Maiysa

Hi..I'm new and have questions daily since I'm just new to the diagnosis. I have autonomic neuropathy, and I know that most on here have POTS. So sorry to hear. For years during an infection I wasn't able to stand for very long or do much. Now it only happens occasionally, sometimes very severely to the point of unconsciousness for long periods and the ambulance or hospital is usually in my future. Anyhow, I feel so ignorant about all this, but since I was diagnosed I have not been back to the doctor with my array of questions since he is far away and Mayo is not on our health insurance. So hope you all don't mind my questions. I keep waking up to feeling like I'm being shaken. I thought I was imagining it, but once I was awake I realized I was really shaking or like my body was buzzing. I took my blood pressure at 1 am while I was semi propped up. My blood pressure was 85/55 and my heart rate was 138. I would fall back to sleep and feel like I was fainting...in my sleep. I know that sounds wacky, but I kept taking my blood pressure and it showed the same numbers. But when I sat up, my heart rate would get back to normal and my blood pressure stayed a little low. I had cardiology work up done and all it showed was some regurgitation in one of the valves, some palpitations, abnormal rythms, and heart rate average of 117 about the same time every night while I was asleep. He said nothing to worry about. Anyhow, am I the only one that does this? Is my blood pressure cuff not working? Or maybe the cuffs don't work right during a semi-lying down position?

Hi Sue, I'm very new at this site. Nice to meet you. I just wanted to say I do have the ridges in my fingernails just like Ruffles. I have autonomic neuropathy and I'm also anemic pretty consistenly, but they usually have to find it in a total iron panel as it doesn't show up on my CBC some of the time. I've actually had my ferritin levels (iron storage) listed as low as 1, (can't remember the measurements used) but I was told they usually do a blood transfusion at 3, which they tried to talk me into. I chose to eat liver instead and eat iron tabs. Ew! So maybe have them do a ferritin level check. Even when my ferritin was that low my hemo and RBC were very close to normal. I think it also showed up on my saturation??? Not sure what that was, but it was in iron panel. Happiness to you!

Thank you Issie and Bella Mia for your replies and the welcome. Although, I'm so sorry the Clonidine didn't work for you, I was hoping too it would be fix too. At least I know I'm not the only person that reacted. I was told to take half a pill of Clnidine, .05 and I took a small sliver off of the half pill. It's incredible how much I reacted. I also have to take iron due to the anemia and I took a supplement this morning and it's doing the same thing. I'm sweating! Which is weird because the QSart said I didn't sweat. I don't understand it. But I know the Floridix iron has B12 in it and it usually brings on the same reaction-I don't usually take it and this is why, but I'm really anemic lately. If I could find a snow bank right now I would be better. So sweaty. I also take levothyroxine for thyroid cancer that I had a few years ago and have to keep hyperthyroid to keep the schmanser at bay. The doctor told me that hyperthyroidism doesn't help dysautonomia at all. So I'm in a pickle to say the least.

I'm sensitive to all medications-they make me have black out episodes that are dangerous since they can last for a long period of time. Anyhow, I'm new on here and wanted to ask if anyone else had a reaction to Clonidine. I didn't do so well with it. I slept for a few days the first dose and then the second dose started sweating profusely....and I don't sweat and the next day had flushing and a bit of panic and got very sick. Of course they told me not to take it anymore, not sure what options we have left since I have autoimmune autonomic neuropathy with lots of other diagnosis. Did anyone else have reactions to Clonidine? Thank you for your time.