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About livingwithpots

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  1. davecom, I completed 5 months of cardiac rehab, which started out on recumbent bike and graduated to treadmill over a period of months. I have been trying to make the next step of getting back to baseline by jogging. My goal is to be able to run with my husband again like we used to. At this point I can only jog slowly for about 3 minutes before the chest pain starts radiating to my neck and jaw. But when I started I could only do 1 minute, so I feel like I'm making progress! Yesterday's syncopal episode wouldn't have bothered me so much if it wasn't for how horrible I have felt since it happened. I'm hoping it's only temporary!
  2. futurehope, I accidentally ran through a bunch of goat head thorns, and about 30 of them got stuck in my shoes. My husband told me to stop so we could pull them out, and then he got a little more than he bargained for, lol! I think my response to stopping exercise is exaggerated compared to someone considered "normal". When I was in cardiac rehab, I gave them quite a scare when I stopped the treadmill after the regular cool down regime that they have for all of their patients. After I collapsed, at future visits they designed a special cool down program for me where I had to slow the treadmill down by 0.2 every 2 minutes, until the treadmill was at 0. All of the other patients (post MI/CVA/bypass etc) thought it was so funny how slow I had to go before they would let me stop.
  3. Ever since this happened yesterday, I feel like I've taken giant steps backwards in terms of symptoms. I haven't felt this bad since before I went to the mayo clinic over a year ago! How long do flare ups usually last?
  4. Wow, that's so interesting! When I was in cardiac rehab last year, whenever I would stop exercising, my HR would jump up 30-40bpm. No one could figure out why it would do that, and not go down like a normal person. Perhaps it is a compensatory tachycardia responding to a post-exertional hypotension?
  5. What was so unsettling for me was how quickly I passed out after stopping. It was like someone flipped a switch - no warning at all. I have been trying to exercise as much as my body will tolerate, but this makes me nervous to try again. The interesting thing is that the only time this happens is when I stop suddenly. If I gradually slow down, then I'm fine. My theory is that when my leg muscles stop contracting (and helping pump blood back to my heart), my vascular tone is so poor that my blood pressure tanks and all of my blood ends up in my feet. Has anyone else experienced this or found a way to overcome it?
  6. Has anyone ever lost consciousness (or had presyncope) after exercise? Today I went jogging (at a slow pace and for about 3 minutes). I had to stop suddenly instead of slowing to a walk as I usually do, and immediately my vision went black, and my husband basically caught me on the way down. For 5-6 hours after, I struggled with brain fog, chest pain, and a resurgence of all of my POTS symptoms that have been slowly improving over time. I have been trying to work on reconditioning lately, in the hope that my symptoms will improve - and because I miss the days when my husband and I would go on long runs together! I can jog for a maximum of about 3 minutes, before I get chest pain that radiates up into my neck and jaw. I'm thinking this is some sort of post-exertional hypotension, due to poor venous tone. Does anyone have any other theories or similar experiences??
  7. BellaMia, thanks for the advice! I didn't know that you had to move for the barium swallow. I'm glad you told me!
  8. Wow, thank you all for your responses. It is comforting to know there are other people dealing with similar problems. I have the barium swallow in a few weeks; I'll post the results when I hear how it went. Sigh. Some days/weeks are so discouraging! I had been doing fairly well symptom-wise (apart from the dysphagia), until the weather got a little warmer. In fact, I was actually entertaining the idea that maybe I was well enough to drive again - which would be so nice since I have two kids and a husband that works 80+hrs/wk. But then the temperature crept up to 78 degrees. That's not even hot, but it's enough to make all of my symptoms flare up. So discouraging, especially since I live in an area that gets up into the 100's during the summer. I just want to be normal again.
  9. Hello, this is my first post here, although I've been visiting the site for over a year. It has been sooo helpful to read about other people's experiences, and to know that I'm not alone. Recently I've developed a scary new symptom. My swallow reflex is not functioning properly. Food drops into my esophagus before I've finished chewing it, I often get water up my nose when drinking or brushing my teeth, and I've started to choke on my own saliva. Twice I've had drinks "drop" into my trachea unexpectedly. Super scary!! I am constantly afraid that I'm going to aspirate something when I eat or drink. I am scheduled for a barium swallow study in a few weeks, and I'm curious if this could be POTs related. My second wierd symptom is bulging veins. I've read that blood pooling is a common symptom in POTs, but it seems people always describe it as their limbs turning purple. When I stand (or even have my hands below my heart) the veins in my extremities bulge like crazy. I can feel my heart beat pumping in my hands and feet if I stand for too long. My legs ache - so bad that I can't sleep at night. I'm actually lying in bed now with my legs elevated on pillows, trying to ease the discomfort! Do either of these symptoms sound familiar to anyone? And if so, what do you do to improve them? Thanks in advance.
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