Janey Posted October 26, 2009 Report Share Posted October 26, 2009 This may be quite an obvious question, but it's not clear to me. If you guys get back pain/stomach pain/headache/nausea, is it ALWAYS worse standing up rather than lying down? This is the defining feature of my illness - that what I feel mildly while lying down is what I feel severely when standing up. Is it all about blood flow? I was told my constant nausea (worse when standing up) was mainly to do with having stretchy intestines because of EDS, but if it gets worse when I'm upright, sure;y it's something to do with bloodflow? Or a combination of EDS and blood flow? Quote Link to comment Share on other sites More sharing options...
Janey Posted October 27, 2009 Author Report Share Posted October 27, 2009 Anybody got any idea about this? Is it an obvious answer or am I the only one this happens to, despite taking salt pills? Still feeling my way here. Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 27, 2009 Report Share Posted October 27, 2009 Anybody got any idea about this? Is it an obvious answer or am I the only one this happens to, despite taking salt pills? Still feeling my way here.Janey- I don't have EDS but I do suffer from the digestive problems you describe ( but not as badly). For me I think the problems have to do with movement. I know I can feel sick if I roll over in bed too quickly. Does moving more slowly help you? I do get sick if I stand too quickly. Also if I have a "surge" I am running to the bathroom.I have found that when If I take a probiotic it helps a little- not because it fixes the problem. But because when you have digestive problems a lot you system just gets out of whack. I have gone form basically having to run to the "loo" all day - To not having bad problems every day (except I am always sick when I get out of bed).I know they won't "cure" you but a probiotic can help replenish the good stuff in you digestive tract that we are always losing. Sorry I am not more help. I just know with me my digestive problems are POTS not EDS. good luck kari Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted October 27, 2009 Report Share Posted October 27, 2009 I get these feelings too and am an EDSer as well. I have to be very careful about how tight my clothes are because any pressure on my stomach will make the digestive symptoms worse. The pain/ nausea/ etc are always worse standing up, but people without POTS report the same thing when sick. Ask some of your "normal" friends, most want to lie down when their stomach is upset/ painful. Why? Because it makes them feel better too! Moving slowly, as kayjay said can help too. I'm not sure if my nausea is due to EDS or not. I've had it everyday since I was 8, so it might be. Honestly, I never pursued it because I'm scared of what a Gastroenterologist is going to make me eat or drink to "figure out" what it is. Sara Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 27, 2009 Report Share Posted October 27, 2009 I've found mine to almost always be worse when I'm standing or even sitting up. Lying down with my head propped up with pillows seems to be the best for me. I don't do have EDS.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Janey Posted October 27, 2009 Author Report Share Posted October 27, 2009 I get these feelings too and am an EDSer as well. I have to be very careful about how tight my clothes are because any pressure on my stomach will make the digestive symptoms worse. The pain/ nausea/ etc are always worse standing up, but people without POTS report the same thing when sick. Ask some of your "normal" friends, most want to lie down when their stomach is upset/ painful. Why? Because it makes them feel better too! Moving slowly, as kayjay said can help too. I'm not sure if my nausea is due to EDS or not. I've had it everyday since I was 8, so it might be. Honestly, I never pursued it because I'm scared of what a Gastroenterologist is going to make me eat or drink to "figure out" what it is. SaraSara, are you an emetophobe?Janey Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 27, 2009 Report Share Posted October 27, 2009 I know I am...A good friend of mine died when she was about 9 years old because she choked on her vomit. Nasty, and scary! Quote Link to comment Share on other sites More sharing options...
Janey Posted October 27, 2009 Author Report Share Posted October 27, 2009 Anybody got any idea about this? Is it an obvious answer or am I the only one this happens to, despite taking salt pills? Still feeling my way here.Janey- I don't have EDS but I do suffer from the digestive problems you describe ( but not as badly). For me I think the problems have to do with movement. I know I can feel sick if I roll over in bed too quickly. Does moving more slowly help you? I do get sick if I stand too quickly. Also if I have a "surge" I am running to the bathroom.I have found that when If I take a probiotic it helps a little- not because it fixes the problem. But because when you have digestive problems a lot you system just gets out of whack. I have gone form basically having to run to the "loo" all day - To not having bad problems every day (except I am always sick when I get out of bed).I know they won't "cure" you but a probiotic can help replenish the good stuff in you digestive tract that we are always losing. Sorry I am not more help. I just know with me my digestive problems are POTS not EDS. good luck kariHi JayKay, thanks for this. You're right about the rolling over to quickly and the quick movement, I get that too. I wonder if it is just me though who has such a vast difference in my symptoms between lying and standing. Obviously we all get the hypotension and the POTS symptoms, but it seems every other symptom of POTS gets significantly worse too.Janey Quote Link to comment Share on other sites More sharing options...
Janey Posted October 27, 2009 Author Report Share Posted October 27, 2009 I've found mine to almost always be worse when I'm standing or even sitting up. Lying down with my head propped up with pillows seems to be the best for me. I don't do have EDS.Cheers,JanaJana, I really appreciate you replying to this. So all POTS associated headaches/nausea/pain/vision problems/whatever get worse when you are stood up? Most of my symptoms are bearable when I'm lying down; I could conduct my whole day, eat more or less normally, work, do everything lying down because the pain/nausea/symptoms are half as bad. Would you say this is true of you too?Janey Quote Link to comment Share on other sites More sharing options...
Janey Posted October 27, 2009 Author Report Share Posted October 27, 2009 I know I am...A good friend of mine died when she was about 9 years old because she choked on her vomit. Nasty, and scary!Really Jana?! I was for 20 years, and since getting dysauto/EDS and throwing up so much, I've somehow got more used to it. But if I go through a period where I don't vomit very much... it comes back.Janey Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 27, 2009 Report Share Posted October 27, 2009 Janey,Yes, I would definitely say this is true. I can only be upright for so long before I have to lay down. It's not because I have to sleep, it's just that I can't take being upright anymore. I lay down after lunch for an hour or so (no napping), and then have to go back up around 4-5.Jana Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 27, 2009 Report Share Posted October 27, 2009 This is actually how I differentiate having a virus from having a POTS flare. If I lay down and the nausea/abdominal pain/headache/etc. get somewhat better, then I know it's just POTS. Every day I deal with some level of increased nausea, headache, body aches and fatigue associated with being upright. Quote Link to comment Share on other sites More sharing options...
Janey Posted October 27, 2009 Author Report Share Posted October 27, 2009 This is actually how I differentiate having a virus from having a POTS flare. If I lay down and the nausea/abdominal pain/headache/etc. get somewhat better, then I know it's just POTS. Every day I deal with some level of increased nausea, headache, body aches and fatigue associated with being upright.I've often felt that being upright is to do with an increased sympathetic nervous system reaction. Thankful, you have raised cathecholamines, isn't that something to do with an early sympathetic reaction of some sort? I feel like my body really overreacts to being upright in every possible way it can. So my heart beats faster, my blood pressure drops, I go all fight or flight, I get incontinent, I feel nauseous, I get stomach pain. I've thought for a long time that maybe this could be prevented by anti-depressants which will inhibit my sympathetic nervous system - but the doc won't give them to me. Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 27, 2009 Report Share Posted October 27, 2009 Janey meds have really helped me. I think you need something. A beta blocker has helped me as well as klonopin at bedtime (so I am not sick at night and I can rest). I also take lexapro but my dr. now (he is a good one) doesn't want me on that drug but he doesn't want to change in now.Also yesterday I started Lyrica and now that I think of it my mom took me out to lunch and I did ok.I am not completely well on meds but I was HORRIBLE without them. There must be something to help you.The beta blocker seems to block the adreneal surges. I think it has helped with a lot of my symptoms. Hope you are doing better soon.Also I want you to know that I only get sick laying down if I roll over. kari Quote Link to comment Share on other sites More sharing options...
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