Friday Appointment with CPAP nurse - advice

[sterobinson]

Hi,

After many months of CPAP (nasal), and gradual increase of pressure to 8.5, I'm still very sleepy. I feel physically strong and don't feel ill, I just cannot get through a day without excessive daytime sleepiness. Its probably worse now than at any other time. Even a few hours on a motorway requires a half hour rest half way through. I have dreadful memory and focus. I fall asleep quickly at night and sleep for a min of 6 hours, usually 7.

I was diagnosed with mild apnea 2 years ago.

I have an appointment with the CPAP nurse on Friday and need to tell her that something else needs to happen to help me. I guess we can up the pressure more, but I have some questions for the forum:

1. I have heard that Provigil can be given for excessive sleepiness. Has anyone been used this medication and is it available in the UK ?

2. I use a nasal mask and sleep ok with it. As I'm still suffering, should I try a full mask or are nasal masks just as reliable.

3. Ive just checked my latest sleep history via SleepyHead software. AHI 6.56, REAR Index 0.90, Average Total Leaks 28.75, 95% Total leaks 48.00. Is there anything to be concerned about in relation to the figures ?

Thanks

Steve R

[andysnorer]

Hi,

After many months of CPAP (nasal), and gradual increase of pressure to 8.5, I'm still very sleepy. I feel physically strong and don't feel ill, I just cannot get through a day without excessive daytime sleepiness. Its probably worse now than at any other time. Even a few hours on a motorway requires a half hour rest half way through. I have dreadful memory and focus. I fall asleep quickly at night and sleep for a min of 6 hours, usually 7.

I was diagnosed with mild apnea 2 years ago.

I have an appointment with the CPAP nurse on Friday and need to tell her that something else needs to happen to help me. I guess we can up the pressure more, but I have some questions for the forum:

1. I have heard that Provigil can be given for excessive sleepiness. Has anyone been used this medication and is it available in the UK ?

2. I use a nasal mask and sleep ok with it. As I'm still suffering, should I try a full mask or are nasal masks just as reliable.

3. Ive just checked my latest sleep history via SleepyHead software. AHI 6.56, REAR Index 0.90, Average Total Leaks 28.75, 95% Total leaks 48.00. Is there anything to be concerned about in relation to the figures ?

Thanks

Steve R

Hi Steve,

Sorry to hear that you are in such a state even after using CPAP.
My only advice, would be to write everything down - how you feel, how tired you get (at what time of day).
They may well suggest that you have an overnight monitoring session, where they can get to the bottom of it.

[Sleep2Snore]

Hi Steve,
Yes, write everything down including anything you want to ask.
Your ahi is a little high, so either your pressure is to low or it is leaking through your mouth. If you get dry mouths it may be short circuiting through your mouth during the night. If this is the case it might be an idea to try a full-face mask. It might be you breath through your mouth when you are sleeping and are not aware of it.
May be a combination of both.
Put all your thoughts in writing and don't be tempted to not bring something up, they are there to help you.

I used to write all my questions down and refuse to leave until they were answered. I would read something out sometimes and I would get "Now, there's a thought. I wonder!" Then something new would come out of it, so don't be afraid to ask.

S2S

[Sparticus]

It took me over a year to stop feeling tired during the day, I spent many a motorway journey with my face in the steering wheel or asleep at the lights. It took a lot of tweaking with my pressure, which I did myself through gaining enough knowledge. I do know that 1 night without a mask will take between 5-7 days to get back to feeling ok. A change of just 1cm can have a big effect on your sleep. My starting pressure on my apap is 8cm and I peak around 11.5cm my AHI is around 3 which Im quite content with. I do keep a black book (Sleep Diary) incase I need to write some probs down or something has happened. Its well worth it.

[sterobinson]

Many thanks for the responses. Very kind and informative.

The CPAP nurse has increased the pressure to 9, but she does believe from the data that my apneas are being managed through the mask I use. However, she could clearly see how tired I was and based on your advice I did my best to explain the impact that tiredness is having on my life, given than I'm otherwise fit and healthy.

She has agreed to arrange for me to see the consultant again as an urgent appointment and that I will most likely be referred for a more in-deph sleep study at liverpool.

Steve