Dysautonomia (Autonomic Dysfunction) Community
Newly Diagnosed and Florinef
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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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Newly Diagnosed and Florinef

Hello! I am fairly new to this forum, and have only asked one question so far. Mostly I just wanted to share an update. For anyone who doesn't remember, I am fourteen years old and in the tenth grade. I have been having symptoms of POTS for a while now, and like many, it has been a long road. I went to a specialist on the 22nd, and was officially diagnosed with POTS. (Finally!!!) We will be doing a heart monitor to make sure that nothing life-threatening is wrong along with my POTS, due to the fact that I've been passing out with physical exercise, and we want to make certain it is due ONLY to the POTS and not to something else. I start taking a low dose of Florinef on the 23rd, and have a follow-up in a month. I was wondering if anyone had taken Florinef, what side-effects (if any) they had experienced, how severe they were, and how they combat them. Do they go away after being on the medication for a while? Do you have any tips for taking it? (On a full stomach or an empty one? etc.) What was your overall experience with Florinef like, and how long did you take it for?

Thanks so much for taking the time to answer my rather lengthy set of questions, and I apologize for asking so many. I just like to know as much as possible about what I'm about to start doing, and we didn't really go over that stuff during the appointment, as I totally wasn't thinking about it at the time. (Stupid brain fog...)
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My  took florinef(fludrocortisone) for 2.5 years starting at 14 years old.  He had a little weight gain from it, but it could also be from inactivity from POTS in general.  Other than that, he had no issues with it.  

The symptom it relieved was his dizziness.  My daughter is currently taking it and has not put on weight, but it did take away her dizziness as well.

They take it in the morning, with or without food, without problems.
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Also, since you are 14 have you looked at dynakids.org?  It is a very helpful sight for kids and their parents.  Lots and lots of info and print outs for schools, relatives, friends,etc...
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I took it for several years with no side effects unless my dose got too high (in which case we just lowered my dose again and I didn't have the side effects anymore). I took mine with or without food and it never seemed to matter either way. Congrats on getting diagnosed!
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