5 months on CPAP but not a lot feeling improved. What now from here?

[madeleinewr]

Hi all, I've been lurking a while, finally speaking. Kinda frustrated. I understand this can be a long journey but I was hoping to have some improvement after a couple months at least, so I'm after some guidance on what I should be working on.

I'm 24, Female and Overwight. I was diagnosed with OSA December last year after describing my daytime sleepiness and snoring to the GP, I fall asleep at my desk everyday at work and rarely made it through a whole lesson in Uni/School (16-17 on the epworth scale).

The initial in lab sleep study recorded that I experienced 27 apnea events per hour. Initially I was prescribed a CPAP machine at 4% pressure and had to wait 2 months for the titration study. I almost gave up on the damn thing a week in cause I couldn't breathe with it on. After some googling I experimented with the pressure setting, finding it much more bearable at 8%. This brought AHI down to less than 4 at most.
At follow with the dr a month later, after describing this said I could go as high as 10% pressure if I wanted. I was prescribed 150mg Armodafinil daily. (wow it's expensive) to combat the sleepiness I was still experiencing daily.
In lab titration indicated 14% pressure would stop my apnea events on my front and side. I didn't sleep on my back enough to get conclusive data for that in the study. Dr said auto at 10-18% should do it. I found 14-18% was more comfortable.

But overall, I'm told my AHI is pretty good, normally no more than 1, I'm getting at least 6 hours sleep each night. I'm not snoring all night, my partner is grateful of that. So I know it's doing me good and I'm comitted to using it everynight. BUT I'M STILL JUST AS TIRED AS I'VE EVER BEEN. I still fall asleep everyday I'm un-medicated, sometimes even when I've taken my Armodafinal at 9am I'll fall asleep by 1pm. I just had to wait 2 weeks for a replacement machine after handing the rental back which only arrived 1 weeks ago, and I was just as tired with or without. I've been slowly dropping weight as recommended by the Dr, only 10kg down since December but I'm getting there.

I recently had my 4th followup appointment with the Dr while the new machine was in transit. The conversation could be summed up as:
Dr: "How's it all going?"
Me: "Good, aside from I'm still very sleepy without Armodafinil, and even then, still a bit."
Dr: "Great! See you in 12 Months!"

I'm going to try to see another Dr soon, just cause I feel I'm not being fully listened too currently.
Stats attached from two nights this week, more or less the same every night, just the cleanest this week (there's been issues with the smoke alarms this week......)

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[palerider]

(there's been issues with the smoke alarms this week......)

It's been a day for non-sequiturs.

Your AHI is great, but your breathing is somewhat irregular, and your sleep is too short.

Go to bed an hour earlier and raise the pressure settings to min 15, max 20, and let's see if that helps any.

[mrpackerguy]

I'm at max 20mm,but 90% of the time I'm at 9mm. I don't feel like I'm any better rested and don't wake up refreshed. I didn't seek treatment due to feeling tired. I sought treatment because my wife couldn't sleep and noticed apnea. But my numbers show I'm doing well and my wife appreciates I don't snore and keep her up. So medically and maritally, I'm better. Good enough for me.

[Julie]

Mrpackerguy - you're hijacking this thread and replies to the OP will be confused with any to you - start your own thread.

Madeleine - Have you been tested for e.g. thyroid problems? Any other 'conditions' that might cause fatigue? Sometimes people (even docs) get caught in one idea and forget to look further for answers.

[werther]

Hey palerider, if you don't mind, can you explain how you see that her breathing is irregular?

[madeleinewr]

Yeah I'll concede the short sleep has been an issue the past few weeks. Always at least 6, but I need to go back up to 7-8 hours like I did before. I'll crank it up to 15 and see how it goes, thanks.

I've got some pretty shocking asthma which might explain my irregular breathing patterns at night.
I was tested for thyroid stuff a while go, it was a touch under performing and was instructed to use iodine salt to treat that.
Vitamin D level has been severely low in the past. I take supplements to keep that up now. So I guess I am a bit of a fustercluck of possibly fatigue inducing problems but each addressed so far hasn't solved much symptons wise.

[Miss Emerita]

Madeleine, in so many ways you're doing well. You are doing your long-term health a big favor by successfully treating your moderate apnea, and you are gradually losing weight (the best way to lose it if you're going to keep it off). I'm sorry you're still feeling wiped during the day.

As palerider noted, you might do well to try getting more sleep at night. Your need for sleep now may be greater than it used to be; it's not a constant thing over a lifetime. And some people just plain need 9 hours to function well during the day. You might be one of them, so it's worth the experiment even if it means disrupting some of your normal daily patterns.

It's hard to get a doctor to pay attention to a problem that hasn't gone away with his or her diagnosis and treatment. I recommend talking with your primary care physician, explaining that the apnea is being successfully treated with CPAP but the daytime sleepiness is still causing [fill in detailed description of what you do and feel]. You could quite easily have a separate health problem that needs to be addressed, so a diagnostic workup is definitely in order.

Finally, I do just want to mention the guidelines for restful sleep, in case there are any of them you might want to work on:

• Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
• Don’t go to bed unless you are sleepy.
• If you don’t fall asleep after 20 minutes, get out of bed.
• Establish a relaxing bedtime routine.
• Use your bed only for sleep and sex.
• Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
• Limit exposure to bright light in the evenings.
• Turn off electronic devices at least 30 minutes before bedtime.
• Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
• Exercise regularly and maintain a healthy diet.
• Avoid consuming caffeine in the late afternoon or evening.
• Avoid consuming alcohol before bedtime.
• Reduce your fluid intake before bedtime.

[Miss Emerita]

Madeleine, I didn't see your post before I put up mine. I think it's time to get your thyroid and vitamin D levels retested, plus have some broader testing panels to see what might be going on.

[kteague]

Try to not be too discouraged with not seeing expected results after 5 months on CPAP. One shouldn't expect much results until their therapy is optimized and they have spent some time getting adequate sleep with effective treatment. If your treatment does need the settings tweaked, and you do that along with getting more sleep, hopefully those results you desire will soon follow. I am not one who delves deeply into the data, but even I can see when you have long stretches at a pressure of 14 your flow rate is jagged. Palerider's suggestion to increase your lower end makes sense to me. You might want to post some data for him to check if the change fixed whatever he is seeing.