do I have sleep apnea? Sp02 low 88, average 94

Hi,

I have sleep problems which started when I got ME/CFS. Sleep dysfunction is very common with this disease but not a lot is understood about why.

My sleep was so bad, i was basically not sleeping at all. I went for a sleep study in the UK on the NHS. It found I wasn’t sleeping right but no specific disorder that they could name. They wanted to send me for a second study to check I didnt have sleep apnea but I’m so sick anyway that I just wasnt able to make it to another study. So they put me on amitriptyline 10mg and that worked pretty well. Over the last four years it has worn off and I am not on 30mg and about to go up to 40mg. Even with 40mg I will not be sleeping as well as I was though, I suspect.

In the last two years I have had some odd heart differences that may be due to the drug or something else. GP not worried but I get hard heavy beating which rocks my body and lots of skipped beats. I can feel it, but I just bought a contec oximeter to record things. When it happens I can see in real time my heart missing the beats.

Anyway, I got this oximeter and recorded myself sleeping last night and I went down to 88% ox sat at which point my heart rate went up (presumably to compensate?) to 150 (normal around 90).

My normal oxygen level was 94.32.
My SpO2 Drop Index (i dont know what this is) was 34.88
And my % of time in SpO2 Drop (again, no idea what this is) was 68.69

The question is, what can I do with this info?
I’m wondering if people more experienced might be able to tell me a bit about what it all means.
I could try and make it to this respitory study perhaps, if it looks like I need to. I plan on testing again with my pulse oximeter tonight.
thanks

Your numbers look like they may be on the low side of normal. Collect a few more nights of data and see how things average out.

While the oximeter gives you 2 metrics to measure, a diagnoses of sleep apnea usually requires a few more channels of data. Those are usually measured during a sleep study.

There are so many variables with your other diagnoses, meds, other medical things which may not seem to be related (if there are any at all) but could possibly be related, that's for us, vs your doctor who knows you well, to make sense of things is going to be difficult. Your 02 sats also could have all or none of the above to blame, never mind apnea. Do you actually have specific symptoms of apnea (and what are they)?

Can you provide any more info at all?

Thank you so much for the replies.

It is difficult to tease apart things that may overlap. A lot of the symptoms of ME/CFS are the same as sleep apnea; there is often misdiagnosis. There are differences as well though and if you see a specialist who knows what they are talking about you can be certain one way or the other. I definately do have ME/CFS. The problem is that you can of course have both. And even I don't have apnea, sleep problems are very much the norm in ME/CFS and so I'd like to do whatever I can to understand what's going on and improve it if I can. Apart from the amitriptyline, I'm not on any other medication (there is still not even one treatment for ME/CFS). I do also have ulcerative colitis, which can have some systemic effects, but it is in remission so for the most part it can probably be put to one side.

I have problems getting to sleep, and problems staying asleep. I sleep very light and wake up all the time, constantly rolling over, etc because I'm awake. I feel like I can't breath and have always felt like my throat is being squeezed, even since I was a child I had that - like my windpipe is not big enough to let enough air in. This is a problem not just in sleep, but generally, though I do wake up sometimes gasping for breath and sometimes have to sit up to get air into my lungs. I checked my sleep study results file and this is what it says (this is from 2010):

"as our oximetry trace was a little unstable, I will instuct my college....to arrange a definite study to exclude obstructive sleep apnea."
Looking at the data, I had respitary monitoring and oximetry on one night and polysomnograph one both nights, of a two night study. The most abnormal finding was "latency from sleep onset to first REM" which was 262 minutes one night and 237 the next. Normal is stated as 89 +-15.

No snoring heard on video/sound recording.

It says that the oximetry data was compromised by my being awake the first hour when an unstable saturation trace was seen. periods of stable trace, interupted by unstable periods which maybe related to movements, as his night sleep was disturbed. The oximetry analysis shows a mean oxygen sat of 94.21% with 6.68 episodes of desaturation per hour of more than 4%.

About 75% sleep efficiency (14 days actigraph)

The sleep disturbance is not assocaited with increase in periodic leg movement index but is assocated with increase in isolated independant leg movement, suggesting a chronic low arousal threshold...Similar sleep pattern can also be seen in CFS though no alpha on delta sleep pattern was seen on the polysomnography nights.

Hi - have you looked lately at a list of side FX of Elavil (amit.)? Have you tried going off it for long enough to assess true results of doing it? Have you investigated other meds?

And chronic fatigue is not apnea of course, however debilitated you might feel, and however confused the sleep studies were, I think if you had apnea there would have been some specific indication, PLM or not. Your body has had a lot going on and we're just people/patients here who have lots of experience and relatively good knowledge of apnea along with some other sleep disorders, but throwing CFS into the mix, as well as Elavil and other things is not something we can make that much sense of especially as so much of what you describe sounds more like insomnia of some type. Hopefully someone else here (with apnea) who's also had CFS may come along with more helpful stuff, but I'd be careful about what you get off the net altogether... if necessary maybe see if you can find more help where you are, 2nd and 3rd opinions from neurologists, endocrinologists possibly, sleep people. Certainly let us know how things go and if we can help with anything.

Snowathlete, just to clarify, was your last sleep study done 4-5 years ago?

Thanks everyone for the help so far.

I do wonder if the heartrate and skipping beats could be down to amitriptyline, yes, these are potential side effects of the drug. But it has vastly improved my sleep over the last few years and so it would be a big decision to come off it. And coming off it for a short time would be a big deal too because the first couple of weeks on the drug was hell in terms of side effects. I woudln't have persevered had i not been pre-warned, but I wouldn't want to go off, for my sleep to get much worse and then to have to go back onto amitriptyline and have to go through that adjustment period again.

I only tried one sleeping tablet before, forget which it was, just a common one by my GP, a sedating type. Didn't really help.

I recognise it is difficult to work things out with the concurrent problems and messed up data. Even so, the fact you guys all have experience of sleep apnea could be helpful to me still. The problem with seeing more docs is that I'm mostly housebound and very disabled, so accessing services is hard for me. So to arrange and then go to another sleep study 20-30 miles away is something I am trying to weigh up the potential benefit and necesity of, against the physical toll on me to do so.

I guess, if my data looks quite similar to some of you then I'll have to seriously consider going, but if it looks abnormal, but not really like sleep apnea, then it probably wont be worth going to another study for me - they might just say, yeah your oxygen drops low sometimes and it shouldnt but it isn't sleep apnea so sorry can't help much with that. I'll record things again for a couple of nights and post back here and see what you think with a bit more data.

Yes kaiasgram, my sleep study was 4.5 years ago now - quite a while ago now really, but feels like yesterday.

Have you ever tried just 1 mg of Melatonin 1/2 hr before bed? Works great as long as you keep the dose low... ask your doctor if he thinks there would be any problem.