Goodr189 Posted June 8, 2016 Report Share Posted June 8, 2016 Not sure if it's stress or what but I felt "off" last night and now I haven't been able to get out of bed all day due to tachy. (130+) Should I be worried? Will this go away? Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 8, 2016 Report Share Posted June 8, 2016 Hi there! I have bad days when I can not do anything and am in bed or on the couch. They aren't permanent. Hang in there! Quote Link to comment Share on other sites More sharing options...
yogini Posted June 8, 2016 Report Share Posted June 8, 2016 It's always a good idea to check in with your doctor for unusual symptoms. If your HR is 130+ lying down, he may want to give you medication (such as beta blockers). That being said I think it's very common for people with POTS to spend a day or even several days in bed from time to time when our symptoms flare up. This can happen for any reason, but often happens for certain triggers - for me it is when I overexert myself, have too much alcohol and/or around the time of my period. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 8, 2016 Report Share Posted June 8, 2016 Yes this is not unusual. IV fluids seem to help some patients and you may want to talk to your doctor about that. I agree w yogini that if these are new sympotms (130+ lying down) it would be important to talk to your doctor. Quote Link to comment Share on other sites More sharing options...
Goodr189 Posted June 8, 2016 Author Report Share Posted June 8, 2016 My laying down HR was in the 80-100 range so I wasn't too concerned there. It just that whenever I got up to pee, (with all the water/salt intake it was a lot), my heart rate would skyrocket and make me feel dizzy and sick to my stomach so I would end up right back in bed after. Not sure what triggered it but I think it may of been something I ate that morning. I have a suspicion that certain foods are triggering POTS symptoms though I haven't quite figured it out yet. Thanks for the reassurance though Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted June 9, 2016 Report Share Posted June 9, 2016 Same here. Hormones at the moment and recovering from my daughters grad weekend and huge barometric pressure drop. I get up to go to bathroom... Try to pace myself and sit at table with Fam or on the porch with dog... Yesterday and Today were both 150+ hr days. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 9, 2016 Report Share Posted June 9, 2016 One thing I did not realize when I had severe symptoms similar to what you are describing is that excessive lying down may make your symptoms continue to get worse or anyway doesn't help. You may want to try to at least sit up if not trying standing a little more frequently, as uncomfortable as it is (as long as you are not in danger of fainting and hurting yourself). hope you (and BigSkyfam too) will be feeling a lot better soon. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted June 9, 2016 Report Share Posted June 9, 2016 Bigskyfam, My oldest daughter's graduation 2 years go was the turning point in her health. Get lots of rest! Quote Link to comment Share on other sites More sharing options...
yogini Posted June 10, 2016 Report Share Posted June 10, 2016 I agree with MomtoGiuliana. Lying down makes your body less used to being in an upright position. Also, sometimes right after you stand up, your HR goes up a lot and then settles down after a few minutes - so if you are measuring it just for going to the bathroom this may not be an accurate measure. Quote Link to comment Share on other sites More sharing options...
roxie Posted June 21, 2016 Report Share Posted June 21, 2016 If lying down all the time is bad for us, how can we learn to sit up more? I find simpyl sitting up to be exhausting. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 21, 2016 Report Share Posted June 21, 2016 Roxie, The theory is to do it gradually. If you are laying with two pillows behind you, add a third for 2-3 days, then a fourth for a few days until your upper body is upright. Then build up the time you can have your feet on the floor the same way....5-10 minutes at a time (even slower if your a fainter.) It's like desensitization to the upright posture. Also, it is often suggested to elevate the head of the bed on blocks/bricks so the body isn't lying so flat at night. Some days it's easier than others. I still have some days when I have to keep my legs elevated and not sit with my feet on the floor. Quote Link to comment Share on other sites More sharing options...
yogini Posted June 21, 2016 Report Share Posted June 21, 2016 Yes, you have to push past the fatigue. It is really hard but if you keep doing it, you will improve. Elevating the head of the bed is a great idea. You can also sit and put your feet up. Quote Link to comment Share on other sites More sharing options...
roxie Posted June 21, 2016 Report Share Posted June 21, 2016 Katybug, I like the pillow idea but is there any other way? I also have EDS and an 0-c2 fusion. Surgery really threw me for a loop and I've found that since fhen I have not been able to sit in a recliner or be "reclined" like if I only had a few pillows because of the way it pushes my neck. I lie on my sides now. Quote Link to comment Share on other sites More sharing options...
theabrodrigue Posted June 21, 2016 Report Share Posted June 21, 2016 So sorry you're feeling crummy, Goodr189. I've had many days like that after a few pretty busy days before. One thing that helps me feel better when I have to get up and move is to pump my legs and contract my stomach muscles before I sit up. This helps me pump my blood around a bit and let my body know I'm about to move around. Then I make sure I sit for at least a minute before I get up and walk anywhere. Even on my worst days, it helps me feel more stable and not so wobbly. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 21, 2016 Report Share Posted June 21, 2016 Roxie, Raising the head of the bed will help. I also have c-spine instability and fused c4-5. I have a wedge pillow that I use under my regular pillows which gives 7" of graded elevation. The wedge is long enough that my whole torso is on it so I can sleep on my side. I also have a neck collar that I sometimes have to sleep in to keep my neck in proper position. Quote Link to comment Share on other sites More sharing options...
andybonse Posted June 22, 2016 Report Share Posted June 22, 2016 Same started happening to me mate, hr would go to 100 laid down normally its 50-60 and then if I stood to pee or whatever it would shoot to 150-170 and id get angina, and took a few days to go back to normal laid in bed! mine mostly happened if I got scared or something triggered it off. since been upright more and on florinef I haven't had an episode of that for 2+ years!! Quote Link to comment Share on other sites More sharing options...
roxie Posted June 22, 2016 Report Share Posted June 22, 2016 Would an adjustable wedge be different than an electric recliner? Katybug, I think it's only a matter of time before I need c5-7 fused, I have an mri to check if it's progressed next week. I had suxh a tough time with 0-c2 though he's rewlly going to have to convince me that theettrt fusion is good idea! If theres anything I can do to avoid it I will, thankfully my NS alwys says "ideally we wont have to do surgery" Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 22, 2016 Report Share Posted June 22, 2016 The wedge feels different to me than my stepfather ' s recliner. I can't sleep in the recliner (which is interesting because I recovered from the fusion at their house in the recliner for the most part.) I will also say that because of the EDS, some nights, I have to completely rearrange the pillow situation. I probably have about $700 worth or orthopedic, memory foam, hard, soft, wedge, flat, etc pillows on my bed and use a different combination of them on any given night. But I do try to stay on the wedge most nights if I can because of the POTS. Learning to sleep with the elevation is an adjustment but it was doable for me. I don't actually feel very good when I wake up if I sleep flat....lots of nausea and weakness which I think is my body having a hard time adjusting from completely flat to an upright posture. Quote Link to comment Share on other sites More sharing options...
roxie Posted June 23, 2016 Report Share Posted June 23, 2016 Katybug, are you able to sit up all day? Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 23, 2016 Report Share Posted June 23, 2016 Kind of....I can never go all day with my feet on the floor. I also have daytime hypersomnia, so the time that I'm awake, I can be in a sitting position and/or sitting up with my feet up, but I do take 2 naps because of extreme fatigue, not tachycardia/presyncope. I generally nap on my couch, so I'm at about a 45* angle with my torso when I nap which is more elevated than when I sleep in my bed at night. Quote Link to comment Share on other sites More sharing options...
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