Low Oxygen Saturation at sleep

[snowathlete]

Hi Everyone,

Happy New Years Eve.

I have been measuring my oxygen saturation the last two nights. About 5 times a night it drops to about 90%. And about 3 times a night it drops into the 80s, twice to 86%.

Most of the times in the 80s it is for 10 seconds or less, but once it was for 40 seconds at 86%.

Has anyone had similar problems, measurements? Any knowledge on this subject?

Thanks

 

[ArgyrosfeniX]

Hi Everyone,

Happy New Years Eve.

I have been measuring my oxygen saturation the last two nights. About 5 times a night it drops to about 90%. And about 3 times a night it drops into the 80s, twice to 86%.

Most of the times in the 80s it is for 10 seconds or less, but once it was for 40 seconds at 86%.

Has anyone had similar problems, measurements? Any knowledge on this subject?

Thanks

When you are asleep, what position do you sleep in? Those that lie on their backs and fronts often have decreased respirations during the night as they have to fight gravity when breathing. Sometimes, when I'm crashed, I can't lie on my back at all - it's too difficult to breathe at all. Also, everyone's breathing changes when they are resting / sleeping and they all drop their oxygen saturation by a little bit. We just have a bit more problems with it.

86% is really low though... Do you have any problems with peripheral circulation (blood flow to the fingers)? It could be that you need to check your sats
at a different location on your body if this is the case. Depending on the meter you are using, you might try the ear lobe or possibly across the bridge of the nose if a different finger doesn't work better.

Lastly, if you're concerned, talk with your doctor. They should be able to help you with this.

 

[snowathlete]

Thanks for the reply.

When you are asleep, what position do you sleep in?

Well, i dont sleep on my front ever. I sleep on my side, and when i am asleep i do sometimes roll onto my back, but its hard to say how much really.

My oxygen in the day is consistant bettween 96-99%.

I dont think i have any circulation problems, though i have noticed that wearing the monitor means i tend to leave my hand outside the covers, and that finger gets colder than normal.

With the model im using i think it would be difficult to measure the ear lobe or nose. A toe might be possible - is that worth trying do you think?

I actually have an outstanding respitory sleep study to go to. My ME.CFS doctor wanted to rule it out, just on the off chance it was sleep apena, so i will go to that.
But i think this is an additional problem to the ME/CFS. Perhaps contributory but still seperate. I think that because my other symptoms are so obviously ME/CFs and many wouldnt be caused by sleep apnea.

I just want to go armed with as much knowledge and info as i can.

 

[Whit]

I've done a couple sleep studies and my oxygen level drops to 91% at the lowest during the night. They said I have mild sleep apnea. I went back for a "titration study" with a cpap machine but couldn't sleep with the machine at all, it was way more intense than I was expecting- tons of air blown into the nose. I might try the cpap study again, I'm not sure. I'm trying mouth pieces first.

I wonder if it's part of CFS or could be a separate contributing facor.

 

[Kati]

I have done a full sleep study. I was surprised to hear how much time I was spending sleeping on my back- I am not a back sleeper- so I believed. The sleep study will tell you that.

As for the oxygen saturation- an ENT dr or a sleep specialist will look at the readings and knows what is acceptable and what isn't. Saturations over 90% are considered acceptable. Then they start grading the sleep apneas as mild, moderate and severe with criterias which I don't know. I don't think that your numbers are too worrisome but who am I to tell?

Of note, don't be surprised that your physician don't give S%^T about the lack of stage 3 or 4 deep sleep. Most of us PWME want to understand why we wake up so exhausted every morning. Unless you have severe snoring, and sleep apnea, it is not likely that it be addressed.

 

[floydguy]

I've gone through a number of sleep studies and fall into the moderate/severe sleep apnea category despite no obvious reason (ie overweight, nasal blockage, etc.). One of the interesting things I found is the observation of paradoxical breathing (eg stomach goes in on inhale rather than out). I am fairly certain this came about the same time as my illness. Personally, I think it's part of the brain/ANS dysfunction that goes along with this. Some seem to be helped by CPAP but for me I couldn't sleep at all with it.

 

[slayadragon]

That's interesting, Floyd. A sleep study is one thing I've never had done. Considering that I never recall dreaming, apparently snore badly and feel crappy every single morning, I'm thinking maybe this is an issue for me too. Do you have any thoughts for me?

Thanks, Lisa

 

[heapsreal]

I have done a full sleep study. I was surprised to hear how much time I was spending sleeping on my back- I am not a back sleeper- so I believed. The sleep study will tell you that.

As for the oxygen saturation- an ENT dr or a sleep specialist will look at the readings and knows what is acceptable and what isn't. Saturations over 90% are considered acceptable. Then they start grading the sleep apneas as mild, moderate and severe with criterias which I don't know. I don't think that your numbers are too worrisome but who am I to tell?

Of note, don't be surprised that your physician don't give S%^T about the lack of stage 3 or 4 deep sleep. Most of us PWME want to understand why we wake up so exhausted every morning. Unless you have severe snoring, and sleep apnea, it is not likely that it be addressed.

Ditto, there doesnt seem to be much they can do about lack of stage 3/4 sleep. Just traditional sleep meds can be used, more sleep is better then no sleep i guess. Some meds like trazodone they say increase deep sleep but although they help me sleep some im not sure if it greatly improves sleep quality. Plus i think alot of the time we just feel like crap because of cfs/me although lack of sleep can make us feel alot worse.

cheers!!!

 

[snowathlete]

That's interesting, Floyd. A sleep study is one thing I've never had done. Considering that I never recall dreaming, apparently snore badly and feel crappy every single morning, I'm thinking maybe this is an issue for me too. Do you have any thoughts for me?

Thanks, Lisa

Before i had my first sleep study and was put on Amitryptaline, i couldnt remember having any dreasms. Now i get them most nights. Including a reoccuring one where i havent done my A level course work all year and the deadline is like next week.....I finished my A levels over a decade ago, so this dream is somewhat annoying, as it gets me stressed for no reason...

 

[floydguy]

That's interesting, Floyd. A sleep study is one thing I've never had done. Considering that I never recall dreaming, apparently snore badly and feel crappy every single morning, I'm thinking maybe this is an issue for me too. Do you have any thoughts for me?

Thanks, Lisa

I've found deep breathing exercises and light stretching helpful before bed. Classical music also helps. The psychs might call it "stress" but I don't think that's the issue. There's something that's gone wrong in the brain - something a lot closer to autism than "stress". Finally, the environment helps a lot. Avoid mold, chemicals and get silk sheets and duvets directly from China which likely don't contain any chemical crap. For some reason a fan blowing lightly on me helps too.

 

[slayadragon]

What kind of doctor would order a sleep study? Is this something that insurance pays for? Is it worth having them done?

The odd thing is that I sleep pretty easily now -- nothing like the agitated exhaustion thing pretending to be sleep, that I had when I was really ill. Even in not-pristine environments, my sleep is pretty continuous. And I don't wake up feeling agitated or exhausted, exactly. I just don't feel really good, and it takes me a long time to get going.

I'm sure that whatever is wrong with my sleep, it's related to my CFS/mold issues. But it still could be a variety of things. A fungal infection in my sinuses, for instance.

I talked to one person who is "mostly recovered" from CFS who says that she uses some kind of mouthguard. However, she says it takes her a really long time to get going in the morning, so I'm not sure that her sleep is all that great even with the mouthguard. So something else must be broken, for her.

The things that you are doing to help your sleep seem to have been arrived at as a result of trial-and-error or logic, Floyd. It doesn't sound like the sleep study gave you insights into how to make your sleep better. Perhaps that's why Guyer (my CFS doctor) has never suggested a sleep study -- he doesn't test things unless they're going to help him decide on treatment suggestions.

Best, Lisa

 

[Valentijn]

What kind of doctor would order a sleep study? Is this something that insurance pays for? Is it worth having them done?

My doctor at a Dutch "Fatigue Clinic" that specializes in ME/CFS ordered one for me. Dutch insurance covers it completely. No idea what country you're in though. If it's in the US, I think the answer depends very much on who your insurer is and which insurance plan you have.

 

[ArgyrosfeniX]

For some reason a fan blowing lightly on me helps too.

I have a fan that blows on me too. It blows somewhat into my face, so I don't know if it is having a slight CPAP affect. All I know is it helps...

 

[floydguy]

What kind of doctor would order a sleep study? Is this something that insurance pays for? Is it worth having them done?

The odd thing is that I sleep pretty easily now -- nothing like the agitated exhaustion thing pretending to be sleep, that I had when I was really ill. Even in not-pristine environments, my sleep is pretty continuous. And I don't wake up feeling agitated or exhausted, exactly. I just don't feel really good, and it takes me a long time to get going.

I'm sure that whatever is wrong with my sleep, it's related to my CFS/mold issues. But it still could be a variety of things. A fungal infection in my sinuses, for instance.

I talked to one person who is "mostly recovered" from CFS who says that she uses some kind of mouthguard. However, she says it takes her a really long time to get going in the morning, so I'm not sure that her sleep is all that great even with the mouthguard. So something else must be broken, for her.

The things that you are doing to help your sleep seem to have been arrived at as a result of trial-and-error or logic, Floyd. It doesn't sound like the sleep study gave you insights into how to make your sleep better. Perhaps that's why Guyer (my CFS doctor) has never suggested a sleep study -- he doesn't test things unless they're going to help him decide on treatment suggestions.

Best, Lisa

A regular PCP can order it. The cost of the full blown sleep study where you go into a clinic and sleep for the night is expensive but usually paid for by insurance. There are cheaper options where a device can be sent to your home but doesn't record as much information. Generally, I think a sleep study is ordered early on the dx process. For some just affected by fatigue it might be THE answer but for those with more than "fatigue" it probably isn't the answer. However, a CPAP does seem to help a percentage of people with CFS so it might be worth it if insurance covers the expense. Using a cheap mouth guard might be a start. Can pick one up at any pharmacy for a few bucks. The guard will help keep your tongue and place (if that's a problem) and might help with better sleep.

 

[Sushi]

I think the value of a sleep study depends hugely on who interprets it. I had one ordered by a neurologist. It was clear that all he was interested in was sleep apnea--which I didn't have.

He had no helpful suggestions for the 98 times I woke up partially or the fact that I had no stage 3 or 4 sleep. It was, for me, a worthless test as his only recommendation was to improve sleep hygiene! At least insurance fully paid for it.

Had an ME specialist read it, maybe there would have been some useful feedback.

Sushi

 

[floydguy]

I think the value of a sleep study depends hugely on who interprets it. I had one ordered by a neurologist. It was clear that all he was interested in was sleep apnea--which I didn't have.

He had no helpful suggestions for the 98 times I woke up partially or the fact that I had no stage 3 or 4 sleep. It was, for me, a worthless test as his only recommendation was to improve sleep hygiene! At least insurance fully paid for it.

Had an ME specialist read it, maybe there would have been some useful feedback.

Sushi

I completely agree. Especially, in my case as the neurologist was connected to the sleep clinic and was probably also receiving kick backs from the CPAP provider. The study is nothing but set-up to sell a ridiculously expensive CPAP to someone. I wonder what percentage of people who get the sleep study are recommended to get a CPAP...95-100%.

 

[floydguy]

It was, for me, a worthless test as his only recommendation was to improve sleep hygiene!

Sushi

I think this is another good point for us all to consider. By and large the MD community if they can't come up with a dx in 5 seconds or less is too willing to "blame" the patient. Perhaps in some cases or maybe even many cases that is the case. But improving sleep hygiene sounds to me like he is basically accusing you of drinking a bottle of vodka in bed, eating bon-bons and chips, watching tv until 3:00AM in a moldy worn out bed purchased during the Truman Administration. So I would suggest that people take a picture of their bedroom and lay out their sleep routine so they can't dismiss this as "our fault".

 

[Whit]

I have a fan that blows on me too. It blows somewhat into my face, so I don't know if it is having a slight CPAP affect. All I know is it helps...

I don't think so, I think it's just cooling your face. A cpap machine seals to your nostrils or face and blows A LOT of air forced into your nose through this seal. It's so much that if you open your mouth, air blows out. One of the reasons I can't use one, because my mouth opens when I sleep so I'd have to use an elastic strap around my head to keep my jaw shut. That plus the cpap mask plus the eye goggles I have to use for my dry eyes (which are from CFS) would mean my whole head would be covered in stuff.

 

[November Girl]

I have sleep apnea, and feel better when I sleep with a CPAP machine. It certainly doesn't make my ME/CFS go away, but I try to deal with the health issues that I can control. I think ME is enough of an assault on the body. My sleep study 15 or 20 years ago just addressed the apnea. My first mask and machine were pretty difficult to cope with - mainly because the machine blew out at full pressure all the time. Newer machines adjust the pressure to what you need at the moment, and can be set to ramp up slowly. Another thing that helped a lot was to deal with the chronic allergy-like sinus issues that are part of my ME symptoms. When my nasal passages were so swollen, it was hard to get enough air through them to keep my throat open.

There are plenty of "sleep clinics" that just address the apnea issue. (The doc who did my study wouldn't talk about anything but apnea.) There are also some who look at the whole pattern of your sleep. The one my PCP wanted to send me to isn't covered by my insurance, but I do want to have another study done with a more qualified doctor than last time.

Lastly, there is a very knowledgeable forum community at CPAPtalk.com

 

[snowathlete]

For some just affected by fatigue it might be THE answer but for those with more than "fatigue" it probably isn't the answer. However, a CPAP does seem to help a percentage of people with CFS so it might be worth it if insurance covers the expense.

I think this is absolutely right. If you just have fatigue and associated symptoms then you may have sleep apnea and not ME/CFS.

But if like me you have all the other weird stuff including immune problems, then this isnt going to cure you. However, the way i look at it is, if i do also have sleep apnea and can treat it, then that helps by taking some load of my system and increases my chances of recovery from ME/CFS. So i think it is well worth persuing. This is just one area i am trying to improve to reduce the stress/load on my body that i can control.

Here in the UK, sleep studies arent generally easy to get on the NHS. I went for years with problems before they finally refered me and i then sat on a long waiting list. I also had to travel 75 miles to somewhere with the right setup.

I had a full sleep study, and a good sleep doctor interpreting things. Most sleep studies are respitory ones, and they are setup to find and treat breathing problems, like sleep apnea, because they are relatively common (comparitively) so if your sleep problem goes beyond this, then you need to ensure you have a full sleep study.

Also, it is hit and miss, because on the night of the study, in strange surroundings, with lots of wires on you, you wont sleep how you normally do. So you need to get more than one night study to increase the liklihood of picking something up.

Whit, its interesting you mentioning dry eyes caused by ME/CFS. My onset was gradual in my opinion (looking back at any rate) and one of the things that coincided (though i had never considered it before) was my eyes becoming dry. So much so that i couldnt wear contact lenses anymore, even the breathable/wet ones, because my eyes dried out in seconds.
Is this a common ME/CFS symptom? Any idea what causes it?

By the way, last two nights my oxygen has dropped lower, close to 80 on a few occations.