Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hi guys, I was wondering if anyone is on meds specifically for dysautonomia? I was just put on florinef and ProAmitine for it. The florinef is used alot for it from what I understand. But the Proamitine is what I'm concerned about- it supposively is only used for mainly severe cases because of potential side effects. It can cause significantly high blood pressure when laying down and it is recommended you dont lay flat while on it (I take it 2-4 times a day depending on if I am feeling ok enough to sit up- it works for 4 hrs.) So far it has given me bad side effects but my dr said to expect that the first few days (I started it Saturday.) I believe the florinef has increased my energy levels at least though, otherwise havent noticed anything from it. I go back to the cardiologist that prescribed this for me on Thursday- he is going to be doing what is called a metabolic stress test- where they put on you a treadmill like a normal stress test but it also mesures your breathing and the way your body uses oxygen and some other stuff too. I'm still waiting for my muscle biopsy results, but I'm hoping to get them by the end of this week by what I've been told by Dr. Shoffners office. I will let yall know about that and the cardiologist appt too. Anyways, I continue to be in a crash here, I havent been able to read posts really cuz of double vision but hopefully these new meds might help some with my recent increase in probs. My dr seems to think they are gonna be miracle meds for me and help with most my symptoms (he doesnt really know much about mito and seems to think that I just have severe dysautonomia and multiple neurological/neuromuscular issues brought on by my seizure disorder- I cant seem to convince him otherwise- maybe if my biopsy shows something he will reconsider- I just dont like how closeminded he's acting, but at least he's willing to try stuff.) Anyways, just thought I'd ask about this stuff and give an update too. Am thinking about you all. Take care, Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Adrienne, I was put on ProAmanitine for low bp years ago. The dosage needs to be built up. to diminish any side effects. It actually never did increase my bp but made me feel like my skin was itchy and my scalp was raising up off my head. My cardio told me to discontinue it when it wasn't working. Hope you get some answers this week. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Adrienne, I haven't heard or been on any meds for dysautonomia. I am hoping they help you. Sorry to hear that you are still in a crash. You continue to be in my thoughts and prayers. Smiles and hugs, a On Tue, 11 May 2004 08:32:33 EDT moonchild62579@... writes: Hi guys, I was wondering if anyone is on meds specifically for dysautonomia? I was just put on florinef and ProAmitine for it. The florinef is used alot for it from what I understand. But the Proamitine is what I'm concerned about- it supposively is only used for mainly severe cases because of potential side effects. It can cause significantly high blood pressure when laying down and it is recommended you dont lay flat while on it (I take it 2-4 times a day depending on if I am feeling ok enough to sit up- it works for 4 hrs.) So far it has given me bad side effects but my dr said to expect that the first few days (I started it Saturday.) I believe the florinef has increased my energy levels at least though, otherwise havent noticed anything from it. I go back to the cardiologist that prescribed this for me on Thursday- he is going to be doing what is called a metabolic stress test- where they put on you a treadmill like a normal stress test but it also mesures your breathing and the way your body uses oxygen and some other stuff too. I'm still waiting for my muscle biopsy results, but I'm hoping to get them by the end of this week by what I've been told by Dr. Shoffners office. I will let yall know about that and the cardiologist appt too. Anyways, I continue to be in a crash here, I havent been able to read posts really cuz of double vision but hopefully these new meds might help some with my recent increase in probs. My dr seems to think they are gonna be miracle meds for me and help with most my symptoms (he doesnt really know much about mito and seems to think that I just have severe dysautonomia and multiple neurological/neuromuscular issues brought on by my seizure disorder- I cant seem to convince him otherwise- maybe if my biopsy shows something he will reconsider- I just dont like how closeminded he's acting, but at least he's willing to try stuff.) Anyways, just thought I'd ask about this stuff and give an update too. Am thinking about you all. Take care, Adrienne Quote Link to comment Share on other sites More sharing options...
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