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  1. @Sarah Tee This is really interesting. When I did my invasive cardiopulmonary exercise test at UCLA the pressures in my heart drop when I’m upright. This is consistent with a venous return/preload limitation. When I exercised at the Cleveland Clinic in the supine position my pressures did not drop and they actually increased appropriately. I even felt stronger exercising on my back. This would be perfect for me! Thanks for sharing.
  2. @MikeO I’m not on any meds at the moment. Last year I was fine. In one year it’s become so much worse. No explanation from any doctor as to why this is happening. In December it will be 5 years I’ve been searching. I’ll just keep at it until I get answers!
  3. Does anyone here exercise on a treadmill or stationary bike? If so how do you feel afterwards? I always feel awful now. Very weak, lightheaded, extreme fatigue and almost sick like. I try to push myself but it’s getting worse. I used to do 30 mins on a treadmill and feel fine. Now my legs feel like jello the moment I’m done and I almost want to faint sometimes. I’ve tried to hydrate, not hydrate, wear compression socks, not wear compression socks, it almost doesn’t matter anymore. I feel awful after exercise for like 30-45 mins and then I come back to baseline. Anyone experience similar?
  4. @joz Florinef caused me the worst side effect possible. Heart failure! In November I took it for 3 weeks and my heart cath showed heart failure. I stopped it and then it went back to normal. That drug was not for me @Sarah Tee
  5. @MikeO Thanks for responding. Typically during a heart Cath the cardiac output is measured. I was wondering if some with dysautonomia also have high cardiac output. Normal cardiac output at rest is typically between 5-6L/min. Those with high cardiac output such as myself are 8L/min or more.
  6. I can experience presyncope sensations when raising my arms or using them strenuously. I was holding my puppy the other day and did curls with her and I immediately felt sick like I was going to faint. It's awful! I'm sorry this is happening to you as well.
  7. Hi everyone! Has anyone here had a heart cath that showed high cardiac output at rest? If so did your doctor say why? I know this isn't directly related to dysautonomia, but I know some of us here have had one done. Thanks in advance.
  8. @Derek1987 No. Even though it can be a side effect no explanation was given by the Director of Heart Failure team at the Cleveland Clinic. No one has answers for anything that is happening to me. It's unbelievable. I hope you're doing ok.
  9. @Derek1987 Did any of what the doc suggested, help? If so how have you improved?
  10. @michele0209 did you ever find out what was causing this? I experience fatigue in my arms and legs as well.
  11. @MomtoGiuliana I’ve had most blood work. Recently my vitamin D came back low so they started me on supplements. I think it’s from a lack of oxygen but not sure what’s causing it. Lung docs say I’m fine. Fludrocortisone put me into heart failure but once I stopped I’m not in it anymore. Cleveland Clinic swears I’m not in heart failure so now they are referring me to their autonomic guy there. I can’t see him until October though. It’s been almost 5 years and still no real answers. I’m exhausted 😞
  12. Hi everyone! Does anyone notice their fingernails curving downward when they grow out? I believe it’s from lack of oxygen but no one can tell me for sure or if it’s Dysautonomia related or something else. Does anyone else notice this? No clubbing, just curving down.
  13. @Mikayla Update on this. The Cleveland Clinic put me back on this in November 2023 and it put me into acute heart failure! I knew something was wrong because I felt awful and short of breath. I immediately stopped it after the test and repeated the test in February 2024 with normal results. I have no idea why it put me into heart failure but I won’t EVER touch that drug again as long as I live.
  14. @Sarah Tee I have been diagnosed with this by the invasive cardiopulmonary exercise stress test. It's getting worse over the years and harder to do things. One UCLA doc says I have Dysautonomia. One said I have heart failure. I came to Cleveland Clinic and they gave me Florinef and it put me into heart failure. I stopped taking it and now I'm not in heart failure. I just have preload failure. Interestingly enough when I exercise in the upright position my pressures reduce consistent with preload failure but when I exercise on my back my pressures stay normal and even increase appropriately. Cleveland Clinic is STUMPED! If they are, imagine how I'm feeling!!!
  15. @Stefan Interesting. My breathing becomes restricted almost immediately after I lie down. Then after about 5-10 mins it goes away. Sometimes it's quicker and sometimes longer.
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