peppermint patty Posted September 13, 2009 Report Share Posted September 13, 2009 Hi everyone, I am new to the forum and I was diagnosed with NCS late this June. I was told that my bp would drop when standing still. Today I was sitting on the sofa and I could feel it drop. I had to lay down because my bp was 92/51. Has anyone else ever had it drop while sitting? Thank you for your input, Pat Quote Link to comment Share on other sites More sharing options...
futurehope Posted September 13, 2009 Report Share Posted September 13, 2009 Sitting makes me sick. I don't know if my BP is dropping or not, but it feels like the blood is going down, not up, kind of like I am in shock.Lately, I notice that apart from feeling bad when sitting, I have the reaction of feeling "exhausted" as well. It's all part of the fact that my body does not work right. Quote Link to comment Share on other sites More sharing options...
pat57 Posted September 13, 2009 Report Share Posted September 13, 2009 How long were you sitting when you felt it?I've been told sitting 20 minutes can cause blood pooling and an NCS event.Also tho, you can have started the event previous to sitting and it culminates while sitting.Thirdly , that sitting will not start the event except when you been sitting a while.This was important information related to driving. It was safe to drive as long as I was feeling well when Igot in the car, and was driving less then 20 minutes. Quote Link to comment Share on other sites More sharing options...
peppermint patty Posted September 13, 2009 Author Report Share Posted September 13, 2009 Lately, I notice that apart from feeling bad when sitting, I have the reaction of feeling "exhausted" as well. It's all part of the fact that my body does not work right.I also feel extremely fatigued. It is nice to know I am not alone. Quote Link to comment Share on other sites More sharing options...
peppermint patty Posted September 13, 2009 Author Report Share Posted September 13, 2009 How long were you sitting when you felt it?I've been told sitting 20 minutes can cause blood pooling and an NCS event.Also tho, you can have started the event previous to sitting and it culminates while sitting.Thirdly , that sitting will not start the event except when you been sitting a while.This was important information related to driving. It was safe to drive as long as I was feeling well when Igot in the car, and was driving less then 20 minutes.Thank you for this information. Being new to all of this I am not really sure of how it all works. The doctor gave me a some info, but not I feel I coud use more. She said to drink lots of gatorade and increase salt, plus I am on a beta blocker. Before the incident I had been sitting for over an hour watching a movie, because I needed to rest for work tomorrow. Then all of a sudden it hit. The information about driving has me concerned, because I drive over an hour to and from work. I am hoping that because I have a stick shift the movement will stop it. Do you think this will help? I am so happy I found this forum. Quote Link to comment Share on other sites More sharing options...
pat57 Posted September 14, 2009 Report Share Posted September 14, 2009 I have a stick shrift and don't believe that helps. I do wear compression hose and stamp my feet or rock my legs back and forth intermittently, on long trips. I believe doing that helps. However my opinion is not what matters.After 4 years without a license, the Dr. finally approved me to drive because during my forth TTT my BP bottomed out at ?/52 instead of 0/palpable. He felt 52 was high enough to remain conscious while seated. There was also a study of NCS patients on Norpace (which I'm on) and none passed out driving during the study. Quote Link to comment Share on other sites More sharing options...
peppermint patty Posted September 14, 2009 Author Report Share Posted September 14, 2009 I have a stick shrift and don't believe that helps. I do wear compression hose and stamp my feet or rock my legs back and forth intermittently, on long trips. I believe doing that helps. However my opinion is not what matters.After 4 years without a license, the Dr. finally approved me to drive because during my forth TTT my BP bottomed out at ?/52 instead of 0/palpable. He felt 52 was high enough to remain conscious while seated. There was also a study of NCS patients on Norpace (which I'm on) and none passed out driving during the study.It is kind of weird that my doctor really didn't say a thing about driving. She just acted like NCS was something I could just cope with. She didn't seem to understand my extreme fatigue at times. I really appreciate your information. Again thank you for your help. Quote Link to comment Share on other sites More sharing options...
pat57 Posted September 14, 2009 Report Share Posted September 14, 2009 The Drs don't realize that the issues can be near constant. I have found being well rested is very important esp for the fatigue.Do you work nights, or have anything preventing you from getting 8 consecutive hours of sleep every night?Also compression stockings help me a great deal. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 14, 2009 Report Share Posted September 14, 2009 My BP is the highest when I'm lying down (95/70), goes lower when I'm sitting (about 85-90/65) and is lowest when I stand (70-75/60). My HR goes from 60-125 or so. We're all so different, and can vary a lot from day to day or even from hour to hour. Take care!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted September 14, 2009 Report Share Posted September 14, 2009 Jana, Do you notice a difference in the time of day?I am always worse in the morning but with hydration, caffeine and serious compression, I am more in the 110/70 range by about 11am.I sure feel terribly for you if you can't figure out a way to manage. Have hope though. You will learn the "early warning signs" of your own body.I have POTS / dysautonomia not NCS but we all have cross over of certain symptoms.If you pay attention, you may notice you get some "snow" in your vision or a "flip" in your gut before your bp drops...this would be the opportunity to take corrective action and avoid the dropping rock effect.Hang in there,tearose Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 14, 2009 Report Share Posted September 14, 2009 Hi Tearose,Did you mean to write to me or to Peppermint Patty, who posted this blog? To answer your question, I don't take my BP until I've had a couple glasses of water so I'm not dehydrated, and then after eating and one cup of coffee, my BP might come up by 5 to 10 points, but that's about it. And yes, I am getting used to the 'pre-fainting' signals, and grab onto something, or bend over and grasp my knees.Take care!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted September 14, 2009 Report Share Posted September 14, 2009 OOps, Jana I am not fully functional yet!!I need a little more time and compression!Yes, it was to go to Patty!thanks,tearose Quote Link to comment Share on other sites More sharing options...
peppermint patty Posted September 14, 2009 Author Report Share Posted September 14, 2009 I just want to thank everyone for your kindness and support. I am still trying to adjust to all of this and I am finding it difficult. I recently went back to work (teacher) and I wonder how long I can keep the pace. It is very difficult to keep drinking during the day. I guess I need a lot of patience with myself-------Pat Quote Link to comment Share on other sites More sharing options...
pat57 Posted September 15, 2009 Report Share Posted September 15, 2009 I have NCS and OH, and I feel sure that you want to plan your teaching style to allow walking at any time. Walking keeps the blood from pooling. Give you self an out that you can use at any time. For example, excuse me, I told Mr. so and so I would can him at : and name the current time. Or something like that. the idea being if you feel the need to walk you are not restricted. Quote Link to comment Share on other sites More sharing options...
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