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TERRI13452

pure autonomic failure

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Hello: my name is Terri. I had gastric bypass surgery two years ago and (oh joy)

developed what the doctors have now decided is pure autonomic failure. 10 days in the hospital, surgeons treating me like I was a lunatic and finally my beloved PMD who ordered the tilt table which I promply failed, and the head of the bariatric program who decided on the diagnosis. Hurray! at least I know I am not nuts. I am living on a fairly large dose of Florinef, .5 a day. Still have symptoms (just love the world of the terminally dizzy). Any others out there with similar experience? I ordered and received my bracelet, love it. Have used the cards a couple of times and they are a termendous help. I find when I utilize the tube feeding they instituted I feel a bit better but with the recent birth of my grandchild, I have been a bit lax with that. I appreciate a forum to ask questions about this

situation. Thanks. Terri

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Hi Terri,

Welcome to the forum! Sorry that you have to come here as a fellow member of the terminally dizzy, but glad you found us for support and answers to questions. I've found a lot of comfort here just knowing there are others who understand my problems. Look forward to reading more posts from you.

Kristen

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Hi Terri,

Welcome to the forum!  Sorry that you have to come here as a fellow member of the terminally dizzy, but glad you found us for support and answers to questions.  I've found a lot of comfort here just knowing there are others who understand my problems.  Look forward to reading more posts from you.

Kristen

thank you very much. It gets so absolutely frustrating to be dizzy all of the time and to know that if you stop taking the drug that has so many side effects, you will fall down!! Ah well - what doesn't kill us makes us stronger right? :)

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Hi Terri,

welcome to our world! You'll find a lot of warm and helpful people here, who really care about eachother and understand! So, again welcome and I hope you'll find they answers that you're looking for,

Corina :)

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Hi Terri,

welcome to our world! You'll find a lot of warm and helpful people here, who really care about eachother and understand! So, again welcome and I hope you'll find they answers that you're looking for,

Corina  :)

Thank you very much Corina. You would think being a nurse that it wouldn't bother me so much but tonight for example, I have spent quite some time folded over, or sitting on the floor and/or trying not to pass out on my patients. One of the new things I have experienced is overwhelming fatigue, more than I have had in the past. Is this part and parcel of dysautonomia? Thanks Terri

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Hi, Terri and welcome. Overwhelming fatigue is one of the most debilitating sxs many of us experience. Sometimes it is related to activity, sometimes to a virus, and sometimes just for no obvious reason. Some of us have periods of good years, some periods of good months, some have good days and bad days. Personally, I have good hours and bad hours. If I plan ahead and prepare I can have two to four good highly functional hours at a time. By preparing, I mean taking 1-2 liters of fluid before I do the actvities I really want to participate in with my kids. So, that is probably more than you wanted to know but yes, fatigue is a problem for most of us.

Carmen

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Adding my welcome, too, Terri! :)

I'm glad you've got a definate diagnosis. It's nice to have a name and explanation to give people when they give you strange looks (or when you start giving yourself strange looks as the case may be! :) )! Ask all the questions you want -- we're so happy to help!

Carmen's right on about the fatigue! :( But we learn to live with it and even start learning little tricks to handle it (although it can prove a really very stubborn symptom! :) ).

Congratulations on the new grandbaby! Enjoy!

Angela

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Hi Terri!! welcome!!!

glad that you found us!! you will find great support here..:)

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hi terri -

i'm a bit late in coming but just wanted to say welcome. i'm sorry you have reason to be here but am glad you found us.

:P melissa

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Welcome to the group. This is one I am sure you did not aspire to land yourself in, but you will find having friends in the same places is quite comforting. I to struggle with the fatigue. I have terrible sleeping patterns despite the large doses of sleeping medications they give me. For the past two weeks I have hardly been out of bed. But if you wait long enough a good week will come around. They always do. In the mean time I just look -up all the good bargains on the internet so I will know how to spend my money quickly and efficiently. Ha/Ha. Hope you are feeling well soon. Happy Thanksgiving.

Jamie

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