blizzard2014 Posted August 2, 2018 Report Share Posted August 2, 2018 I had a flare up big time last night. I had HR increasing up to 45 points from sitting to standing. I tested over and over and BP was normal sitting and 140/110 standing. Then I got cold and passed bowel like I had taken laxatives and did not take them. Went to the bathroom four full times and can still feel backed up with more waste. This morning I took my meds and all is well for now. I wish I would have had a tilt table test last night. I would have been positive. I felt so sickly I didn't even eat my one meal a day. I was backed up and in stomach pain. My chronic pain in right leg was also acting up again. That is so weird because the night before last, on the same dose of meds, I was having low blood pressure when sitting and normal when standing. I only decided to check all of this because I was getting headaches and I could feel my heart pounding inside my neck. I get this sometimes when I am so backed up with food I can't eat, but feel soo backed up and unwell that I have to lay down until I start to empty out. I still feel like I have a lot of food backed up inside me and kind of bloated and painful. I just thank God I did not have to go to work yesterday or today. I am worried I might have to give up this part time job because I had severe craps in the leg that has clogged veins from chronic DVT's in it. Every time at work, starting from Saturday night and till now, if I walk too fast my calf cramps up so bad it almost drops me to the floor. Same thing happens if I climb the stairs too fast. I only had this after my original DVT's. Cramps so bad they would wake up out of a dead sleep. I use my muscle relaxer at night and it helps. I am trying to add another 2 hour a night job on Sat and Sunday and now worried I might be taking on more than I can handle. It would make my 3 hour work days on Sat and Sun into 6 hour work days and that might just be enough to cause flare-ups. I hate all this crap. I'm looking into going to a university hospital for help as they are usually willing to use patients with rare disorders as guinea pigs to learn from. There is one close to me that tests for POTS and other autonomic dysfunctions. I think I need better treatment than what I'm getting now. I really need some professional medical guidance. This stuff isn't fun anymore. I hope the rest of you have been doing well this past week. Quote Link to comment Share on other sites More sharing options...
blizzard2014 Posted August 2, 2018 Author Report Share Posted August 2, 2018 My HR was bouncing between 70 and 130 last night. I could feel it pounding like crazy. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted August 2, 2018 Report Share Posted August 2, 2018 Are you about a week out from your cycle? I am sorry if I incorrectly assume you are female. I notice I get flares the week leading up. I am sorry things are going rough. Remember it does get better and doesn't last forever. I have thought about trying a university setting but my local university has always been a joke for me. Which is funny because they are one of the top in the country. If you end up doing it I would like to know how it goes. Try upping your electrolytes. When I feel extremely bad I drink the vitamin water Revive. It has extra potassium in it. It is fruit punch flavored. It is a little sweet but it seems to help. I wish you luck in the coming days and hopefully your flare will ease soon. Quote Link to comment Share on other sites More sharing options...
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