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cammee

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Did you feel better for the extra sleep?

My 16 year old daughter (POTS, EDS) has had a couple of mega-sleeps. Last time she slept for most of three days, just waking occasionally for food and drink. On the fourth morning she woke up feeling great, without her usual dreadful morning nausea and brain fog. It was the first time in 18 months that she had felt really well.

We had a lovely day together, then the next day she was poorly again.

The only way she can normally avoid the morning nausea is by not going to bed at all. She has done this a couple of times when she has needed to be functioning in the morning.

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Yes, I've been like this for the last few weeks, especially this week. I just want to sleep but until new years eve, I was only getting a few hours at a time. Once I finally was able to sleep on NY eve (long nap and asleep before 9 pm-I missed the ball drop :(), I felt better the next day, until I tried doing stuff again. When I get this fatigue it incapacitates me more then the bad muscle spasms I had the week before. The only way I'm able to shake that sleepy overwhelming fatigue for me is to just do nothing and rest and pray for a long nap or long nights sleep. If I can get enough sleep in then the spell will usually pass. Since my treatment plan has been working, I don't get these spells as often as I used too. They could last for weeks in the past.

I haven't figured out the triggers, maybe female cycles, I did just find out the my FSH is finally at menopause levels, even though I'm still getting it. It will be interesting to see if I feel better once I stop getting it for good.

I've learned to let my body sleep if that is what it wants, sometimes 16 hours is just what we need.

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This is my biggest issues but it is ongoing....severe daytime hypersomnia. And if I feel like I need to sleep and I try ti stay awake I literally feel like my body will collapse and shut down. It is a different feeling from presyncope. I sleep a minimum of 12 hours everyday and most days there has to be an additional 2-3 hour nap in addition to that. There are also episodes when I will sleep 20 hours a day broken up into 5-6 hour chunks.

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I don't sleep because then I cant sleep at night but I have been extremely tired the past 2 weeks. Do you move around at all ? all I do is sit at my computer because I have nothing else tod o but I do exercise everyday from 2 to 3 I do the cardio workout on the wii and I play just dance and that hour I exercise I feel more awake. I am thinking about doing a song or two on just dance every hour maybe that will help me be more energized maybe if you have a wii you can too or you can look up dance videos on youtube.

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I hate the desire to sleep during the day... When you take midodrine, you're not supposed to do that, and they always tell me to avoid sleeping during the day so I might sleep during the night. Usually after a big deal or outing, I will skip a dose or two to try and get some extra rest, because I hate feeling like I'm denying my body what I think it may need to function better, but I hate skipping my meds.

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