MandyBrook Posted March 30, 2012 Report Share Posted March 30, 2012 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 Quote Link to comment Share on other sites More sharing options...
MandyBrook Posted March 30, 2012 Author Report Share Posted March 30, 2012 I'm sorry to have been taking up so much of the forum wall but I am very discouraged right now. Quote Link to comment Share on other sites More sharing options...
puppylove Posted March 30, 2012 Report Share Posted March 30, 2012 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))) Quote Link to comment Share on other sites More sharing options...
MandyBrook Posted March 30, 2012 Author Report Share Posted March 30, 2012 Puppy love-- Does this happen to you all the time or just during a flare? Quote Link to comment Share on other sites More sharing options...
MandyBrook Posted March 30, 2012 Author Report Share Posted March 30, 2012 And, thank you for the reply! It's been a very difficult morning. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 30, 2012 Report Share Posted March 30, 2012 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 Quote Link to comment Share on other sites More sharing options...
MandyBrook Posted March 30, 2012 Author Report Share Posted March 30, 2012 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 Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 30, 2012 Report Share Posted March 30, 2012 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 Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 30, 2012 Report Share Posted March 30, 2012 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! Quote Link to comment Share on other sites More sharing options...
puppylove Posted March 30, 2012 Report Share Posted March 30, 2012 For me it only happens during a flare. Quote Link to comment Share on other sites More sharing options...
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