypersomnia by how soon you go into REM sleep.  It would be good to know which one you have.  I used to fall asleep on my feet within an hour of first getting up and couldn't drive because of the sleepiness.  I fell asleep in my therpist's office more than once. LOL.  Good Luck.

paula jones said:

wowwwwwwww im goin docs on monday!! i want some Provigil, Mary if this works u will get the Biggest Cuddle u EVA Have had!! hehe,Thanks x x

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Permalink Reply by Kath Hope on August 6, 2011 at 23:30

I will be really interested to hear how you get on at the doc's Paula.  It's rare to hear of Dr's in the UK prescribing

Provigil and Nuvigil.  Mary's in the US in case you hadn't noticed, and yes she's a great source of knowledge and we're glad to have her here :)

You do know about not eating within 3 hours of bedtime don't you, re the acid reflux?  Just thought I'd mention it in case you hadn't been told.

Some people feel better on straightforward CPAP (like Mary said) so it might be worth you trying that Sunday night to see if you wake up better on Mon.

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Permalink Reply by paula jones on August 7, 2011 at 0:27

ohhhhhhhhh No i didnt notice!! hahahaha! bet i dont get it, i will still try,might be another somet r other i can have..LOL..i dont get Acid now i have my mask! never have had only during my sleep apnea pre mask days at nite,totally gone now!

cant change it sunday nite,cause i need my nurse to talk me through doin it,shoulda done it fri,but didnt want cause i wouldnt of been able to change it back,leaving me stuck with it all wkend...

dont know wot to do now!! should i bother goin docs asking?? from wot u said im not get it, i will ask for the MSLT,like mary said,cause i could have one of them two,Narcolepsy r Hypersomnia!! worth getting checked,all i know is im not living life as i should cause of me being tired all the time and for that id try anything!! i will fone nurse on monday morn and get my machine checked from Apap to Cpap, still gonna go docs and ask if theres anything i can have!!

Thanks for telling me though didnt realise!! im a dafty!! :)

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Permalink Reply by Kath Hope on August 7, 2011 at 0:42

Great to hear the acid is cured since the OSA treatment :)  Just need the tiredness cured now, and believe me it didn't happen for me for a good while, + also lots of customers tell me it was the same for them, as lots of sleep debt needs paying back first..... years and years of undiagnosed OSA takes it's toll on our sleep deprived bodies.

If it were me, I would try straight CPAP first in case you're one of the few who's body prefers this, as opposed to APAP.  You can then pay the doc a visit if this fails.  I'm still intrigued to hear whether you'd have got the Provigil ;)

You're not a dafty..... just a sleep-deprived person desperate for help.  It's still early days though and at least you've had a diagnosis, unlike a lot of poor people who are struggling on with extreme exhaustion and other issues, not even aware that they have sleep apnoea!
paula jones said:

ohhhhhhhhh No i didnt notice!! hahahaha! bet i dont get it, i will still try,might be another somet r other i can have..LOL..i dont get Acid now i have my mask! never have had only during my sleep apnea pre mask days at nite,totally gone now!

cant change it sunday nite,cause i need my nurse to talk me through doin it,shoulda done it fri,but didnt want cause i wouldnt of been able to change it back,leaving me stuck with it all wkend...

dont know wot to do now!! should i bother goin docs asking?? from wot u said im not get it, i will ask for the MSLT,like mary said,cause i could have one of them two,Narcolepsy r Hypersomnia!! worth getting checked,all i know is im not living life as i should cause of me being tired all the time and for that id try anything!! i will fone nurse on monday morn and get my machine checked from Apap to Cpap, still gonna go docs and ask if theres anything i can have!!

Thanks for telling me though didnt realise!! im a dafty!! :)

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Permalink Reply by RockRpsgt on August 7, 2011 at 2:56

I don't know where this Mary Z lady is coming from. She acts like she has a bunch of experience with this sort of thing or something. LOL ;)

 

I am glad you're here Mary! How is your treatment going. I am still baffled over our last conversation when you told me you didn't have desats. That compiled with your last PSG report saying you had 0 events @ 8/4 makes me think UARS. Then again a doc I ain't.

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Permalink Reply by paula jones on August 7, 2011 at 16:54

Yeh will do that!! lol...explain and let doc give me something accordingly,Brill we have a plan..hehehe,

Awww u have been through so much and still goin through it,All we can do is stay strong and postive through out our Trails,all i know is u have helped me loads with your advice and careing words,and i wish u peace,and if u ever need words of comfort,message me! i have enough for us both, i do look around me ,And i  do thank God for all i have and my Life,Family and Friends!! i feel Blessed, Tired but Blessed...I Wish u Peace and Great Things in Life x x x

Mary Zimlich said:

Paula, you could just tell your doc that a friend in the US takes Nuvigil, tell him/her your symptoms and let them decide what, if any medicine you should take.  The meds don't give you energy (unfortunately), but help you stay awake during the day.  If you wake up tired they won't help that.

I don't have a lot of experience, just 3 1/2 years, but because of meds I take It's been hard to get an AHI below five. (I also used to do nursing before going on disability).  I've had a lot of sleep tests and doctors visits.  Unfortunately that great night in the lab when my apnea was controlled at 4/8 has yet to be repeated.  I changed the setting to eight, straight CPAP because the pressure changes bothered me.  If I increase the pressure my apnea actually gets worse.  It took me a long time to come around to my doctor's opinion that my meds are responsible for my poor AHI.  I kept thinking they wouldn't cause respiratory depression.  Then Rock explained to me that they just might  mess with my sleep archtecture.  We also don't know the effects my comorbidities play in keeping my AHI high- I am Bipolar and have a deep brain stimulator implanted for essential tremor, plus have chronic leg and back pain (I'm a mess-LOL)  I am far from your normal OSA patient.

It takes me a while in the morning to get my balance and coordination in shape.  That first cup of coffee is a necessity.

Good luck on the phone with the doctor.  Sometimes I think we are better off just explaining our symptoms, and stressing that the symptoms are unbearable and affect your life terribly and asking for some medicine for relief ,than asking for a specific med.  Good luck, Paula.  Keep us posted on what happens.

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Permalink Reply by Carolyn Tipping on August 13, 2011 at 0:34

I have had a cpap, an auto cpap and now I have a B-pap auto. It is very good. All were provided by the Nhs over the past few months. Obviously the cpap and the auto were returned to the hospital, now I have this amazing Bi-Pap machine. Lucky or What?

Katrina Wray said:

CPAP - NHS doesn't offer anything else unfortunately!

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Permalink Reply by Kath Hope on August 13, 2011 at 0:40

Sounds like you are being very well treated Carolyn, and by the way "welcome to the forum."  Would you mind sharing why they gave you B-Pap in the end?

Carolyn Tipping said:

I have had a cpap, an auto cpap and now I have a B-pap auto. It is very good. All were provided by the Nhs over the past few months. Obviously the cpap and the auto were returned to the hospital, now I have this amazing Bi-Pap machine. Lucky or What?

Katrina Wray said:

CPAP - NHS doesn't offer anything else unfortunately!

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Permalink Reply by paula jones on August 13, 2011 at 0:43

Bpap?? iv just learnt wot apap and cpap is and the difference,now theres a bi-pap,lol..how many more?? reet im off to goggle Bi-pap..lol...

Kath..Tryed the cpap set on 12,did two days didnt make any difference,went docs and mentioned the tabs,but he looked at my notes and back in dec i was borderline Anemic,so im hopefull its that,so i can be treated and feel better, i really want this to be it,sick of tests and feeling tired and drained!!

  Carolyn from wot others have said on ere,i feel lucky as well,iv got everything from NHS,a good Sleep apnea clinic with lots of help and support, Everyone should get good help, x x x

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Permalink Reply by paula jones on August 13, 2011 at 0:45

ohh Carolyn have u just joined? its a good site,i love it, Welcome x x

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