So sleepy now I'm sleeping

[skippydoo]

I had a terrible two years, diagnosed Fibromyalgia, depression, anxiety, health related anxiety, ibs, paplitations, high blood pressure etc etc. Guess what, they then found I'd got UARS after I kept asking for a sleep study at least 3 times over 6 months. Been on CPAP a few weeks and feel nearly normal again!!! But so tired, nice tired though. Just laying around all day feeling relaxed, but tired. Will this pass?

[Diablode]

I had a past sleep study suggest UARS because of high arousals, however they used thermistors, which are incapable of linking the arousals to breathing events. My current doc is going to put me in the lab again specifically looking for it.

But anyways... Mind sharing exactly how you were diagnosed? Was it a high RERA count? What were your symptoms? Do you suffer from nasal congestion?

As for how your feeling now, I assume you were tired before, just differently? What can happen in UARS is the constant brain activation at night keeps the brain activated during the day, leading to a state of hyperarousal. This can manifest as anxiety, tension, insomnia (combination of being tired but having insomnia is hell ) So when you say you are tired but relaxed, I think you're describing the passing of the hyperarousal state, so yay . Of course without that hyperarousal to cover up some of the tiredness you might be feeling even more tired. Did you have insomnia problems before? Have they improved any? Are you making sure to get around 8 hours ( or even more) of sleep so you can recuperate? Now that you have quality down, you need to concentrate on quantity. It WILL pass, provided you are getting proper treatment, hang in there!

[chunkyfrog]

Skippydoo:
You are off to a very good start. You are just beginning to help your body heal.
The fact you already feel better is a good sign; much of the healing power of your therapy
is being directed at first to help things you may not even be aware of. Your body has suffered
numerous indignities for years, and it often takes quite a while to feel 'great' again.
Even if symptoms of your other illnesses do not change radically, your strength to deal with them
should improve greatly.
Welcome.

[Lizistired]

My first two week I wanted a nap about 9 AM every day. When I could, I took them. Just put the hose on. I think it's your brain figuring out it's OK to sleep. Catching up is a good thing. It passed.

[skippydoo]

I had a past sleep study suggest UARS because of high arousals, however they used thermistors, which are incapable of linking the arousals to breathing events. My current doc is going to put me in the lab again specifically looking for it.

But anyways... Mind sharing exactly how you were diagnosed? Was it a high RERA count? What were your symptoms? Do you suffer from nasal congestion?

As for how your feeling now, I assume you were tired before, just differently? What can happen in UARS is the constant brain activation at night keeps the brain activated during the day, leading to a state of hyperarousal. This can manifest as anxiety, tension, insomnia (combination of being tired but having insomnia is hell ) So when you say you are tired but relaxed, I think you're describing the passing of the hyperarousal state, so yay . Of course without that hyperarousal to cover up some of the tiredness you might be feeling even more tired. Did you have insomnia problems before? Have they improved any? Are you making sure to get around 8 hours ( or even more) of sleep so you can recuperate? Now that you have quality down, you need to concentrate on quantity. It WILL pass, provided you are getting proper treatment, hang in there!

Cheers for the advice, my study involved CCTV, blood gas, ecg only. My blood gas was low while I slept apparently. When I was ill I slept from 11pm to 8am like clockwork, never did this before, maybe due to the SSRI late evening. I still seem to wake at the moment quite a lot, mask leaks and dry mouth I think. The cognitive improvement is amazing. I felt really down having conversations with people and not being able to find the right words, and forgetting what I was doing just after I got up to do it, more or less overnight this vanished.

The sleep tech was really surprised at my compliance, 8 mask hours per night after the first night! I must have needed it!

[skippydoo]

Skippydoo:
You are off to a very good start. You are just beginning to help your body heal.
The fact you already feel better is a good sign; much of the healing power of your therapy
is being directed at first to help things you may not even be aware of. Your body has suffered
numerous indignities for years, and it often takes quite a while to feel 'great' again.
Even if symptoms of your other illnesses do not change radically, your strength to deal with them
should improve greatly.
Welcome.

Cheers its nice to hear from people with insight. Its daunting just talking to Doctors about it as they seem to filter out most of what I say. Hoping for continued improvements. Thanks

[jen4700]

My first two week I wanted a nap about 9 AM every day. When I could, I took them. Just put the hose on. I think it's your brain figuring out it's OK to sleep. Catching up is a good thing. It passed.

ditto - I was very tired my first month. It was a different kind of tired, just as you describe. If you can, sleep when you want. Always use cpap. It will pass.

[jweeks]

Guess what, they then found I'd got UARS...

Hi,

There are a few of us in the forum that have UARS. I started with OSA, and due to losing weight, the OSA is essentially gone. However, I started to feel poorly again, and a new study found that I had UARS. That is a lot harder to treat since it isn't fully understood. The net-net is that auto machines don't effectively treat UARS. Since the RERA doesn't produce normal OSA events, the auto machines don't know to ramp up the pressure. Also, some sleep clinics and sleep techs are not familiar with UARS since it isn't an officially recognized disease yet. That can cause you to get incorrect treatment plans.

The way that I dealt with my UARS is that I started experimenting with different pressure levels. I found that I felt horrible if I ran at the lower pressures that my machine picked using auto mode, despite having an AHI of nearly zero. I changed to a fixed pressure, and moved it up a few centimeters every night until I found a level where I felt good. Then I backed the pressure back down a little at a time until I felt bad again. That gave me a bracket of pressures that I could run with. The end pressure turned out to be just slightly higher than what I needed when I had OSA as my primary issue.

While this worked for me, I have no idea if it will work for someone else. I am optimistic that if your doctor wants another study done, then he (or she) has some understanding of UARS and is going to come up with a good treatment. If not, then you might need to look for a doctor that specializes in UARS, or take control of your own treatment.

-john-

[skippydoo]

Guess what, they then found I'd got UARS...

Hi,

There are a few of us in the forum that have UARS. I started with OSA, and due to losing weight, the OSA is essentially gone. However, I started to feel poorly again, and a new study found that I had UARS. That is a lot harder to treat since it isn't fully understood. The net-net is that auto machines don't effectively treat UARS. Since the RERA doesn't produce normal OSA events, the auto machines don't know to ramp up the pressure. Also, some sleep clinics and sleep techs are not familiar with UARS since it isn't an officially recognized disease yet. That can cause you to get incorrect treatment plans.

The way that I dealt with my UARS is that I started experimenting with different pressure levels. I found that I felt horrible if I ran at the lower pressures that my machine picked using auto mode, despite having an AHI of nearly zero. I changed to a fixed pressure, and moved it up a few centimeters every night until I found a level where I felt good. Then I backed the pressure back down a little at a time until I felt bad again. That gave me a bracket of pressures that I could run with. The end pressure turned out to be just slightly higher than what I needed when I had OSA as my primary issue.

While this worked for me, I have no idea if it will work for someone else. I am optimistic that if your doctor wants another study done, then he (or she) has some understanding of UARS and is going to come up with a good treatment. If not, then you might need to look for a doctor that specializes in UARS, or take control of your own treatment.

-john-

I had an s9 auto for a week to find my pressures. It averaged out at 10cm for my airways, so they gave me a Devilbiss Sleepcube Standard set on 10cm and it seems fine. I got the clinician menu and tried it on 12cm which felt good too, apart from the mask leak and noise. 2 weeks into treatment and hoping for good things. Friends who have OSA told me 2 months in makes a BIG change in how you feel. Thanks