Question 1

Is there anyone with an actual success story?

Accepted Answer

"I got my APAP machine 7 days ago. I thought I would be going through he** for months trying to get used to the thing. I wore my nasal mask for a few hours before I went to be the first night just to get used to the feel. I went to sleep that night and never woke up until the alarm went off at 5am the next morning.
For the last 7 nights I put my mask, my machine comes on, I go to sleep and then it ramps up, I guess. I never wake up. The pressure never bothers me during the night. I never wake up and find my mask across the room. I don't have any air leaks around my mask and I had .6 events per hour last night, which is high for me.

I feel awake and good during the day. I don't have to take naps in my car during lunch time. I don't feel like I'm not going to make it through the day at 8 o'clock in the morning. I don't come home from work and go right to sleep any more." - PersistentCobaltBlueNewt1334

Question 2

6 months in, why don't I feel better?

Accepted Answer

"This discussion is extremely important-- its understandable how frustrating it is when despite following all medical advice, including wearing CPAP nightly, you still feel poorly. I am assuming by "crappy" you mean you are not feeling refreshed after a night's sleep and are feeling tired or sleepy during the day--is that what you mean?

There are a few straight forward responses, but indeed this problem sometimes does not have an evident quick fix.

As mentioned, when feeling sleepy or tired despite using CPAP the entire or most of your sleep period, you should speak with your sleep specialist to ensure you are indeed getting the optimal pressure and not losing pressure due to mask leak. Sometimes the machine's output is not precise enough to determine whether you really are getting the pressure you need and a follow up formal sleep study is needed.

A second sleep problem--such as periodic limb movements-which can disrupt sleep-might be considered. A repeat sleep study might be needed to assess this.

You and your doctor should ensure that you are getting the right number of hours of sleep per night (generally 7 to 8 for adults, but this could vary person by person) and following a consistent sleep schedule is important: no amount of CPAP will help if you are only getting a few hours of sleep per night!

Sometimes medications have side effects that include fatigue and sleepiness and you and your doctor may want to review your medications, as well as to make sure there are no other medical issues that may be contributing to fatigure or sleepiness. Undiagnosed depression is sometimes a contributor to continued sleepiness or fatigue. Obesity has been associated with sleepiness and fatigue and weight loss and diet/exercise can be helpful in improving alertness and vigor.

Finally, it is estimated that as many as 10% of patients with sleep apnea have some degree of continued sleepiness/fatigue despite what seems to be optimal treatment of their sleep disorder. It has been speculated that these patients may have had untreated sleep apnea for a long time and some of the brain areas controlling alertness may have been affected. In this small group of patients, there may be benefit to careful use of prescription medications that have alerting actions while continuing CPAP--taking such medication needs to be a very carefully considered decision by the patient and his and her doctor, and will require close monitoring by the patient's doctor.

An excellent review of the problem of continued sleepiness despite CPAP therapy can be found at: http://www.medscape.com/viewarticle/812910. This might be something you want to print out and discuss with your doctor.

But dont give up--as noted above, there are many things that need to be explored to find which of the factors, when addressed, will help you the most.

I would like MyApnea.Org to consider future research on this problem. If this problem affects 10% of patients, then with our current membership of almost 5000 people, there are at least 500 sufferers in our community. Let me know your thoughts." - Susan Redline