Dysautonomia (Autonomic Dysfunction) Community
Little help?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Little help?

I was recently diagnosed with dysautonomia, after having several fainting episodes and other issues. My doctor put me on metoprolol and fludrocortizone (had a terrible reaction and that was the end of that) and now I'm taking midodrine as well. I'm still fainting like crazy - more frequently than I initially was, to be honest. Does anyone have any advice for coping with this? Sometimes after I faint, I can't move my limbs for several hours afterward. I was told this was normal, but I'm having a hard time feeling like I'm even human anymore. It makes school very difficult. Thanks!
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967168_tn?1343732745
so sorry to hear you're going through this; it is extremely difficult sometimes to find the right combonation of treatments/changes that works for each of us

yes it's very common to feel this way; when I have episodes I've learned to listen to my body and rest if I feel tired after...sometimes mine will last for 3 or 4 days yet other times just 1 day

they may be able to up your midodrine dosage so mention to your doctor that youre still having symptoms.  I'm not sure what other things they have you on or what other symptoms you're having? salt & fluid loading? I do notice that if I drink ice cold water when I start feeling "icky" for lack of a better word it does seem to help somewhat

others use compression hose and garments as well as binders; they dont work for me and only make my legs/feet ache that much more and I've learned for me it's important with orthostatic intolerance to move very slowly or change positions gently or I get sick

here's some info that may help; and hopefully others will be able to respond with what works for them also http://www.medhelp.org/health_pages/Neurological-Disorders/Lifestyle-Changes--Dysautonomia-Triggers/show/985?cid=196
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875426_tn?1325532016
Did they do an MRI of your brain?  Did they definitively rule out Addison's?  Did they make sure you are not anemic, including iron deficiency anemic?
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