I Wonder How Many Of Us Have A Sleep Disorder

Polls relevant to Microscopic Colitis, and related issues, can be posted here, to allow for the collection of data that might help to shed some light on this disease, and it's treatment options.

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Do you have a sleep disorder?

No.
26
31%
Yes, but I had it before my MC symptoms began.
38
45%
Yes, and it seemed to begin after my MC symptoms became noticeable.
19
23%
Yes, but it developed after my MC symptoms were already in remission.
1
1%
 
Total votes: 84

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PixiGal
Posts: 10
Joined: Thu Jul 07, 2022 7:23 pm

Re: I Wonder How Many Of Us Have A Sleep Disorder

Post by PixiGal »

It’s been a long while since a post has happened on this thread, so I’m not sure if it’s anything that anyone is remotely interested in anymore…hmm..
Anyway, it was interesting to read the comments associated with this poll, as there was a wide variety of views. There are lots of different types of sleep studies, and many of the screening tests don’t identify some types of sleep disorders relating to breathing, or brain function (or for some other bodily dysfunctions that can directly or indirectly impact on functional sleep). The diagnostic tests are a different story - they are specifically looking for causes: in brain patterns of function throughout the stages of sleep, and sometimes other areas associated with brain dysfunction that is presumed to affect sleep (depending on the areas of brain being monitored/leads in use); or with regard to functional breathing (independently checking chest movement, diaphragm activity, airway lumen, and then synchronicity of these with each other, along with brain stage of sleep). Oxygen is monitored throughout in both screening and diagnostic studies, which is then also correlated to the brain activity (including sleep stage) and bodily functions that are being monitored.
Not everyone has a sleep disorder who gets tested (however usually based on the specialists’ purpose for referral is due to examination of the patient and other prior tests, which indicate a breathing/sleep problem, hence why the send people to a sleep lab to either rule it out, or to determine if it’s present (screening), and then to determine what it is (diagnostic)). So this is why so many people come from a sleep lab as “positive” in some way or other. There are a large amount of treatment options designed to target specific disorders associated with sleep, and it takes a very skilled lab to record precision data, a very skilled sleep tech to analyse the data, and a very smart doctor to interpret the results because many sources of data go towards the formulation of a diagnosis and these data are open to interpretation due to being analysed codependently. So, then a skilled doctor needs to refer the patient for the correct treatment. Majority can be for obstructive sleep apnoea (which is the most common type of disorder) however this can then illuminate underlying, more complex sleep issues (kind of like is it the chicken or the egg that comes first here).
The doctor and equipment suppliers need to ask about many other seemingly unrelated health issues to also factor this in to the analysis and prescriptive processes, as other health issues can impact both on the sleep disorder and the provision of the correct equipment.
Anyhow, the long winded above is just to outline that if there are a bunch of different processes of illness in the body, it’s very challenging to determine the right course of action in terms of treatment, and in what order. Like many have said, changing one aspect of health often impacts on another, however determining the direction of influence can be a difficult task.
Just a thought, while I enjoy counting the tiles in my bathroom yet again 😉
Upholding equity, encouraging kindness, and being brave enough to smile and have an open heart when you’re challenged…a work in progress that is worthy of persistence.
User avatar
PixiGal
Posts: 10
Joined: Thu Jul 07, 2022 7:23 pm

Re: I Wonder How Many Of Us Have A Sleep Disorder

Post by PixiGal »

PS: I have neurological injury and complex neurological degenerative processes in play in addition to LC (which I’ve probably had since I was a child, back and forth from flare to remission over the years), which has resulted in the need for a non-invasive ventilator to support a non-death state while I sleep (nerves control the diaphragm - which is the primary muscle on the clock while you’re asleep to keep you ventilated - and if they are broken, without the signal getting from the sleep centre in brain to diaphragm, I suffocate within a couple of mins of falling asleep). Before the vent, I would doze while sitting for a few seconds probably up to hundreds of times in a 24h period so I didn’t suffocate - I didn’t lay down to go to sleep as I would go blue and my then partner would have to wake me so I would breathe. This went on for a couple of years till I felt I was going to expire from brain damage of lack of sleep (I’m not kidding here), and the damage it was doing fo my body. Finally a decent sleep physician put me on a vent, and I could sleep. Each screening study I was sent for did not identify the problem, because they did not recognise that my inability to fall asleep was driven by my desperation to stay awake to maintain breathing using accessory muscles of breathing. They wanted to give me sleeping pills thinking it was insomnia (failing to note that my diaphragm wasn’t working) which would’ve killed me in a matter of minutes.
Anyhoo, I’m often attached to this $10,000AU device as it’s my lifeline to survival (I have installed a battery backup in my house to cover the circuits powering the vent so a power failure doesn’t end me inadvertently..hehe - gotta think laterally sometimes). Fun and games 😎
Upholding equity, encouraging kindness, and being brave enough to smile and have an open heart when you’re challenged…a work in progress that is worthy of persistence.
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