Managing sleep dysfunction
@crashdummy I feel for you. I haven't had situation like that - sleepiness constant - for a long time.
I'd love for us to workshop through it, and try and hunt for ideas.
Probably, generally, I need to leave that your health care professionals. But if you are interested in workshopping on a "shooting the breeze" level, I'm in.
On a different matter - I'll start up a sub-thread now: the idea of different types of tiredness.
Probably not a profound idea to many - but it's one that has helped me lots.
Two of the tireds are: sleepy tired. And body tired. I get leg tired at times, and I get whole body tired at times.
There's at least another 4 tireds.
Does any one else have different tireds?
RatsAreFluffy last edited by
@PaulB restless tired. I need to do something, I can’t do anything tired. This is the kind of tired that so often prevents me from sleeping properly.
Brain tired. Like brain fog, but a flavour of tiredness thrown in there.
@PaulB Last year, I was referred to a sleep centre to hook me up for an overnight stay to get data.
I got myself a booking at a sleep centre a few years ago - was really happy when I had insomnia on the test ...
was crazy annoyed for the following year when they gave me a sleep-apnoea diagnosis and didn't tell me about the insomnia at all.
Long story short - the management they gave for sleep-apnoea is 1000 times worse than the problem, and costs $1500 to boot.
Thank goodness a specialist helped me get of the stupid machine - nasal spray was all I needed, to stop sinus / glandiness. And what a great benefit that is, for more than just getting rid of sleep apnoea.
So a bad interim from that sleep study led to a long term massive positive.
river last edited by
@PaulB I had a similar experience when I had a sleep study. I didn't sleep ALL NIGHT LONG (thanks to the exertion from getting to the appointment and back, and the discomfort from all the equipment). I go into the clinic the next day and get told I slept perfectly and just have mild sleep apnea. What?! Then I'm told the insomnia is actually a psychological phenomenon where I'm sleeping but don't realize I'm sleeping.
I've since learnt that a) people with CFS can have EEG graphs that make them appear to be asleep when they're actually wide awake, and b) if my sleep quality is very very poor, I will just experience short periods of amnesia between longer periods of full wakefulness, instead of "sleeping". I think both of those things happened that night.
Fortunately, I wasn't pressured into any fancy equipment, as my specialist didn't think my apnea was bad enough to warrant it.
@crashdummy Just as am example of a different outcome (and I'm not saying this relates to your situation, and it clearly doesn't to @river 's (that sleep study sounds all sorts of unpleasant ) I had a sleep study done and it turned up sleep apnea, and it was treatment for that, that got me my capacity to read a bit back. My sleep apnea symptoms weren't "normal" either (ie, I wasn't sleepy during the day), but treating it did help (although I still sleep badly - just not quite as badly as before).
I do like (and empathise with) the "fed up tired"
Do you use a cpap machine Dave?
Like you say, something like a cpap machine can be wonderful for some.
It wasn't for me personally - I had a description of what it was like, but I've removed it, as - again - it could be a good thing for some, and I don't want to unnecessarily prejudice that.
@PaulB Aye, a CPAP machine gave me my reading back, and a tiny bit of energy as well (marginal in an ME/CFS context, but as we all well know, even marginal gains in an ME/CFS context are welcome!) That said, as per your experience, it's not for everyone, and there seems to be more than a few different varieties of sleep apnea, and I definitely wouldn't recommend people jumping to get a CPAP machine (not cheap) speculatively. I'm glad your situation could be resolved without it
I'd obviously prefer not to have the machine on (I'm not sure too many people would say sleeping with a mask strapped on and higher pressures in their airways adds to comfort!) but I'm lucky in that for me it doesn't really bother me too much, and the benefits well and truly outweigh the costs.