DAYTIME SLEEPINESS RUINING MY LIFE

[jwerley]

I HAVE BEEN ON C-PAP FOR SIX YEARS NOW...FOR SOME UNKNOWN REASON FOR THE PAST COUPLE OF MONTHS I HAVE HAD DAYTIME SLEEPINESS AND HEADACHES TO THE POINT WHERE IT HAS TOTALLY TAKEN OVER MY LIFE. I CANNOT DO ANYTHING WHERE I AM QUIET OR STILL WITHOUT FALLING ASLEEP, INCLUDING DRIVING...SO I HAVE HAD TO LIMIT THAT TO VERY SHORT TRIPS WITH THE WINDOWS DOWN AND FOOD IN THE CAR TO KEEP ME EATING WHILE DRIVING.
I HAVE BEEN BACK TO MY SLEEP DOC SEVERAL TIMES ADDRESSING THIS. I HAVE HAD A REPEAT OVERNIGHT SLEEP TEST AND A PAP NAP. I HAVE ALSO CHANGED MASKS, HAD THE SETTINGS CHANGED ON MY MACHINE ALL TO NO AVAIL. I AM DESPERATE!! MY INTERNIST SENT ME TO A HEART DOC TODAY BECAUSE MY HEART RATE WAS VERY LOW ON AN EKG LAST FRIDAY (39). HE TOLD ME TODAY THAT HE THOUGHT MY DAYTIME SLEEPINESS ETC. WAS DUE TO IMPROPERLY TREATED SLEEP APNEA...HOWEVER HE ORDERED EVERY HEART TEST KNOWN TO MAN TO BE DONE IN TWO WEEKS....JUST TO RULE OUT ANY HEART PROBLEMS. HE ALSO SUGGESTED A SECOND OPINION FOR THE SLEEP APNEA. MY PRESENT DOC IS A VERY WELL KNOWN AND RESPECTED SLEEP DOCTOR.
I WAS JUST CURIOUS IF ANY OF YOU HAVE HAD SIMILAR PROBLEMS TO THIS AND WHAT IF ANYTHING DID YOU DO ABOUT IT. I HAVE HEARD THAT THERE ARE SOME PEOPLE WHO JUST CANNOT BE HELPED WITH C-PAP...IS THIS TRUE? THE THOUGHT OF CHANGING DOCS AND GOING THROUGH ALL OF THIS AGAIN IS VERY DEPRESSING....BUT I GUESS I AM VERY DEPRESSED AND TIRED, OH SOOOO TIRED OF ALL OF THIS....ACTUALLY I AM AT THE END OF MY ROPE AND BARELY HANGING ON

[jen4700]

Did the problems start before or after you started using the Sleepweaver mask?

[jwerley]

OMG JEN...
THAT DID NOT EVEN OCCUR TO ME, AS I HAVE DONE BETTER ON THE SLEEP WEAVER AS FAR AS LEAKS GO AND MAINLY COMFORT. BEFORE I WAS USING NASAL MASKS....MAYBE I WAS GETTING BETTER TREATMENT WITH THE NASAL!!!! I KNEW GOD WAS LOOKING AFTER ME WHEN I JOINED THIS GROUP...THAT DID NOT EVEN OCCUR TO ME OR TO MY DOC!!!! THAT WILL BE MY NEXT MOVE....I NOTICE A LOT OF PEOPLE ARE HAPPY WITH THE "ALOHA"....MAYBE JUST MAYBE THAT WILL BE THE ANSWER!!! THANK YOU SO MUCH FOR YOUR HELP.... AT LEAST IT GIVES ME A CLUE.....BECAUSE I THINK THESE HEADACHES AND SEVERE SLEEPINESS STARTED ABOUT THE SAME TIME AS I GOT THE SLEEPWEAVER........

[chunkyfrog]

I get that you're frustrated, but someone here--or your doc--may have a clue.
Just hang in there.
I wonder if there's any test your doc is putting off because it's expensive, or he doesn't know about it yet.
Just curious, but does your computer have a shift lock?
Not trying to change the subject; but it's actually harder to read ALL CAPITAL LETTERS.

[NightMonkey]

ResScan™ Version 3.3 Software

1. What does your software show for nightly events and what do the leak and pressure lines look like?

2. Do you have dry mouth at night or upon awakening in the morning?

[jwerley]

Hi Nightmonkey....Yes my mouth and throat are dry in the morning...and I cannot take the card out of the machine myself and read it...the doc has to do that....therefore I am not familiar with what any of the numbers mean. I have decided to do what my heart doc suggested, and that is to get a 2nd. opinion on my sleep apnea treatment...
Thank you for your thoughts.

[jwerley]

Thanks Chunky Frog....will do...I am new here...So bear with me

[Julie]

Have you not tried a full face mask? It sounds like you might have your mouth open involuntarily once you're asleep, losing all the cpap air that way and getting no therapy at all... which is why you feel dried out... You need to investigate that I think.

[apnea2142]

yeah it's ruining my life too, can think clearly or read, have headaches sometimes too and fogginess
you might need to get a bipap or asv machine if you have centrals

I don't know what it is, I have asthma too but it's the sleep apnea that just gives me daytime exhaustion and memory problems. maybe with asthma you don't get enough O2 in your sleep

[NightMonkey]

Hi Nightmonkey....Yes my mouth and throat are dry in the morning...and I cannot take the card out of the machine myself and read it...the doc has to do that....therefore I am not familiar with what any of the numbers mean. I have decided to do what my heart doc suggested, and that is to get a 2nd. opinion on my sleep apnea treatment...
Thank you for your thoughts.

Dry mouth and throat are symptoms of mouthbreathing. With a nasal mask when you mouthbreath the therapeutic pressure is lost and you may still be having many apneas.

Your equipment profile shows "chinstrap". Many of us have found that chinstraps will not prevent mouthbreathing.

The solution is to use a full face mask (covers nose and mouth https://www.cpap.com/cpap-masks/full-face-cpap-mask.php). With a full face mask if the mouth opens during the night the pressure is still maintained and apneas are prevented.

I started therapy with a nasal mask and was mouthbreathing. I tried several chinstraps and the mouthbreathing continued. Then I switched to a full face mask and have had very good therapy ever since.

If the doc read the card what was your AHI?

You may also be able to take the card to your DME and get them to print out the reports for you at no charge. Might be worth asking about.

You say you have use CPAP for six years. How old is the machine you are currently using? Depending on your insurance you may be eligible for a new machine. I would recommend a ResMed S9 Autoset. If you get this machine you can download free software and read your card at home. You will then have data with which to troubleshoot and optimize your therapy. Most of the senior members do this and will not be without their data. There is plenty of help here in using the software and understanding the data.

I am praying that your heart is healthy and that all your problems are CPAP related and can be fixed easily - maybe with a different mask.

[VikingGnome]

You also might check any medications you take. Many that you may not expect cause sleep problems, like REM suppression. No matter how many hours of sleep you get and how good your AHI's are, if you're not getting REM and deep sleep, you will be sleepy in the daytime. I can personally testify to that. I finally bought ZEO after 60 days of CPAP with good numbers every night but still very sleepy during daytime. Also, my sleep study showed ZERO REM or deep sleep. I'm on an antidepressant that is well-known for suppressing REM sleep--Effexor. My doc reduced my dose by 1/3 about 10 days ago. I'm just now beginning to see a return to normal sleep architecture. Got 2 hrs of REM last night. Another medication that caused me problems with daytime sleepiness a few years ago was an antihypertensive--NORVASC.

So take inventory of you meds and look up each one online to see if it causes daytime sleepiness or suppresses REM sleep.