Five Years and No Improvement

[sybert1ger]

Hi All.

I've been on CPAP for nearly 5 years. I've yet to feel better for even a day. I wake up tired and my energy level goes down from

there. My sleep doc's only suggestion has been to adjust my pressure. I've been able to get my AHI to about 1.5 for the past few

years. I tolerate the treatment well, sleep 7-8 hours a night without waking and fall asleep quickly.

I've followed all the advice I can find on here. I've gone so far as to purchase a pulseox. It shows my O2 levels never dropping

from the mid-high 90s.

I've had a follow on sleep study and that two resulted in the my doc's only advice being to increase the pressure.

After years of high compliance I recently decided to take a few weeks off of CPAP to better document any differences I may feel

while using CPAP.

In general here's my findings:

Without CPAP - Tired but a little more clear headed. Get out of bed a little easier.
With CPAP - Slightly less tired but much more of a brain fog throughout the day. Barely drag myself out of bed.

With or without, my body feels achy and I have a mild headache.

I know treatment takes awhile to show results but it's been 5 years and without any improvement I'm losing hope in ever feeling better.

Does anyone have any ideas of other avenues I should be exploring?

Thanks for any advice.

[Artcarved]

You might ask your Primary Doctor to test you for thyroid problems. You may need more iron.

[pap4life]

Congrats on staying with the therapy for 5 yrs. All of your numbers seem to be in the enviable area. Lathorgy may come from another malady. How about your blood work? Is your weight in the normal range?
Say your blessings that you have tolerated CPAP for 5 yrs and your are still around to see the good numbers.

[BlackSpinner]

Yes but sleepiness is only one of the presenting problems. Damage to major organs is one of the less visible side effects of OSA. Do you have an oxymeter to check your desats when sleeping without? During these five years you avoided some major heart and stroke risks, even if the sleepiness is not better

[cowlypso]

Definitely make sure there's no other (non-sleep) disorders causing your problems. Thyroid, iron, B12, D, etc. Also consider other sleep disorders (PLMD, narcolepsy, idiopathic hypersomnia).

[ameriken]

I agree with everyone, esp since your O2 levels appear good.

If it were me, I'd be talking with a general practitioner about other possibilities as mentioned above, there is probably another issue or issues other than SA.

You're profile doesn't state your gender, however if you are male, you may also look at 'low testosterone' which will also slow you down and make you feel weak, tired, lethargic, moody, etc. Low-T is actually what my 1st doctor thought it was.

[Emilia]

I agree that you need a full physical and blood workup. Vitamin D3 levels are very important for combatting fatigue. Most labs consider anything between 30-100 as 'normal,' however, the latest research indicates that optimal levels should be 50-75. I was tested and had a low level of 33, and with supplementation, I now keep it at 60 or so. BIG DIFFERENCE! It is important they do the 25hydroxy test for that. I also have hypothyroidism, and my thyroid is still slowing down a bit each year which is why I am tested every 6 months and have my thyroid Rx adjusted to keep my TSH in the recommended .5-2.5 range per the American Thyroid Assoc. guidelines.

Fatigue is a difficult thing to pin down as there are so many possible causes for it. Since being on cpap, coupled with my improved D and TSH, I am feeling much better. Not the Energizer Bunny I had hoped for, but, then, I am not exactly a spring chicken anymore, either

Good luck... and kudos to you for sticking with your therapy regardless of your situation. Remember, the OSA is an insidious thing....and keeping your therapy going is helping ward off many worse issues down the road.

[chunkyfrog]

I agree; put your doctor to work.

[CatherineF]

Does anyone take arousals and sleep fragmentation into account? Maybe sybert1ger does not have (almost) any apneas or hypopneas but he does have multiple arousals anyway? Due to different reasons than obstruction of the airway perhaps... If I were you I would try some pills like trazodone, it increases arousal threshold in obstructive sleep apnea, maybe it would help with arousals. Maybe you have GERD or chronic pain? Maybe CPAP irritates your nervous system and wakes you up often at night? We shouldn't brush off this possibility, it is highly possible IMHO. Vitamin defficiencies, thyroid problems can be easily adressed and he can try this first of course, but I honestly doubt that it contributes to the brain fog and tiredness in such an extent. I am struggling with brain fog for 8 years now and I adressed all! other possible causes of this. In my case it is UARS and apnea what causes the harm.

[LittleRedTruck]

I understand totally ! For 5 years and 14,000 hours on Respironics Bipap. I felt the same way every day. That machine does not score Centrals, periodic breathing, Cheyne-Stokes respiration and other complex sleep problems. So now when Medicare eligible for a replacement, I chose a RESmed s9 Vpap that is fully data capable, printed graphs and found I had complex sleep disorders. Presented them to my Dr last Monday, was in sleep study last Wednesday, Seeing Dr today for a Adaptive Servo Ventilator machine that treats complex disorders. They rushed me thru the process, its so severe. So as people indicate, it could be non sleep related, but a Low Ahi doesn't tell the complete story on your 5 year old machine. Best of luck, hope you feel better soon. Dan in Minn

[archangle]

Consider getting a machine that records waveforms like PRS1 Auto or S9 Autoset.

PRS1 Auto is under $700 online. Maybe cheaper if you watch craigslist for a while. You can find out so much more with waveforms. The machines also score more types of events as well.

[sybert1ger]

Thanks everyone for the advice! I've actually had a lot of blood work done and as someone mentioned Low-T has been an issue> I had gone on therapy for that prior to CPAP and didn't show any improvements. I just started trying it again so maybe that with CPAP will finally show some improvement.

Keep up the advice though. I've investigated every common occurence I can think of. It's looking outside the box time!

[newname]

Sybertiger:
If you find a "cure" for yourself, please let me know. I have been faithfully using cpap for five years too and feel no different, except for the fact I have to sleep every night with those straps across my face!!!! and on my back most of the night(I like side sleeping)
Maybe there are some people for whom cpap just does nothing. Join the club!!!!!
I have good oxygen levels too.

[BlackSpinner]

Sybertiger:
If you find a "cure" for yourself, please let me know. I have been faithfully using cpap for five years too and feel no different, except for the fact I have to sleep every night with those straps across my face!!!! and on my back most of the night(I like side sleeping)
Maybe there are some people for whom cpap just does nothing. Join the club!!!!!
I have good oxygen levels too.

No there are some people where the presenting symptom - tiredness - is not addressed. However their major organs are much happier and they will live longer. Celebrate that you feel no worse, it means cpap is working.

[ameriken]

Thanks everyone for the advice! I've actually had a lot of blood work done and as someone mentioned Low-T has been an issue> I had gone on therapy for that prior to CPAP and didn't show any improvements. I just started trying it again so maybe that with CPAP will finally show some improvement.

That's why I thought I'd bring it up...I had the same thing happen...my first doctor attributed my fatigue to Low-T, and put me on the patch. It helped, but I was still having fatigue. Everytime I mentioned that I was still tired he kept coming back to the testosterone and to give it a chance, SA was never mentioned as a possibility.

Hopefully we'll both see the improvement, good luck! Ken