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Two months compliant, still exhausted..
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Gabby Offline

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Post: #1
Two months compliant, still exhausted..
For the past two months I have been totally loyal to my mask and machine, never once napping or sleeping without.
I am getting great AHI results, most well under 2.
Another great result is, instead of getting up to visit toilet 4,5 and sometimes 6 times a night I now mostly only go once. I am overjoyed about this turnaround.

My main concern is I am still exhausted in the day time. I wake up yawning and tired and it continues like this all day. If I let myself I could easily crawl back in to bed by 10am but I make myself stay up until at least lunch before I go and have a two hour nap (with machine).
Then I am asleep straight after dinner at night again.

I have had blood tests done so their are no underlining problems.
The only other thing I am able to think of is maybe one of my medications I take for my migraines. My Doctor has assured me they should not make me this sleepy, but he can't offer me any other solution.

I just want to ask has anyone tried Modafinil/Provigil to help them stay awake during the day?

I will be going to see my sleep Doctor on the 10th of May, so hopefully they will have some answers for me because I am finding this very distressing. I thought my tiredness was going to go once I started using cpap but it seems to have got worse.

Sleep Tight...
Gabby
04-07-2014 05:16 PM
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retired_guy Offline

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Post: #2
RE: Two months compliant, still exhausted..
(04-07-2014 05:16 PM)Gabby Wrote:  For the past two months I have been totally loyal to my mask and machine, never once napping or sleeping without.
I am getting great AHI results, most well under 2.
Another great result is, instead of getting up to visit toilet 4,5 and sometimes 6 times a night I now mostly only go once. I am overjoyed about this turnaround.

My main concern is I am still exhausted in the day time. I wake up yawning and tired and it continues like this all day. If I let myself I could easily crawl back in to bed by 10am but I make myself stay up until at least lunch before I go and have a two hour nap (with machine).
Then I am asleep straight after dinner at night again.

I have had blood tests done so their are no underlining problems.
The only other thing I am able to think of is maybe one of my medications I take for my migraines. My Doctor has assured me they should not make me this sleepy, but he can't offer me any other solution.

I just want to ask has anyone tried Modafinil/Provigil to help them stay awake during the day?

I will be going to see my sleep Doctor on the 10th of May, so hopefully they will have some answers for me because I am finding this very distressing. I thought my tiredness was going to go once I started using cpap but it seems to have got worse.

I have been experiencing pretty much what you describe Gabby, and I thought about it a lot. Here's what I thunked up:

My "yawn" machine works very, very well now. It used to not work hardly at all. The difference I think is that overall my body is much more relaxed than it ever was before. Before I was functioning without any meaningful sleep, so I could actually fall asleep while talking with someone, or driving the car, or watching a program on tv, or typing a response to someone on a web site... And I did all of those things and none of those things actually resulted in me being a relaxed sort of a guy. Now, I don't really do those things anymore. I could take a nap most everyday but normally I don't because I don't really want to do that. I can actually drive to the post office without the cows in the field alongside the road having to run and hide. I can watch a tv show...... Well, that's not necessarily a plus. ...and I don't usually fall asleep when my wife is talking to me. That's a very good thing.

But I could say, based on the fact that I'm yawning all the time, that I'm exhausted. I'm really not. I'm just enjoying being chilled out.
04-07-2014 05:46 PM
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justMongo Offline

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Post: #3
RE: Two months compliant, still exhausted..
Gabby -- no other underlying health conditions: Weight, diabetes, high blood pressure... ?
Often OSA is clustered with other conditions. Treating OSA helps with the sleep component; and can have a positive effect on other conditions.

Have you been screened for depression?

You don't have to answer those questions.. I'm just throwing them out for you to consider.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
04-07-2014 05:53 PM
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robysue Online
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Post: #4
RE: Two months compliant, still exhausted..
Gabby,

Some of us simply take longer to start noticing any difference after we start using CPAP. It took me 4-5 months before I could say anything remotely positive about PAPing. And the first thing that I noticed? Waking up without hand and foot pain. It took another couple of months before my depleted energy levels started to bounce back to my pre-CPAP levels. And yes, I remember how frustrating it is to hear: Just give it more time ....

Things that I noticed in what you wrote:
(04-07-2014 05:16 PM)Gabby Wrote:  Another great result is, instead of getting up to visit toilet 4,5 and sometimes 6 times a night I now mostly only go once. I am overjoyed about this turnaround.
Hang on to that positive as tight as you can and celebrate it.

But note: If you were getting up 4-6 times to pee every night pre-CPAP, that could indicate that your body has a long way to go to fully heal from the effects of years of untreated OSA. So give it more time for the "how do I feel?" question.

Some people say that they believe they had to pay off a "sleep debt"---in other words starting CPAP made them start craving sleep because for the first time in years, the sleep felt good, but they were still sleepy all the time for two or three months.

Quote:The only other thing I am able to think of is maybe one of my medications I take for my migraines. My Doctor has assured me they should not make me this sleepy, but he can't offer me any other solution.
There are a lot of things that can be used to treat migraines. Some of them are known to cause sleep problems.

As another migraine sufferer, I can tell you that starting CPAP triggered a pretty serious uptick in my nighttime migraines----sensory overstimulation is a migraine trigger for me, and in the initial going, the sensory stimuli coming from the machine overwhelmed me. And it wasn't until my migraines were brought well under control that I started to feel somewhat better with PAP than I had felt without PAP.

So: What meds have got you on for the migraines? And how well do they control the migraine headaches?

Quote:I just want to ask has anyone tried Modafinil/Provigil to help them stay awake during the day?
These are sometimes prescribed to PAPers who continue to have severe problems with excessive daytime sleepiness in spite of 100% compliance with PAP therapy with good data from the PAP machine.

How effective are they? That really seems to vary from person to person. And a few folks find the side effects more troublesome than the daytime sleepiness.

Quote:I will be going to see my sleep Doctor on the 10th of May, so hopefully they will have some answers for me because I am finding this very distressing. I thought my tiredness was going to go once I started using cpap but it seems to have got worse.
I would suggest that you call the sleep doctor's office NOW and politely, but firmly tell the receptionist that you need to have a call back from the doc or a nurse or a PA to talk about the fact that you are still experiencing serious problems with daytime sleepiness in spite of 100% compliance with PAP therapy. They may be able to squeeze you in for an appointment earlier than your May 10 appointment.
04-07-2014 09:32 PM
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herbm Offline

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Post: #5
RE: Two months compliant, still exhausted..
Sorry you aren't feeling as wonderful yet as your new better quality sleep might cause anyone to expect.

This seems to be a fairly common situation -- some people go months, some even longer, getting effective treatment BEFORE they feel markedly better.

Do look into the situation with your doc at the earliest opportunity, and do enjoy that you get to sleep mostly through the night (I too was getting up 2-6 times each night but almost now it is almost always just once.)

Also, give yourself a pat on the back that whether you FEEL it or not yet, you are getting the effective therapy to being to reverse the effects of low quality sleep and apnea on your mind and organs.

Your heart thanks you. Your liver thanks you. Your brain will catch up pretty soon.

Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
04-08-2014 12:45 AM
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Gabby Offline

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CPAP Software: SleepyHead

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Sex: Female
Location: Sunshine Coast, Qld., Australia.

Post: #6
RE: Two months compliant, still exhausted..
Thank you retired_guy, justMongo, robysue and herb for taking the time to answer me.

I am about ten kilos overweight and I do suffer high blood pressure for which I take medication. I have no problems with diabetes.
I suffer from depression, I take medication for that.
Since I have written my post I have spoken to my general Doctor again and he seems to think two of my migraine medications and another med. I am on would probably all combine to make me extremely sleepy.
He thinks it is a trade off I have to be willing to take.
I tend to agree with him. I have tried to come off or cut down on these meds and when I do so my headaches have gone through the roof. So if I have to choose between chronic daily headaches again or excessive daytime sleepiness, I think I will have to go with the sleepiness.
I rang the sleep specialist and unfortunately they are unable to bring my appointment forward. That is ok. It is the 5th of May, not the 10th like I thought.
I will see if they are able to offer any alternatives. If not, I will just have to try to work something out for myself.

For now thank you all once again for your help and I will continue tonight to try and stop the leaks on Airfit P10. Last night they were 25.8!i sewed the straps tighter today, so hoping for a better result tonight.

Sleep Tight...
Gabby
04-09-2014 10:45 PM
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herbm Offline

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Post: #7
RE: Two months compliant, still exhausted..
If the tightening of the straps doesn't help, then do consider trying ALL of the pillow sizes.

The one you "think" feels best may not be the best fit. I seem to remember you are ordering a large pillow (since you bought a "for her P10" and got the xsmall, small, and medium.)

I DOUBT you need the large, but do try each of them.

Presumably that leak is your 95% which isn't completely terrible but it really should be nowhere near that high.

Sleep well tonight and I hope you feel SOME better tomorrow....

Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
04-09-2014 11:00 PM
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Gabby Offline

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Sex: Female
Location: Sunshine Coast, Qld., Australia.

Post: #8
RE: Two months compliant, still exhausted..
(04-09-2014 11:00 PM)herbm Wrote:  If the tightening of the straps doesn't help, then do consider trying ALL of the pillow sizes.

The one you "think" feels best may not be the best fit. I seem to remember you are ordering a large pillow (since you bought a "for her P10" and got the xsmall, small, and medium.)

I DOUBT you need the large, but do try each of them.

Presumably that leak is your 95% which isn't completely terrible but it really should be nowhere near that high.

Sleep well tonight and I hope you feel SOME better tomorrow....

Thanks Herb, I have been using the medium pillow as I feel the small is just not big enough. Not sure what happened last night. Early hours this morning I just couldn't get mask connected to nose.
Other nights leaks have been around 12's.
I am feeling quietly confident about tightened straps tonight.
Thanks again for your continued encouragement.

Sleep Tight...
Gabby
04-10-2014 03:18 AM
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JohnNJ Offline

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Post: #9
RE: Two months compliant, still exhausted..
Gabby:

The number of hours that I sleep makes a difference for me. Even though the quality of sleep is better for me with the machine, I feel tired in the morning if I don't get enough time sleeping. You may want to try going to sleep earlier and see if that makes a difference.

Good luck.
04-10-2014 01:26 PM
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Marnid2014 Offline

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Post: #10
RE: Two months compliant, still exhausted..
I hope you feel better Gabby. Hugs. I am struggling with the P10 mask and want to make it work, just as you do. I still feel tired as well, even though I am sleeping about 8 hours or more. I still get up a few times for the bio break, and I wish I could stop that, but I have really bad leg cramps and if I don't hydrate, they strike with a vengeance at night. It's a mixed bag, not much choice. With my sleep position off from my usual, due to the pacemaker install and still healing, I am all messed up, so I am sure with your medical issues as well, you are too. hang in there, everyone is so wonderful here. I would be lost without them all.
04-10-2014 03:27 PM
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