Felt OK for 5 days now back to feeling tired

[howie]

Hello

I was diagnosed with sleep apnoea in December last year and started on CPAP therapy on 23 December with a Repsironics Remstar auto-titrating CPAP with a full-face mask.

Thankfully, I got used to the mask very quickly and I was 'compliant' with the therapy (over 6 hours per night) within the first week of getting the machine. Prior to starting the therapy I had the usual symptoms of excessive daytime tiredness, falling asleep at work etc. The symptoms had become so bad I was off sick from work from the third week in December.

By the end of the first week of January I was completely used to wearing the mask and was looking forward to feeling better, but the chronic tiredness persisted and I was still off work. Then all of a sudden on 19th January I woke up feeling better than I had for years - the CPAP miracle had happened! I went straight back to my Dr and said that I was fit for work and feeling great. I returned to work on the 23rd of Jan and was like a new person, no more dozing off, able to concentrate on what I was doing for the first time for many months, my life had changed.

Then just as suddenly as the miracle cure came, on 24th January I woke up feeling exhausted and all the symptoms have returned. I'm off work again and becoming more and more frustrated by not being fit to work and not getting better. I have been checking my 'stats' using the encore software and the therapy seems to be working well, AHI's are around 4 and there are no significant mask leaks. (My AHI when I had my sleep study was 22).

Does anyone here have any similar experiences or any ideas of anything else I can do, I am desperate to get better. I am seeing a consultant physician later this week to see if I might have something else wrong with me that may be causing the tiredness in addition to the sleep apnoea.

Any thoughts or advice would be very gratefully appreciated.

Thanks

Howie

[Wulfman]

howie,

Since you're using the Encore Pro software, what do the reports show about your pressure settings and what the machine is doing? What range is your machine set for?
To have reoccurrences of tiredness is not all that unusual, but I'm wondering if you're blood oxygen levels need to be checked. Have your doc write a prescription to do an overnight pulse oximetry study. You can then pick up a pulse-ox device at a local DME supplier for the overnight study.....take it back to them the next day.....they'll download the info and give a copy to your doctor (and you if you request it).

On the other hand, to get the feelings of renewed energy is a good sign, too. I'm sorry to read that you're not experiencing them consistently.

Best wishes,

Den

[biggziff]

The "rebound" symptoms seem to be a common theme with most people. Feeling good 90% of the time seems to come between 6 weeks and 4 months. I found that I felt great for the first 3 weeks...had a rebound into sleepy-land for a month or so and then began a more gradual climb into "normalcy". The "CPAP high" is common for new users and it's frustrating when you lose it...kinda makes you see how a drug addict might feel, huh? Stay with it, talk to your doc and in no time you'll be back to good again...it will just kind of creep up on you..not slam you like the first time..but the creeper stays around!!!

Best wishes.

[Ergin]

The "rebound" symptoms seem to be a common theme with most people. Feeling good 90% of the time seems to come between 6 weeks and 4 months. I found that I felt great for the first 3 weeks...had a rebound into sleepy-land for a month or so and then began a more gradual climb into "normalcy". The "CPAP high" is common for new users and it's frustrating when you lose it...kinda makes you see how a drug addict might feel, huh? Stay with it, talk to your doc and in no time you'll be back to good again...it will just kind of creep up on you..not slam you like the first time..but the creeper stays around!!!

Best wishes.

I had a similiar experience too.
I was wondering if you had lost any weight after reaching the "normalcy"?

[howie]

Den

The pressure range of the machine is 4 - 20cm H20. The maximum pressure that the machine has run at over the last month is 11 and this was only for a very short time. Pressure reported though Encore Pro and Derek's excellent 'MyEncore' show that the machine is running at the following pressures:

Pressure____Hours_____% total time
4___________261.4______50%
5___________146.02_____28%
6___________72.15______14%
7___________30.18______6%
8___________7.78_______1%
9___________3.12_______1%
10__________0.77_______0.1%
11__________0.1________0.02%

The full report from MyEncore is

Pressure___Hours_____NRAHI_____OAI_______HI________AHI________FLI
4__________261.4_____0__________1.62______4.97______6.59_______1.16
5__________146.02____0__________1.96______5.75______7.71_______1.12
6__________72.15_____0__________2.11______5.63______7.73_______0.91
7__________30.18_____0__________2.05______4.9_______6.96_______0.86
8__________7.78______0__________3.08______4.88______7.97_______1.28
9__________3.12______0__________1.93______2.57______4.49_______0.64
10_________0.77______0__________0__________0_________0__________0
11_________0.1_______0__________0__________0_________0__________0
(I have exclude the cumulative hours and snore index to fit the chart on the page)

I would appreciate any comments that anyone has on the above stats.

Ergin

Fortunately for me, my weight is not an issue as I am not overweight and keep very fit. My weight has stayed constant throughout.

Thanks for all your replies, it's great to know that there is so much support from so many other people living with sleep apnoea.

Best wishes

Howie

[Sleepless on LI]

Hi, Howie. I have two thoughts to share on the subject. You don't say what pressure you were titrated at. There is a rule of thumb, although not a medical suggestion but one that seems to really work here, that if you are using auto, you can achieved better results by not using too low a bottom number below your titrated rate; i.e., if you were titrated at 12, don't use 7 as your low number, but rather keep it at about 10 or 11, just below the titrated rate. It seems you're using 4 as your low number, which either means your titrated rate was very low or you are just using a very low number as your bottom pressure. Perhaps trying to raise up the bottom number to just one or two cms. below your titration rate may help you.

If you think about it, it makes a lot of sense since if you were found to have the best results at such and such a rate, dropping it way down to start off with doesn't make very much sense.

The other alternative is to try straight CPAP for a week or so at the titration rate and see how you feel. Some people just do better on straight CPAP than APAP. Although there is no hard and fast rule, and MOST people seem to like auto better since it reduces side effects such as aerophagia and leaks, there are still a percentage of folks here that get better results and feel better on straight CPAP. You COULD be one of those people.

Wishing you the best and hoping you find that wonderful feeling again real soon. Don't give up. You will figure this out.

[Guest]

Looks like your lowest AHI is achieved at 9cms. I would suggest you set your machine at 8-13 for at least a week to get a good average. You're shooting for an AHI consistently under 5.0 as a measurement of success.

Leaving your auto at the wide open factory preset range (4-20cms) isn't giving you optimum treatment based on your stats. This has been a common finding amongst APAP users. Also, narrowing the range by increasing the the low end of your pressure until it eliminates most of your snores seems to be a pretty successful tactic and tends to give the best results based upon what has been reported by users on this forum.

In addition to OSA, did your PSG indicate PLMs or oxygen desats?

Let us know what you try and how it all works out.

[Goofproof]

A setting of 4 to 20, is only useful for people that don't have a clue. Guest has the best answer. Trying that for a week and compare how you feel and the readings.

Your info only shows AHI 4's @ 9 cm. A run at 8 to 13 cm sounds like it's worth a try. How's the snore data?

[laurel]

When I ordered my APAP, I was surprised that my pulmonary specialist prescribed a setting of 4-18, which seems like a huge range. Was gonna ask about that when I see him again.

I just got my card reader yesterday and just set up Encore Pro and My Encore yesterday, so I'm still trying to figure out what all the stats mean. But it does look like I'm spending most of my time at the higher end of that spectrum (makes sense, 'cuz I was titrated at 13 and given the severity of my OSA). I am surprised at how much of the time I'm at higher pressures than 13 though-- may be a very good thing I'm on APAP now rather than straight CPAP set at 13. So glad to now have numbers to look at so I can figure out how well it's working.

Are there things to look for in the stats that indicate whether one is opening your mouth during the night? That's been one of my concerns, but I haven't yet figured out if there is a way to figure that out (other than asking my husband to stay awake and watch me).

[Guest]

The leak rate.

[Guest]

[quote="laurel"]When I ordered my APAP, I was surprised that my pulmonary specialist prescribed a setting of 4-18, which seems like a huge range. Was gonna ask about that when I see him again.

I just got my card reader yesterday and just set up Encore Pro and My Encore yesterday, so I'm still trying to figure out what all the stats mean. But it does look like I'm spending most of my time at the higher end of that spectrum (makes sense, 'cuz I was titrated at 13 and given the severity of my OSA). I am surprised at how much of the time I'm at higher pressures than 13 though-- may be a very good thing I'm on APAP now rather than straight CPAP set at 13. So glad to now have numbers to look at so I can figure out how well it's working.

Are there things to look for in the stats that indicate whether one is opening your mouth during the night? That's been one of my concerns, but I haven't yet figured out if there is a way to figure that out (other than asking my husband to stay awake and watch me).

[Goofproof]

The above Guest WAS Goofproof the full time Guest.

[laurel]

I just looked at my data in MyEncore and it looks like the reduction of AHI isn't significant until I get up to 8 as far as pressure goes. I may switch the machine to 8-18 and then give the data a look again.

[Guest]

Sounds like a good idea, Laurel. Might want to reign in the higher end of your range as well-- perhaps a setting of 8-15 or something similar. You should probably give it at least a week at whatever new setting you decide to try to get more statistically significant data than just 1 night's worth. If you then see your AHI is lower at pressures higher than 8, raise the lower set pressure and give it another week. Eventually you will zero in on your optimum range. Good luck!