Calling all Thalamic stoke brothers & sisters

Good luck! Keep me updated how it goes x :blush:

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Much to my surprise Sammy, despite feeling tired, I couldn’t fall asleep in the afternoon. I can’t remember the last time I didn’t sleep in the afternoon and sometimes more than once. Sleeps which would leave me feeling groggy for 15 mins after at least.

I also watched TV till late last night, often fall asleep doing that but not this time.

So even with feeling tired and really fairly tired, the change has been instant after all.

Unlike the majority of apnea sufferers, I obviously have the stroke fatigue element as well and this is perhaps the first time the apnea element is being removed from the stroke part.

The stroke tiredness feeling is going to take some getting used to. Yesterday I would estimate I was awake 2.5 hours more than an average day. So if I’m typical (only 1 day so who knows) solving apnea would give 912 hours active life in a year. It’s definitely worth checking. That’s the equivalent of 57 16 hour days extra a year which otherwise would be spent asleep.
Cheers
Nige

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That’s great news! Thanks for letting me know, I hope this continues for you! :blush: x

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That sounds really positive already. Here’s to enjoying all those extra awake hours.

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Stayed awake this afternoon as well. It was a struggle but that’s two days now.

The initial consultation with the GP will likely consist of

  • a blood test
  • a standard questionnaire with has from memory 8 scenarios where you assess yourself on how likely you are to fall asleep. Depending on the score, then a referral.
    The questions are fairly straightforward and the only obvious complication is if you haven’t been in the scenario since your stroke. For example one of the questions concerns how likely will you fall asleep on a hour long trip in a car. You grade the questions between 0 and 3 points. 0 is you would not fall asleep and 3 is that you are certain you would.
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So “yes no maybe yes, maybe no” ¡!

:slight_smile:

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Just as a summary update a few days further on.

First 9 days I fell asleep just once in the day. Still felt tired late morning and in the afternoon but not enough to fall asleep.
Following days, roughly a week, I have fallen asleep in the afternoons. My thought is that it might be quite difficult to separate post stroke fatigue and apnea fatigue.

One minor downside, need the mask whenever you fall asleep to make the sleep fully refreshing.

Another downside is that I have developed a pressure sore on my nose from the top of the mask. Seems odd given how soft the mask is. Currently covering it with a soft pad and elastoplast. Sent an email to the NHS sleep clinic late one night. Great service, answered in few hours, had a reply at 4am, they are posting me an alternative mask which fits over the mouth only.

One positive is there is an App and Bluetooth connection to the cpap box so you can see a decent amount of info on what has gone on. Can’t remember this being mentioned.

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I think it might be difficult to tell the 2 lors of fatigue apart but hopefully in time the apnea fatigue will diminsh and you’ll feel loads better for it.

Hope the pressure sore heals quickly & the neq mask is better.

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Got a new mask and that seems to have worked well. Certainly taken the pressure off my nose.

Thought I would share a couple of points

  • sleep apnea is linked to all manner of health issues, a number are serious. If in any doubt, get it checked out.
  • you may see an AHI score mentioned. This is the number of times on average that your airways become blocked in an hour. The is obstructive sleep apnea.
  • what is not spoken about as much is central sleep apnea which is when your brain doesn’t send a signal to trigger you to take your next breath.
  • you can see both scores on the cpap machine
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I had a biPap after ventilator removed the first time. It made me feel safe, so perhaps my joy at having it was caused by having less anxiety. BiPap differs from CPAP by having higher pressure for breathing in, lower for breathing out. I have mild COPD, so breathing out is harder for me. The BiPap also helped me to remember to breathe, or rather my brain to remember, by having that force of air inward at correct intervals. I probably should also go ahead and ask for testing. I have been asked in the past if I were interested, but had too many other things going at the time. Now that I am done with 3 times per week PT, OT, ST and VT, I think I can find the time. Also, here we have pulse/ox sensors that are held in place by the band aids you are speaking of, so I wonder why it wouldn’t work. perhaps it holds the clothspin looking part open if put on too tightly? who knows?

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Is that Physical Occupational Speech and Vocational?

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