I just don't get it.

For 6 full months I have been just bone weary tired - no matter how much I slept. I have had some other stuff going on...rehab from shoulder surgery and then developed Pulmonary Embolism (PE) with 4 blood clots in my lungs and 2 in my calf (DVT's). All from the shoulder surgery. So.... 6 months of blood thinners for me (coumadin/warfarin). I am done with those in 22 more days. YIPPEE!! I kept complaining about my fatigue to my Pulm Doc so we did an overnight Pulse Ox test...the results told him that I needed to have a sleep study and ultimately a titration study. I did and it was determined that I had a AHI of 28 - just shy of severe sleep apnea. So I became a hosehead almost two months ago. No problem..I can deal with it. I learn the machine, try a couple different masks and pilliows and even find a great way to reduce my leaks to almost zero everynight. My AHI each night runs from about 2.0 - 3.5 with most of that being from HI's and not AI's.

My machine is the autoset and is set from 5-15, with EPR of ZERO. Low humidity. Working good. I am consistantly getting 7-8 hours of sleep a night. Sleep fine with my softgel mask. No real complaints - also use papcap and it has all but eliminated my mouth leaks.

Thye problem is, I am still really, really fatigued every single day. I know that is going to take time but I would HOPE that after 2 months, and never missing a night with my CPAP..even when I traveled.....I will have a refreshing night's sleep once or twice. Just not happening with me. I dont mind wearing the hose, I really don't...IF is going to help. I am going to buy the overnight pulse oximeter to watch my O2 saturation whie I am sleeping. If I AHI is consistantly under 3 with no leaks but I still feel AWFUL each day, wouldn't the overnight pulse oximeter tell a more acurrate story if something is still going on? I mean, physically speaking, there has to be some physiological reason that I am so very tired. A year ago I was fine and had lots of energy...I am a little heavier guy...I am 6'1 and weigh 230lbs but have been this size for 10 years, Before that I weighed 180-190lbs. Work and life caught up with me and next thing you know I am 230lbs. But the fatigue started about the same time I got diagnosed with my PE but I dont think they are related to my fatigue. My sleep doc and pulmonary doc are the same person. I have my first CPCP Clinic meeting at my Dr's office tomorrow so we can talk all about everything. I am also trying like crazy to lose weight. My heart doc said he felt that my sleep apnea woould go away if I lost about 40 lbs. I have ONE BIG GOAL with all this.

Not to get off the hose or mask. It doesn't bother me.
Not to lose 40 lbs to look pretty or to race faster. Heck I did a half Ironman triathlon last April at this weight.
Not to go to so "recommend" ENT specialist to see if having my tonsils removed would help.

The only thing I want to stop happening is wake up after sleeping 7-8 hours yet feel like I have not slept in a week. Dragging around all day like I am auditioning for a zombie movie. It is an everyday thing and I just dont get it. I thought my CPAP was supposed to help. I just want to not be tired any more. If removing the tonsils gets my energy back, then when can I say AHHH.

Help! I would be ok if 4 days were miserable and 3 were good energetic days. 7 days a week, every week...just wears ya down.


Brian

Swim_Bike_Run wrote:For 6 full months I have been just bone weary tired - no matter how much I slept. I have had some other stuff going on...rehab from shoulder surgery and then developed Pulmonary Embolism (PE) with 4 blood clots in my lungs and 2 in my calf (DVT's). All from the shoulder surgery. So.... 6 months of blood thinners for me (coumadin/warfarin). I am done with those in 22 more days. YIPPEE!! I kept complaining about my fatigue to my Pulm Doc so we did an overnight Pulse Ox test...the results told him that I needed to have a sleep study and ultimately a titration study. I did and it was determined that I had a AHI of 28 - just shy of severe sleep apnea. So I became a hosehead almost two months ago. No problem..I can deal with it. I learn the machine, try a couple different masks and pilliows and even find a great way to reduce my leaks to almost zero everynight. My AHI each night runs from about 2.0 - 3.5 with most of that being from HI's and not AI's.

My machine is the autoset and is set from 5-15, with EPR of ZERO. Low humidity. Working good. I am consistantly getting 7-8 hours of sleep a night. Sleep fine with my softgel mask. No real complaints - also use papcap and it has all but eliminated my mouth leaks.

Thye problem is, I am still really, really fatigued every single day. I know that is going to take time but I would HOPE that after 2 months, and never missing a night with my CPAP..even when I traveled.....I will have a refreshing night's sleep once or twice. Just not happening with me. I dont mind wearing the hose, I really don't...IF is going to help. I am going to buy the overnight pulse oximeter to watch my O2 saturation whie I am sleeping. If I AHI is consistantly under 3 with no leaks but I still feel AWFUL each day, wouldn't the overnight pulse oximeter tell a more acurrate story if something is still going on? I mean, physically speaking, there has to be some physiological reason that I am so very tired. A year ago I was fine and had lots of energy...I am a little heavier guy...I am 6'1 and weigh 230lbs but have been this size for 10 years, Before that I weighed 180-190lbs. Work and life caught up with me and next thing you know I am 230lbs. But the fatigue started about the same time I got diagnosed with my PE but I dont think they are related to my fatigue. My sleep doc and pulmonary doc are the same person. I have my first CPCP Clinic meeting at my Dr's office tomorrow so we can talk all about everything. I am also trying like crazy to lose weight. My heart doc said he felt that my sleep apnea woould go away if I lost about 40 lbs. I have ONE BIG GOAL with all this.

Not to get off the hose or mask. It doesn't bother me.
Not to lose 40 lbs to look pretty or to race faster. Heck I did a half Ironman triathlon last April at this weight.
Not to go to so "recommend" ENT specialist to see if having my tonsils removed would help.

The only thing I want to stop happening is wake up after sleeping 7-8 hours yet feel like I have not slept in a week. Dragging around all day like I am auditioning for a zombie movie. It is an everyday thing and I just dont get it. I thought my CPAP was supposed to help. I just want to not be tired any more. If removing the tonsils gets my energy back, then when can I say AHHH.

Help! I would be ok if 4 days were miserable and 3 were good energetic days. 7 days a week, every week...just wears ya down.


Brian

In my opinion, that could be your biggest problem. Your minimum pressure is too low and your machine is changing pressure all night long......leaving you exhausted. You may not THINK you notice it, but I'll bet your system (body and mind) does.
Figure out what your best pressure is and set your machine to it in CPAP mode.


Den

Brian, do you have the software to view the detailed data? Might be helpful to see how long events last, maybe you're desatting below 90% during them...the recording pulse ox would ID if this is happening. have you tried CPAP mode? As Wulfman said, some do better without the APAP's varying pressures.

On the other hand, have you had a thyroid panel? If you have a poorly functioning thyroid, it can create tiredness, lethargy, brain fog...similar to apnea symptoms.

Hi Brian,
Sorry to read of your difficulties, I surely can relate. Hope fatigue lifts for you soon. I just wrote a similar post around 2 weeks ago. I have a similar physique, I'm 6'-2", 220 pounds. Doctor keeps telling me, I need to lose 40-50 pounds, even though I've been this height/weight past 20 years. I feel the same way you do, love using cpap, sleeping well, dreaming, etc..... but wake up feeling as if I haven't slept a week

I finally gathered software, reader/card yesturday for my cpap, the data software is amazing, now I'm learning how to interpret the data and hopefully be able to fine tune my cpap for consistency. Taking the next step, I have a feeling this is going to work for me.

Hopefully when you visit doc, you will recieve inspirational answers. Please update us.

Sorry, I don't have the answer to eliminating fatigue, still trying to figure out myself. Hope we recieve answers soon.

Swim_Bike_Run wrote: I dont mind wearing the hose, I really don't...IF is going to help. Brian

However fatigued you continue to be, if your cpap treatment is therapeutic, it IS helping you with those things it can help. If there are other contributors, cpap can give your body its best advantage to deal with those things.

Some on here have had tonsillectomies to help with their cpap treatment by hopefully enabling them to use a lower pressure, have less air in the belly, and reduce leaks. Maybe some of them will read this and share if and how the surgery worked out for them. But it doesn't seem you have the kind of complaints that led them to pursue surgery. Maybe taking Den's suggestion about going to a fixed pressure, or else really narrowing your range would be a good next step. At the same time, you could ask your doctor to run some routine tests to look for any other possible contributors to your fatigue. While 2 months is still pretty early in your treatment, it does seem with your consistent use you should see some benefit.

Let us know how this goes for you.
Kathy

I've only been on my CPAP for about 3 months, and I can definitely relate to the frustration of not feeling rested. My primary care doctor pretty much told me that after a month on the CPAP I should be back to normal, and could go back to work full-time. Never mind the fact that I was fired from my job a week after I got my CPAP machine due to my inability to keep up with the job requirements (in a field that I've worked in successfully for 15 years). Needless to say, her lack of understanding about the effects of OSA has led to me switching doctors. From my conversations with the sleep lab staff, research I've done online, and my older brother's experience with OSA, I knew it would take a lot longer than a month. I was hoping to be further along by this point too, but keep reminding myself that my brother (who has a similar sleep issue history), said it took 8 or 9 months before he started to feel "human" again. I also have to keep reminding myself that all this damage to my body didn't occur overnight, so it will take some time to repair it.

You may want to ask your doc about adding Provigil or Nuvigil to help you with the excessive sleepiness. It's helped me quite a bit, especially since I figured out that I metabolize it slower than normal. If I take 100mg when I first wake up, I'm pretty alert about 3 hours later (it's supposed to work within an hour normally). I haven't experienced any problems with jittery-ness (if that's even a word), and I'm very sensitive to stimulant medications. Might be worth exploring to help get you through until you start recovering from the OSA backlash. Good luck!
Nancy

Hi Brian,

Fatigue is one of the potential drug side effects listed for coumadin/warfarin, and since you said the fatigue started around the time you started taking that, there may be some connection. When you're able to stop the coumadin in another few weeks, it'll be interesting to see if you feel any more energetic over the following weeks.

I agree with the others that your minimum APAP pressure is quite low. Perhaps you would do better on straight CPAP or a tighter APAP pressure range. You may also want to check your sleep study to see if there was any indication of periodic limb movements or other sleep disturbances that may be keeping you from getting restful sleep.

You have made tremendous progress in troubleshooting your problems during these last few months. You're on the right track!

I hope you'll let us know how things go. I know that you've been through a lot in the last six months and you're ready to put that all behind you!

~ DreamOn

Brian,

I have been on CPAP therapy for 15 years and many of them woke up feeling like I hadn't slept. So along with the other suggestions you have received, let me add in another thought.
In January I got a new machine and am using the EPR setting and for the first time in years..I feel better when I wake up. I am so new to this feature that I can't really explain it well, so I will quote John Fischer's response to me a while ago.
EPR allows you to breathe out against the pressure more readily. You might have Respiratory Effort Related Arousals (RERAs). Essentially, breathing against the pressure may be increasing your sleep problems. But with it, you seem to breathe more readily and sleep more soundly.[/b]

What is EPR?

EPR is a comfort setting on Resmed machines. If you set it at 1, it lowers your pressure by 1 cm when you exhale to make it easier to exhale against the pressure. If you set it at 2 or 3, it lowers the pressure by 2 or 3 cm respectively to make it even easier to exhale.

Some people leave it turned off since they don't like it or their pressure setting is too low for it to be any help. It is more useful with higher pressures.

Thanks everyone for the replies. I decided to change my range last night before bed. I am normally at 5-15 and my average pressure has varied from 7.2 up to 9.8, so I changed it to 7.4-12. Not sure how I came up with 7.4. I left my EPR at Zero. I did not have a good night sleeping...woke up often and not really sure why I kept waking up. I never know if it is pressure change or what, I just wake up and then go back to sleep. The other issue I had this morning was a pretty bloated stomach and some discomfort in belly also. Seemed to have a bit more gas this morning...haha - what a lovely thought! Anyway - my stomach just did not feel right. My AHI last night was 2.6 with an AI of .1. That is somewhat normal. I had an appt with my CPAP Clinic and we talked about my fatigue and she thinks I should stop reading message boards. I explained that there were some pretty knowledgable folks on here and we just agreed to disagree. She also thought that I needed more humidity, since mine was at 1. Everytime I raise it, I get rain out and that wakes me up. So I ended up buying a hose cover, which I needed anyway. Not sure I understand the humidity argument. Plus she aggrevated me talking about this message board - it has only been helpful for me. =)

I know that I am a shallow breather - I had a lot of Brachias (sp?) during my sleep studies...I have a low HR - resting is about 49 or 50 so I wonder if sometimes at night I get to sleep and my HR slows a bit and the machine kicks in thinking I need more air. I just do not know enough about it to know for sure. I am leery about keeping the lower pressure up since I woke with the stiomach bloating and discomfort this morning. I just don't know. I am reading GaryG's journey and switching from APAP to CPAP but my experience just raising my pressure a bit has me nervous. My AHI is not bad. I wonder is a overnight pulse oximter would tell me more? I asked this in the CPAP Clinic mtg this morning and she said that during my titration my O2 was 99% so there is no real reason to think that would have changed. I am really hoping when I come off my coumadin in 3 weeks that this massive brain fog and fatigue will improve.

Should I switch back my settings to 5-15? Is the stomach thing I experinced somewhat normal when raising my lower pressure? My leaks were low last night also.

Thanks again.

Brian

Swim_Bike_Run wrote: I had an appt with my CPAP Clinic and we talked about my fatigue and she thinks I should stop reading message boards. Brian

SBR, thank your Doc for a good laugh.
I needed that.

Not that I want to see you go away.....
but, stop reading ANY message boards and
let us know how you feel and how those numbers improve.


.....again, thanks for a good laugh.

Message boards are evil.

I'm right now sitting here trying to figure out a way to take over Swim_Bike_Run's mind.

I bet $5 the doc reads this board.

jeff

Hey I defended the message board!

Swim_Bike_Run wrote:Hey I defended the message board!

Yes, you did.

I was not rudely making fun of you. I was merely rudely making fun of your doc.

Be careful defending the likes of me, though. I've been known to disappoint. And I'm on this board.

And I would never really try to take over your mind--Heck, I'm not even sure what to do with mine.

jeff