MikeJ

I was diagnosed with severe obstructive sleep apnea about 10 years ago and am very compliant on my use of my CPAP. A few months ago, I purchased a Respironics PR System One 60 so that I could get some read outs of my sleep results through using SleepyHead. I am now seeing that I have periods of Cheyne Stokes respirations on most days. Typically there are no more than 5-7 episodes a day. Sometime there are none, sometimes only 1-3. One thing that is consistent is that they almost always occur in the early morning hours between about 3 am and when I wake up.

I can't find any good information on whether that is normal. What I have read said they are associated with central sleep apnea rather than obstructive, and are often associated with medical conditions such as congestive heart failure, strokes, brain tumors, etc., none of which I have to my knowledge. I am wondering it if is one of those things that is serious in large amounts, but common in small amounts. None of the literature I have read on it talks about it other than in the extreme.

Anyone else have experience with this, and is it just a normal part of obstructive apnea? I am seeing my PCP next week for a routine checkup and will mention it to him, but he is not an expert in sleep disorders.

My experience with Jawbone was that it was useless for any real sleep tracking. There is no real scientific basis for their claims. The output is based on your movements, and even that isn't very accurate. Two examples: one time when I woke up from being cold, I sat up, pulled up the covers, and checked the clock. The next morning, Jawbone showed me in light sleep during that time. Another time, I accidentally knocked the Jawbone off my wrist and found it beside the bed the next morning. It said I was in deep sleep all night. The sleep function can only give you a general, broad idea of how active you are while sleeping and should not be used to address an actual medical condition such as sleep apnea.

I can share with you my personal experience, but I have learned that each of us has a unique physiology and we should not assume that the experience of one person will be the same for another. Discuss with your physician any medical interventions you consider. When my RLS was really bothering me, I was prescribed Requip which is also used to treat Parkinson's. I developed augmentation, which means that the symptoms became worse. After a period of nothing, my physician suggested we try gabapentin (Neurotin). Fairly quickly, I started having constant thoughts about dying, for example, while getting ready for bed, wondering if people would know where to find my will if I died in my sleep. I also had occasional suicidal ideation even though I didn't feel depressed. Obviously, I stopped the gabapentin and those went away. After another period with no meds, my physician prescribed a low dose of diazepam (Valium). That does seem to work, and the only side effect I have noticed is a bit of fuzzy-headedness in the morning. I don't take it every night, and a 30 day prescription will last me 3-4 months since I really don't like taking meds. So I guess my thought would be that meds work for some people, but be careful and work with your doctor. On a non-medical side, I bought a light blanket and sleep on top of the covers while my spouse sleeps under the covers. With only the light blanket not tucked in anywhere, it makes me feel less tense in the legs, though not sure if it reduces my kicking.

Thanks. This is very helpful. I might even consider trying the nasal pillows again. I am very good about changing the interfaces. The blue gel portion of the mask begins to take on a greenish/grey tinge over time. Insurance has actually been good about covering the cost of replacement supplies. My younger brother who had sleep apnea was not good about changing the interfaces,and he died at 58 of a heart arrhythmia. I don't know that there is any connection, but I wondered if the mold or bacteria that grows in those was a factor.

I have been using a CPAP for approximately 10 years now, using the same machine. It is a Remstar Pro with a removable card which has never been read other than possibly when it was repaired about five years ago.

I now have a new health plan and am getting vague answers about whether I can get a new CPAP, but basically was told unless it is un-repairable they won't pay for a new one. My question is whether there has been enough improvement in the technology over the last 10 years to make it worth pressing the issue or perhaps paying for one myself. The newer ones seem smaller and have computerized readouts, but are those more bells and whistles rather than important improvements? There seem to be remote data transmission options, but are those needed or used?

In addition to the machine itself, has there been real improvement in the masks. I use the triangular full nose mask that has also been around since I started. There has been some improvement in the gel inserts in those, and moving the air escape hole from the bottom of the mask to the top helped with condensation problems. I see that there are smaller versions now, but wonder if people find them better or not. I tried the nasal pillows initially, but found that they dried out my nasal cavities too much.

I find Anna's comments as well as those of others so interesting because if makes me remember things I have forgotten. Lots of things people starting out might want to know. I have been using a CPAP for 10 years now. When I first started, those straps were always getting tangled and had trouble figuring out how to get the mask on correctly. Now when I get up in the middle of the night, I don't even turn on the light any more. Even if one of the plastic balls has pulled out of the slot in the mask, I just reorient the straps and re-attach the ball in the dark and put the mask back on. Have put that mask on so many times it is now very easy. Also, my husband doesn't like the noise. For me, it just sounds like a white noise machine so I don't find it a problem. He is more sensitive to noise so he wears the disposable ear plugs I do feel a bit guilty about it, but he has never complained, so after 10 years, it is probably pretty routine for him.

My spouse is not a problem at all. He has been excellent about it and has never raised it as an issue. He tells me that he is happy I wear it so that we have more years together. It is really more about my sense of self. As with most medical conditions, when you can no longer do something you took for granted (being able to sleep without an apparatus), it not only emphasizes your mortality, but also generates a bit of a sense of being defective, rather than perfect as we all like to imagine ourselves to be.

I had a similar experience to Ruby regarding follow-up. My PCP recommended a new study 5 years after my first one. I called the Sleep Center and they indicated that the office no longer had my records since I had "not complied with follow-up appointments." I told them I found that interesting since I had never been scheduled for a follow-up appointment.

Regarding the question about not feeling comfortable with a spouse, I have the same experience. The big chunk of plastic and straps on your face makes it feel strange to cuddle, in part at least because you can't talk easily or give each other a peck on the cheek. And if there is going to be any sex, it must be pre-planned so that you don't put on the mask.

As others have said, it is a process. Initially, I used to get tangled up in the hose since I turn a lot at night. Almost never have that problem now. Initially thought I can't sleep with this on, now I use it even for naps. Regarding the humidifier, I usually don't use it unless the air is very dry in the house. It used to cause whistling during the winter because beads of moisture would condense inside the mask and would collect at the exhaust hole. Now that the hole is on top of the mask rather than the bottom, that is better, but I got used to not using the humidifier. I did find that on warmer evenings in particular, it made me feel too warm.

I have both sleep apnea and acid reflux. I have been on the CPAP for 10 years, and probably had acid reflux even before I started the CPAP, though wasn't treated at that time. I have been on meds for the reflux, and it is getting better, even with the CPAP. At the point I started treatment for the GERD, I was told I had esophageal cobbling from the acid, but that has resolved itself and I am not down to taking the meds 3 times a week rather than daily. So, at least in my experience, the CPAP didn't contribute to the reflux or prevent it from being treated.