GENETIC DISORDERS EXPERT FORUM
Autonomic instability in EDS

Autonomic instability in EDS

My second post today... In addition to the monitoring of heart and aorta, I would like to know if there is any recommended treatment for dysautonomia in EDS aside from the midodrine, mestinon, and fludrocortisone. I have a small problem with lightheadedness and passing out, but only after doing some strenuous activity. Unless the temp around me is rather high and I haven't had enough fluids, just standing up or being vertical will not make me pass out. But even if I am in AC, if I do something strenuous, like lift weights, or move some furniture, I will most likely pas out or come close to it afterwards.
However, the thing that bothers me most is the sweating. I don't have to be hot in order to sweat. If I concentrate a lot on something, do some physical activity, or if my chronic pain is out of control, I will sweat uncontrollably. If I add on to that being in warm weather, like 90 or above, and then add in one of the triggers for sweating, I sweat so much that I cannot intake enough fluids in order to counteract the sweating. My stomach cannot process the fluids fast enough to keep up. Is there a good treatment that is not an SSRI or tricyclic for uncontrollable sweating due to autonomic dysfunction? I don't respond well to any kind of a serotonin reuptake inhibitor, so that is why I want a treatment that is not an antidepressant. I have looked online and found articles for autonomic dysfunction, but the only treatments mentioned are for orthostatic intolerance. I haven't found any treatments for the perspiration problem. Putting something topical on isn't really an option because most of the sweating is from my head. I end up showering and changing clothes many times a day; sometimes 5+ showers and changing of clothes in a single day. So, it is really a very big problem for me.
Thanks
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We recommend that you meet with a physician to discuss your symptoms. We also recommend that you meet with a medical geneticist who can review your history and discuss any appropriate treatment options. You can find a medical geneticist at the American College of Medical Genetics.
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