Feeling unfreshed, almost like starting over...

[infntyx2]

Hi all,

I've seen this topic several times prior but it goes in many directions. I know now that I was undiagnosed with sleep apnea for at least 1.5 to 2 years. I am a 2+ year CPAP user diagnosed with severe OSA (78 events per hour at my initial sleep study). I feel alot better than before CPAP therapy (especially the first few months) but have yet to ever report feeling good and refreshed in the morning. Over the past several months, I've been feeling especially bad. I've been tired enough that many of the original symptoms returned (morning headache, extreme tiredness during the day especially in the afternoon or early evening, falling asleep, elevated BP, alertness issues, etc). My seasonal allergies were pretty pronounced this year, especially with RagWeed. During this time, I also experienced severe nasal congestion when going to bed. As a nasal breather, I would put my mask on, lie down, and my nose would instantly congest. Trying to breathe through my CPAP machine felt like I was suffocating. I could improve the situation with Afrin but that wasn't a good permanent solution. If I got up, within a few minutes my nasal breathing opened back up. I was already using a neti pot, taking Allegra, singulair, and using Flonase spray without any help. Another thing I find odd is that I would keep waking up nightly around 4 or 5am, enough to disrupt my sleep pattern before I typically get up at 6:00.

My pulmonologist cannot find a cause for my feeling badly. The stats on my machine show a picture perfect CPAP patient responding well to CPAP therapy. Typically my overall AHI numbers are from 0 to 1 or 2 nightly. I've looked at my graphs for the entire time I've been on therapy and I see what he is seeing. As I've reached the age of 42 (6' and 225 pounds), he suggested getting more exercise and possibly getting a full 8 to 8.5 hours sleep nightly. However, the earlier I went to bed, the earlier I would wake up.

We tried moving my pressures from 8-12 to 10-15 but I was having alot of difficulty falling aleep at the higher pressure and staying asleep as well. I was planning on going through another sleep study to look for anything like RLS or Narcolepsy. The sleep study would include the 2nd day nap study as well. I'm now hesitant to go as I've been feeling better the past couple of weeks vs the past few months. I'm not feeling perfect but I'm not falling asleep in church, movies, or cars (like the past few months). My night time congestion hasn't been as bad either. Again, its not great but its better. I'm afraid that if I use the sleep study now, I might get worse again and not be able to get insurance coverage for a retest so soon.

I've also talked with my doctor about Provigil medication. Since this might be habit forming, I'm concerned with starting this without a sleep study to proceed it.

Any thoughts from someone experiencing similar?

Thanks!

[BlackSpinner]

I would consider a full face mask. If your nose is plugged then you may be mouth breathing.

[kaiasgram]

Hi infinityx2 -- Once on PAP therapy did you ever get confirmation that your O2 levels were good with no more desats?

[Guest]

Hi infinityx2 -- Once on PAP therapy did you ever get confirmation that your O2 levels were good with no more desats?

No. Other than the test itself. I think my o2 levels were in the low to mid 80s. But no testing followup was done afterward.

[Guest]

I would consider a full face mask. If your nose is plugged then you may be mouth breathing.

Haven't experienced any leaks. I'm a light sleeper and would definitely wake up if it were the case. Also, no stats on the machine indicating that leaking is occuring.

[kaiasgram]

Hi infinityx2 -- Once on PAP therapy did you ever get confirmation that your O2 levels were good with no more desats?

No. Other than the test itself. I think my o2 levels were in the low to mid 80s. But no testing followup was done afterward.

infnty, I share some of the experience you're having, primarily the failure to improve on PAP therapy. I've only been on cpap for three+ months but like you my sleep data is "picture perfect" yet I've experienced a spectacular failure to improve. I've actually continued to deteriorate. In trying to figure out what might be the reason and based on the fact that one of my most difficult symptoms continues to be the same nasty headache I'd been waking up with every morning before cpap, I've been trying to find out more about possible O2 issues when someone is on "successful" PAP therapy. It is possible to continue having desats if the therapy is not optimally titrated. It's also possible when using autopap regularly with a fairly wide distance between min pressure and max pressure to have some desat issues because of the intervals of time where the apap is trying to catch up with an event and doesn't do so fast enough to prevent desats (at least this is how I understood the article I'm excerpting below). If you want to "save" your next sleep study (I totally understand), you might ask your pulmonologist to rule out O2 drops with an oximeter that you could use at home, or if you have the resources you could buy an oximeter yourself and (hopefully) check this off your list of possible explanations. I finally wrangled an appointment with the head of the sleep dept. but it's not for several more weeks, but I plan to do the same. Here's an excerpt of the article I found, the journal info is at the bottom. Feel free to pm me

What is the evidence that APAP can prevent significant nocturnal oxygen desaturation in patients with OSA?

If APAP were able to adequately reduce the AHI, it is possible that significant arterial oxygen desaturation could still occur. For example, with the onset of REM sleep, it might take several minutes for pressure to increase to a level adequate to maintain airway patency with APAP. During this period, significant drops in oxyhemoglobin saturation might occur. It is possible that a technician noting significant desaturation might increase the level of CPAP more quickly. Arterial oxygen desaturation can also occur even with intact airflow. Shortly after nasal CPAP was introduced, Krieger et al.10 reported on a patient who developed a prolonged period of hypoventilation and severe hypoxemia during REM sleep while on positive pressure. Many sleep physicians have encountered patients with intact airflow on CPAP who have persistent oxyhemoglobin desaturation during REM sleep, presumably secondary to hypoventilation. Some of these patients with this problem will respond to additional CPAP pressure or a switch to bilevel pressure. Others may need the addition of supplemental oxygen.

SLEEP, Vol. 25, No. 2, 2002
Auto-Titrating CPAP—Berry et al

[Guest]

[quote="kaiasgram"]infnty, I share some of the experience you're having, primarily the failure to improve on PAP therapy. I've only been on cpap for three+ months but like you my sleep data is "picture perfect" yet I've experienced a spectacular failure to improve. I've actually continued to deteriorate. In trying to figure out what might be the reason and based on the fact that one of my most difficult symptoms continues to be the same nasty headache I'd been waking up with every morning before cpap, I've been trying to find out more about possible O2 issues when someone is on "successful" PAP therapy. It is possible to continue having desats if the therapy is not optimally titrated. It's also possible when using autopap regularly with a fairly wide distance between min pressure and max pressure to have some desat issues because of the intervals of time where the apap is trying to catch up with an event and doesn't do so fast enough to prevent desats (at least this is how I understood the article I'm excerpting below). If you want to "save" your next sleep study (I totally understand), you might ask your pulmonologist to rule out O2 drops with an oximeter that you could use at home, or if you have the resources you could buy an oximeter yourself and (hopefully) check this off your list of possible explanations. I finally wrangled an appointment with the head of the sleep dept. but it's not for several more weeks, but I plan to do the same. Here's an excerpt of the article I found, the journal info is at the bottom. Feel free to pm me


Thanks for the info kaiasgram. I believe the path you are indicating is the one my doctor was trying to get to in a round-about way. He tried increasing my pressures from 8-12 to 10-15 noting that in the case of an Apnea event, it might take the machine 5 minutes to ramp up to maximum pressure. By increasing the starting pressure and maximum, I might avoid the event or be able to ramp up enough to address it more quickly. The main problem I experienced with it was, not being able to get used to the higher pressure. The first couple of nights had me restlessly in and out of sleep all night with some very bizarre and vivid dreams. It doesn't sounds like I can get an oximeter loaner but I may try the route of getting my own. It looks like the typical price of an oximeter (with history - to record at least one night's sleep) is around $80.

In the meantime, my doctor suggested possibly taking Provigil for a month to see how I feel. That's been delayed temporarily as the pharmacy wants a prior approval on the prescription. So we'll see where that goes. I wish you well with your journey. It sounds like you are having a rougher time than I. Feel free to pm me as well if you want to cross-check next steps.

[apsews]

Check out the vitamin D poll thread. There is a interesting article there. Worth reading!

[Xney]

The followup sleep study is a good idea. I'd ask them if you could do part night on your current settings and then part split for titrating if they're seeing anything? If they just straight up re-titrate you the whole night, it won't show you current situation IMO.

It would be a good idea to get some of the other possible fatigue candidates tested like thyroid levels, iron, vitamin D, etc.

PLMD should show up on the sleep study if it's happening, but that's also a kind of thing that may not happen every night.

Not sure if you're using it, but if you're trying to go to higher pressures, use the ramp feature!

[infntyx2]

The followup sleep study is a good idea. I'd ask them if you could do part night on your current settings and then part split for titrating if they're seeing anything? If they just straight up re-titrate you the whole night, it won't show you current situation IMO.

It would be a good idea to get some of the other possible fatigue candidates tested like thyroid levels, iron, vitamin D, etc.

PLMD should show up on the sleep study if it's happening, but that's also a kind of thing that may not happen every night.

Not sure if you're using it, but if you're trying to go to higher pressures, use the ramp feature!

I've postponed the sleep study for now since I've been feeling better than in the past 3 months. This year was supposed to be one of the worst for ragweed in my region. One of my theories is that my allergies may have been contributing to sinus congestion which may have been contributing to daytime grogginess (without impacting my CPAP machine stats.) According to my doctor, they were going to re-titrate me an do the nap study the next day. I am taking meds for elevated cholestrol (runs in the family) and as a result have the blood tested about twice a year. Thyroid, liver function, and general levels are testing normal. I take a men's formula vitamin but may try an extra Vitamin D.

I do use the ramp feature on my CPAP but the higher pressures seemed to be too much. I'm a light sleeper and it seemed to be making the early morning waking more prevalent. I have noticed that may stomach has been slightly uncomfortable when I wake. I'm wondering if that is caused by aeropahgia occuring.

The one thing that I've moved forward with is taking Modafnil (Provigil) to see if it helps. I was a little concerned by reading all of the potential severe side-effects. I was also concerned that it mentioned that it could be habit forming. I'm taking this for a month to see if it helps. Blue Cross had to preapprove the prescription. If the Provigil doesn't make a difference in a month, BC would then approve Nuvigil. According to the doctor, Nuvigil has a longer lasting effect. I'll have to do some research to see if anyone has any strong opinions on these meds.