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FRUSTRATED: Still tired after 131 days of CPAP
Hi jhellwig,
WELCOME! to the forum.!
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Hi rwin,
I'm entering my 3rd month and also been experiencing tiredness when I wake up due to frequent awakenings throughout the night. I think I might of had 2 maybe 3 really good nights of sleep where I've woken feeling refreshed; so I know I'm capable. My issue is that I'm a side sleeper and frequently toss from side to side trying to get comfortable but when I do this, I feel the mask or the hose pulling which wakes me up. Also for some odd reason I have no leaks when I sleep on my right but when I switch to my left, the mask starts to leak, which again wakes me up.
I agree with what eviltim states that poor quality of sleep can have the same effects of Apnea from being consistently tired but Apnea is worse from the simple fact that you body is being deprived oxygen while you sleep; for this reason only is why I continue to try and make this work. As some have mentioned you need to figure out what is waking you up through the night, is it equipment or body?!? For me (right now) I think it equipment. As much as I like the nasal mask that I'm currently using, I'm going to try a nasal pillow style to see how it fits my face/head structure to see if the current problems disappear. As for body issues, I've had times where I just can't fall a sleep even though I'm very tired and would pass out sitting on the couch watching tv, but damn if I could fall back to sleep when I hit the bed. I refuse to take sleeping pills as I don't trust the chemicals the medical mafia trys to push on us with out consequence and accountability but they can reap billions of $$$ in profits. I do use a natural herbal product called Valerian Root which I was told Vallium is synthesized from this plant. I find that this actually calms me down enough for me to fall asleep.
At the end of the day, there is no magic pill to make this all better but I know it's important to somehow make it work especially after I read an article stating that Apnea left untreated could shorten a persons life by twenty years and that's huge, especially when you have children. I'm fortunate that I have a provider that is very helpfull and will let me try different masks if I need to and this website and people on this forum are amazing with the information and sharing of their personal experiences, that the amounts of information I acquire also provides me with a level of hope that one day I will have a consistent 7 hours of quality sleep with a majority of that time being in REM.

Good luck to you and I hope you figure out your specific issues and correct them very soon. Hang in there and don't give up!
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(10-09-2013, 08:24 PM)rwin Wrote: Its been 131 days since I began cpap and I'm still fatigued upon awakening and throughout the day. AHI 1.07 and RERA index 0.39. Leaks are minimal however I find myself waking up 3-4x throughout the night for no apparent reason. Consulted with two sleep doctors who both rely heavily on the numbers and have no additional insight as to why I'm still tired. Was prescribed Provigil and then Nuvigil which neither helped. Full blood workup and vitamin panel including Vitamin D3 were in an appropriate range. No anxiety or depression.

I am running out of patience and options. Will try an oximeter to obtain some oxygen readings. Please help if anyone else has encountered a similar situation. Thanks! Richard

I don't know where you live but in the U.S., there is a natural sleep aid over the counter called Somnapure that may help you. A lot of people that have used it say it works great. Hope this helps.
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(10-10-2013, 07:43 AM)trish6hundred Wrote: Hi jhellwig,
WELCOME! to the forum.!

Thanks. I was actually on the old forums for a little while.

I think that being comfortable is a big part of a good nights sleep. Not just when you go to sleep but after you have been in the same position a while. I am struggling with that problem and I think that is why I still feel tired and wake up a lot.
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(10-09-2013, 09:10 PM)eplantz Wrote: Pretty much same situation here. Sleep doctors seem to focus on easy patients and collecting compliance data. Anything complicated is pretty much ignored if the pills do not work. I suspect I have narcolepsy but cannot get the doctor to inverstigate that.

Maybe it requires a visit to a teaching hospital where there are more experienced doctors (if you don't get stuck with the student).

I am beginning to see the same thought process with physicians and nurse practitioners working with sleep disorders. Most heavily rely on data and statistical analysis from a sleep study and cpap data cards. How many people actually present their baseline sleep patterns during a sleep study in a new environment, wired up? I can recall being extremely uncomfortable. The follow-up sleep study was the same with the addition of a nasal mask blowing air through my mouth instead of into my lungs. The next thing I knew I was prescribed a cpap machine. Had a NP consult two months later. That was my experience. Medications, hormone imbalances, vitamin deficiencies, medical conditions, depression/anxiety, weight, etc., were not even addressed. Oximeter reading was taken during the period of trying to find a suitable mask instead of when adjusted to one mask. With that said there is a significant margin for error. Reliability and validity is a concern. Today, my resp therapist and I compared the Sleepyhead and Respironics report with my data and there were discrepancies.

I have learned to be more proactive and take responsibility for my health such as joining this forum, learning all the settings on the cpap and making adjustments while monitoring the data, keeping a journal, and consulting with various professionals. Hang in there!

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(10-09-2013, 09:19 PM)PaulaO2 Wrote: There's a few options to try.

Our bodies and brains have established "normals" whether that normal is good for us or not. Those of use with sleep apnea have had our bodies get used to going on little sleep, waking up umpteen times a night, and feeling tired. That's what our bodies think SHOULD be happening. So when we try to use the machine, many of us, our bodies and brains adjust and that's that. But for some people, their bodies and brains fight it. And despite getting good numbers, it just doesn't seem to be working. The trick is to break the cycle. Research and follow "sleep hygiene" and mental tricks to beat insomnia. Set up a bedtime routine. Same thing every night no matter what. Train your body and brain to this routine. Eventually, it will get used to it and slowly swing the other way.

Another is to seek out a sleep counselor. Someone who specializes in the mental aspects of sleep disorders. Not that you're crazy, far from it! But one of them can help you to figure all this out.

And another is to simply keep working at it. Keep going. There's some folks here who struggled for over a year before they noticed any difference. Despite you not feeling much better, it IS doing your body a world of good. You are doing the right thing. Your heart and other organs thank you.

I strongly believe there is a lot of truth to what you are saying in terms of the past predicting current and future sleep patterns without an intervention. The body has physiologically and biologically adapted and now it is confronted with what it may believe is a maladaptive adjustment period with the introduction of cpap. Years of untreated sleep apnea will take time to reverse. Structure, persistence, and patience is key! Thanks for the insight.

(10-09-2013, 09:20 PM)zonk Wrote: Hi rwin
For some might take few months to get the desired result. Don,t despair, find out whats waking you up, sometimes slight change can make a difference like trying a different mask which is more comfortable or adjusting humidity setting up/down if air fell cold/warm and even experiment with Flex settings from 3-2-1-off, see whats works best for you ... everyone is different

Thank you! Adjusted the flex setting last night after reading your response and it was definitely more comfortable changing the setting from 2 to 3.

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(10-09-2013, 09:28 PM)PollCat Wrote: Welcome , Richard.

A couple of questions: What do you do prior to going to bed? Are you physically tired at bed time?

Thank you! Prior to going to bed the television is on while I read the news online. It's not so much physical exhaustion as it is mental exhaustion.

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(10-09-2013, 09:34 PM)jhellwig Wrote: I have been on mine for two years and am still tired when I wake up. I have the machine set perfect and my mask is comfortable. My AHI is almost 0. I am still holding out hope that it will get better. Hang in there. I believe that the benefit is still there even if it isn't felt.

I think some of my problems might be my wife sleeping next to me. She really needs a cpap badly.

Thanks for the response! Sounds like you identified the issue. Now all you have to do is be honest, take responsibility and discuss the issue with you wife to work out a solution. Clearly, she would not want you to die and you would not want her to die prematurely due to an unresolved sleep disorder.
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You have some very good suggestions here. I think the folks targeting sleep hygiene are right on the money. Without good, quality sleep, going into the deep stages of sleep your body does not renew itself from the stresses of the day. I know it seems stupid- we always think we follow good sleep hygiene, but in a case such as yours you need to take it step by step. I think something is preventing you from getting to the deep stages of sleep.
I hesitate to suggest pharmaceuticals, but some people find Tylenol PM effective. It's posited that Tylenol can have a positive effect on mood, and the Benadryl will help you sleep through the night.
Please keep us posted so that we can help the next person with this problem.
Good luck.
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Me, too. My numbers have looked great every since I started CPAP in early May, but I have remained exhausted even with 11-12 hours of sleep. There has been nothing in my data to explain my exhaustion. I was also awakening several times a night, sometimes sweat-covered with pounding heart, but not related to an event.

However, I switched masks three weeks ago and have seen an enormous improvement. The mask I had before, although it did not leak much, was not a perfect fit. The mask I have now is VERY difficult to displace, and my leak line has gone to zero on several nights. (I posted a review on the Product Review Forum). My only explanation is that I must be hypersensitive to even small leaks. I feel like I still have some sleep debt, but I think I found a solution...hope you can too...keep searching for a solution!
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