Questions :)

[Julia Maple]

Hello everyone I am new here.

I will, first of all say that I do not have any diagnosis pointing to sleep issues, it has not been tested so far.
I came here with a question. And I hope it is ok that I am joining you here for a bit, to learn a bit more.

To give a bit more insight into where my questions come from:
I am 32 years old, and have been suffering from chronic tiredness since I was 16, with no diagnosis for years. Only recently (this year) I got diagnosed with POTS (postural orthostatic tachycardie syndrome). Which is basically a glitch in the autonomic nerve system, its also called Dysautonomia.
The autonomic nerve system regulates everything that should go 'automatic' in your body, including heart rate, blood pressure, temperature regulation, respiratory rates, digestion etc etc. For now I only know for sure (has been tested in a hospital) that I have issues with heart rate and blood pressure. Nothing else has been tested yet.
My blood pressure is generally too low, and my resting heart rate is too low as well usually (bradycardia). When I am standing, it shoots up into tachycardia. (that is the POTS)

The thing is, that I wake up every morning feeling as if a bus hit me, I feel horrible. So tired, so weak. I suspect my body might not regulate itself very well during sleep. Maybe I breathe wrong, maybe my heart-rate goes to low.
Doctors have difficulty with helping people that have POTS, medication is used for the blood pressure issues, I take steroids to make it higher. But there is not a whole lot they can do for me. I am trying out different types of other medication, but so far have had no luck.

I wondered if doing some sleep measurements might give me some insight in what happens during the night, maybe those can explain why I feel so horrible. I also have a badly congested nose all the time (its just never really open). So measuring oxygen levels might be interesting and helpful.
I was thinking about tracking everything, like you guys do. I want to buy a pulse oximeter, and thought the Contec CMS50E might be a good one? It should be one that helps me track my heart rate and oxygen levels for lots of hours/the whole night.
Would this one be a good choice? (would like to see good graphs as well).

I was wondering what other things people can advice me.
Thanks a lot in advance I hope to learn a lot here.

[LSAT]

Personally, I would opt for an overnight sleep study.....
http://www.webmd.com/sleep-disorders/gu ... ysomnogram

[JDS74]

The CMS50E is a good unit but it attaches only to the fingertip and some find that uncomfortable.
The CMS50F is a wrist unit with a soft fingertip sensor that is much more comfortable. That's the one I use.

[BlackSpinner]

I second the idea that you need an on site sleep study. There are several different kinds of sleep apnea which require different types of machine. With your back ground I would suspect a combination of Central apneas (where your brain forgets to breath) and obstructive apneas (where your muscles relax and close up your breathing) as possible but they can only diagnose that in a lab setting.

[bonjour]

I'll second the overnight sleep study.
The study will monitor your sleep state, look for and identify any neurological caused sleep issues, as well as the more common obstructive causes and measure your O2 saturation levels over night.

Once you complete this you will be much better able to decide on any corrective actions

[CDG]

[quote][/quote]
Sleep study would tell you much more about what is causing your tiredness above and beyond lack of oxygen and low pulse. It will inform you about how much of each stage of sleep you get, which is vitally important in getting a more comprehensive understanding of your morning tiredness.
That said, I added a CMS50F to my equipment recently because I am not achieving a low enough apnea index, and want to monitor my O2 and pulse. If you do choose to go this route, I will say that the CMS50F finger probe is comfortable to wear overnight (unlike one I'd used before). These are great little devices, but they come with report software for PCs. You cannot use it with a Mac unless you also use a PAP machine and SleepyHead software or have software for your Mac that lets your Mac come a virtual PC. And I found that it can take a while and more than a bit of frustration to work out.

[kteague]

If you do the self monitoring and it points to an abnormality, you will want to have a sleep study to more fully investigate.
If you do the self monitoring and it reveals no obvious abnormality, you will want to have a sleep study to see if you've missed something.

I suggest you expedite things and get the sleep study sooner rather than later. You describe feeling miserable, and if it were me, I wouldn't want to continue like that any longer than necessary. Since your symptoms are so bad upon waking, it just makes sense to take a good look at what leads up to those symptoms. Your other medical issues make me feel an in-lab study is your best option. If offered a home study instead, I would decline. Your situation merits more info than the home study will give you.

Curious if you're on any meds that could be contributing to how you feel?

[ChicagoGranny]

I suggest you expedite things and get the sleep study sooner rather than later.

+1

I want to buy a pulse oximeter, and thought the Contec CMS50E might be a good one? It should be one that helps me track my heart rate and oxygen levels for lots of hours/the whole night.
Would this one be a good choice? (would like to see good graphs as well).

Are you aware that most DMEs will provide free of charge the equipment for an overnight pulse-oximetry study and then provide the report to your doctor? Your doctor needs to send an order for the study to the DME.

But, you have serious enough problems to warrant a sleep study. Pulse-oximetry is a part of the sleep study.

[Julia Maple]

Hey everyone!
Thank you for all the replies.
I am sorry for my late response, I have been to the doctor and some things have happened in the time after my post.

I agree with the sleep study idea that all of you have. I would like to have that done. Some years ago I already asked for it once, but it turned out that my insurance did not cover it for some reason and I had no way to pay such a large amount of money.
Now though, it appears to be covered, so I will ask again.

I have not discussed it with my doctor yet because two other studies will be done in the next two weeks. A neuro-psychological series of testing, to see if my memory problems can be made visible (my tiredness is combined with memory issues). And a 24-hour blood pressure test at home will also be done. So that one will happen during sleep as well. Every 15 minutes a measurement is done, which also includes heart rate. So a 'general' picture of how these two behave during sleep will be visible.
I will see my doctor again in January, I can ask him about a sleep study then. Maybe if the blood pressure measurements show anything abnormal during the night, this could be a good reason to do the sleep study as well. I suspect I might have nocturnal hypo-tension, but am not sure. It will be good to know.
I think I will try to obtain the pulse-oximeter this week, so that I can bring along some of those measurements in January as well, if it shows anything that is worth sharing.

I have now payed attention to my sleep a bit more (in the past week) and noticed two times in which I woke up during the night with a racing heart. I was so drowsy and sleepy that I did not do anything to measure, but later on realized its a bit odd to have a racing heart while sleeping.
I have not noticed it before, so I am not sure if it happens often or not. Maybe it where just nightmares or something like that.

@ChicagoGranny, that sounds interesting. What is a DME? (Language barrier )

@JDS74 , I noticed that there is also one with a wrist band, and a smaller sensor on the finger. That is really interesting. I have also noticed that there are huge price differences, one CMF50F was around 70 euros, and another that I saw was 150 euros. I will have to see if I can find out what is different, both where called CMF50F.
But I think this is the one I will go for, I think they are only useful when there software that makes it possible to really see detailed graphs of the whole night (or day).

[Julia Maple]

I was just wondering..
Can low blood pressure be a problem for measuring with a pulse oximeter? Will it give false readings?

[OkyDoky]

What is a DME? (Language barrier )

@JDS74 , I noticed that there is also one with a wrist band, and a smaller sensor on the finger. That is really interesting. I have also noticed that there are huge price differences, one CMF50F was around 70 euros, and another that I saw was 150 euros. I will have to see if I can find out what is different, both where called CMF50F.
But I think this is the one I will go for, I think they are only useful when there software that makes it possible to really see detailed graphs of the whole night (or day).

DME stands for durable medical equipment and we use that to refer to the companies that supply our equipment in the US.
This link will help you find Sleepyhead that you can use to download your pulse ox results and if you later do get a cpap machine your data capable machine readings. On the same link you will find another one that takes you to a page about Oximeter and Pulse Sensors. That might help you to decide which you want. If possible I would go for the wrist one, I believe the finger sensor may be more stable for turning about in bed. https://sleep.tnet.com/equipment
As far as low blood pressure effecting readings, I think it would have to be critically low where the blood was being shunted from your extremities. Sometimes when fingers are really cold vessels are constricted enough to interfere with the readings but usually false readings are caused by the movement of the sensor.

[kteague]

Getting results from other tests will likely not change your need for a sleep study so why not request one and get some waiting time out of the way? Your mention of waking with your heart racing is a pretty classic symptom of sleep apnea (though not definitive), although your blood pressure issues could play a role. A sleep study will monitor your blood pressure and heart rate overnight. By the time you wait till January to see the doctor then wait to get scheduled, you could be looking at a lengthy total wait time.

While it is anyone's guess what your issues will turn out to be, there are some self-help measures you can take "just in case" you do have OSA and want to try to mitigate the symptoms in the meantime. Some common tips that may or may not be helpful for you are: Sleep on a bit of an incline. Avoid back sleeping. Don't tuck your chin while sleeping.

Good luck with things and I hope you report back even if a sleep study comes back negative. Always interesting to hear outcomes.

[ChicagoGranny]

I would not waste time, energy and money buying and using a pulse-oximeter if I were planning:

a sleep study

and

And a 24-hour blood pressure test at home will also be done. So that one will happen during sleep as well. Every 15 minutes a measurement is done, which also includes heart rate.

You might just confuse things with an amateur pulse-oximetry study.

[OceanBlue]

Hi Julie,

If your insurance covers it, I agree with others to get a sleep study.

I have POTS too as well as low blood pressure. I have some other seemingly autonomic nervous system problems that come and go. Memory problems and feeling horrible in the morning-it feels like a bad hangover every day.

I've had 4 sleep studies that revealed abnormalities, but unfortunately, I have been to 3 pulmonologists so far and no one has been able to help me with these issues. Most refer you to psychiatry for antidepressants, which has been my treatment for years. Other than that, I get told that I have 'fibromyalgia'. The abnormalities are hypopnea/shallow breathing and central apneas, as well as no stage 3/restorative sleep.

I've been to rheumatology-tests are negative. Though I did have 1 positive ANA, no treatment was offered because subsequent tests had negative results. I went to neurology twice. They thought I had Lyme disease, but since the tests came back negative, there is no treatment given. I have been bitten by ticks in the past when working in the fields in a high Lyme area. Regardless, with negative test results, there are no treatments offered. Just test after test and doctor after doctor, and a ton of medical bills.

I've posted here about these same issues and have not heard any answers from this group either, so I'd be eager to hear if you find help for your fatigue. Good luck, I hope you find some help. Keep us posted.