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A Few Questions


MandyBrook
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Hey Everyone :)

I am in a relapse at the moment and whenever I flare I have a very hard time sleeping. I'll fall asleep at night only to awaken 2-3 hours later with my heart racing, hands burning, nauseated, inside of chest feels cold. When I finally muster up the courage to attempt to fall back to sleep I will fall asleep on for seconds to minutes to be rudely awoken by racing heart, nausea, hands burning, and the inside of chest feels cold. I even took some phenergran this morning which has helped with my nausea somewhat and made me tired but every time I fall asleep I wake right back up. Does this sound common to any of you?

Also, how long does the average flare last?

Thank you!!

Praying for us all :)

Mandy

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This happens to me too. Right when I start to doze off... Are you taking melatonin? That helped me a little. 5mg helps. I didn't notice much of a difference with anything less than that. Sorry your feeling so bad- not being able to sleep is terrible. (((hugs)))

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Hi Mandy,

This happens to me in a flare (and occassionally when I'm not in a flare). I take my Phenergan at night about 1/ hour before I go to bed so I can get any benefit I can from that since it has a mildly sedative effect in addition to helping the nausea. I don't have the burning hands (although I do have extreme hot flashed with it) and I don't have the cold chest feeling. I believe mine are adrenaline surges. When it happens, I try to relax in a meditative way while still in bed or I read. I try to keep my mind off of what I am feeling as thinking on it seems to make it worse for me.

As for how long flares last, that's a loaded question. Days, a week, months...I really feel that every flare is different.

Hope you feel better soon.

Katie

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Thank you for the reply Katie!! It's tough to not feel alone when going through a flare. How long do your flares usually last? How much time is in between them? And this may sound a little forward and I mean it with no disrespect but when you're not in a flare what is your daily life like?

Thank you!!!

Praying for all of us!!!

Mandy

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Mandy,

It really depends on how you define my flares. I haven't been able to work since Nov 2010. But, if I manage my activity carefully now, I usually have 2-3 hours each day that I can be productive...run errands, docs appts, walk dog, meet a friend for coffee or lunch. I described it to my friend the other day as being on weight watchers with my time/energy. If I use too many points today, then tomorrow I may not have any points available. But, I also have some inflammatory issues going on too so we think my POTS is part of a larger problem. Now that I have learned approximately how many "points" I have, I am able to manage myself in a way that at least allows me a bit of freedom each day.

Hope you feel better soon,

Katie

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Mandy, this was my life every day for years without treatment. It still happens on occasion, anyway, but now that I'm on my Cpap, and beta blocker, I am much better. I would be awake for hours in the middle of the night constantly exhausted, so I so understand how you are feeling...my heart would wake me up with tachycardia, and irregular heart beats, I would sweat perfusely, my chest would hurt, constantly nauseated, and then I was wide awake. I would read, write poetry, and even get on Face book!! Then I would finally go back to bed...I have sleep apnea, too. Maybe you should ask for a sleep study to be ordered by your doctor. Supposedly a third of us have it...Praying for you. I am not the energetic person I used to be, but I am functional, but still fatigued, and my insurance won't authorize Provigil, so I just had my yearly blood drawn yesterday, and asked them to check my vitamin D levels. Most everyone is deficient in D3, and that also can cause fatigue, so I'll see if supplements will help me. I'm like Katie; afternoons are best for me when I can get a few things done, but I couldn' t hold a job right now either; I only go a short distance from home, if I go out, and I know right away, when I have reached my limit, and listening to my body, immediately go home. Some days I stay home all day, because I know it is the best thing for me. I hope you start feeling better soon!

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