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Sorting Out My Episodes. Forced Sleep Anyone?


DoozlyGirl
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Peace,

The fact that you can't move or react for a short time may be an indication of narcolepsy. I was sent for the sleep studies to rule out narcolepsy and they did but I had researched it quite a bit while waiting for my results. They have good treatment for this these days so it might be worth investigating.

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glad to know I am not the only one ;) but hate that you guys are experiencing it too! Peace I know what you mean.....its like after awhile the sedation feeling wears off and I am completely awake again......what the heck is that all about and what the heck is causing it? I know its not a presyncope episode and I don't think its a sugar issue the only thing I am thinking is it could be a mast cell thing? but if you guys get them too maybe not.......all I know its freaky and I want to know a cause for it?

Bren

Bren,

Ya, it's not a presyncope thing for me either at one point I did think it was sugar related, but I don't know anymore. These episodes have picked up for me recently and **I also reduced my Florinef dosage from 1/2 tab to 1/4 exactly four weeks ago - so I'm wondering if that is playing a role here. I have been also feeling some discomfort in my neck (feeling the need to stretch/crack it; and some nasty headaches) - possible inflammation???

Peace,

The fact that you can't move or react for a short time may be an indication of narcolepsy. I was sent for the sleep studies to rule out narcolepsy and they did but I had researched it quite a bit while waiting for my results. They have good treatment for this these days so it might be worth investigating.

Katie,

Wow, I did look up narcolepsy and it's eerily familiar. My "naps" are brief and I do have really vivid dreams (so I must be going into REM immediately). I also looked up Pots and narcolepsy and very quickly found people who have been diagnosed with both. I don't experience the sudden sleep, though, when people fall asleep while doing a task, etc. It's about a year wait to have a sleep study done...

Did you have those same symptoms when you had it ruled out?

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WOW Peace that is weird that you also reduced your florinef and are experiencing these episodes. Mine have definately come on fast and furious since lowering the florinef.....I am wondering if it could be an adrenal thing? I was told to lower the florinef because i was showing pre-cushings syndrome....so now I am wondering if being on the florinef so long has somehow messed with my adrenal function?

Bren

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You mean this is something I was meant to fuss about? I've been getting it for years. I'm almost entirely housebound and have to spend a large part of each day in bed, so it's not as big a deal for me. Though it's inconvenient if it happens when a support worker is here, as it means the support session is pretty much going to be a loss.

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I started these episodes before I was on florinef so I know mine isn't related to that Med. My symptoms were basically just times ((several times a week) when I just felt like I was going to collapse, not faint but collapse, if I didn't sleep. Like someone early in this thread said...it was like being given sedation and trying to fight it to stay awake. I stay asleep for a long time though, 2-3 hours if I'm not disturbed. I do have vivid dreams and nightmares (sometimes night terrors) but ususally not during these daytime attacks, only when I sleep at night. And I get terribly cold before hand and no matter what I do I will not warm up unless I sleep. My sleep study showed very fast sleep onset but no REM (they only let you sleep for 15 mins. if you fall asleep). So with no REM they give you a hypersomnia but no narcolepsy dx. I had one follow up with the sleep doc that works at the center where I had my testing and he (of course) dx'ed me with depression. What a crock! Later that day my cardio and I met and she said she thinks its from my heart working so hard with POTS which I agree with and I think my mcas probably has some contribution too since I am at the point where even taking showers is triggering my mast cell reactions. I think between the two my body sometimes has nothing more to give. But some of the symptoms the rest of you describe are a little different than mine and do sound more like potential narcolepsy (short sleep times, not being able to move). There was actually just a long thread on the EDS forum I belong to about this and it seems like LOTS of those folks have either hypersomnia or narcolepsy dxs too.

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I have been having my episodes since 2007....just came on out of the blue but for whatever reason reducing the dose of florinef has made them much worse......I have also noticed during some of these episodes I get a really sudden dry mouth and severe leg cramps too....I thought maybe dehydration but my fluid intake seems okay....it is a mystery.....I know recently I was diagnosed with an enlarged liver too and I am terrified that this could be a tie-in somehow? This is one of those times when I worry that I am ignoring something and just attributing it all to dysautonomia :(

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Hey Katy :)

No I haven't been tested for any infections. At my last appointment the specialist just said my liver was enlarged and that I was showing signs of Cushing's so he wanted me to start titrating the florinef......but now with everything else I wonder if there isn't something else contributing...... I was shocked that 1/4 tab of florinef could cause that much damage but he said some people are more susceptible over time........but now with these sleep episodes I just don't know what is going on.... think it may be time for me to see an endocrinologist........

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Yes. I get this too, maybe a few times a week. When it happens, it feels much different than pre-syncope. My HR slows, I get really cold (usually I'm overheated), get goosebumps, low muscle tone, and my eyes start to shut. I have to sleep it off for a few hours and then usually feel better (almost like my body needs to re-boot). I'm not sure why it happens either. Unlike my 'regular' pre-syncope episodes, I haven't found many triggers except perhaps eating too much.

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I'm trying to think whether these episodes coincide with the ones where I need a nap and happen to be really cold. So I pile on the cardigans and blankets, curl up, fall asleep quickly, and then wake an hour or two later feeling breathless and horribly overheated.

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