DizzyGirls Posted August 20, 2015 Report Share Posted August 20, 2015 I posted last week regarding my daughter's chronic unrelenting vertigo in addition to her blurry vision, extreme headaches and migraines. Well, just got home from our visit at UCSF (soooo tired, so I'll try to make sense of everything!), and we finally got an official diagnosis of Dysautonomia (he's says it's bigger than just "POTS"), of course POTS (he's thinking possibly "hyper POTS", but needs to do some testing to determine that. Also, the big thing....wait for it.....is that UCSF is forming an Autonomic Clinic (sounds like Stanford's) consisting of neurologists and cardiologists that is to open in October! My daughters are two of four of his patients that will be the first to be seen! My daughter and I had to find a bathroom after the appointment and we did a happy dance once we closed the door! Also, last but not least, each of them got a prescription for some Florinef. I think it's been a good day and I'm going to take a nap now! Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 21, 2015 Report Share Posted August 21, 2015 That's great news (well, the good appt part, not the dysautonomia part!) I'm glad the appt concluded with a happy dance! Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 21, 2015 Report Share Posted August 21, 2015 Wow! You had a really good appointment and sounds like you found a doctor that cares. So happy for you guys and hope the new medication helps. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 21, 2015 Author Report Share Posted August 21, 2015 That's for the happy thoughts! I forgot to put this in my original post, but if anybody could tell me how they reacted to Florinef that would be helpful. I'm not really sure what to expect, how many symptoms this will alleviate (if any), and how long it takes for it to start working. Also, seems that it might be hard are the stomach?? Any personal experiences would be great! Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 21, 2015 Report Share Posted August 21, 2015 The first time I tried florinef it took about 4 or weeks to feel any improvement. I slowly realized my bp was a bit higher than normal, which back then I was running 90/60 consistently. It went up to 100-110/70-80. I also found I was able to retain more fluids and had a lessening of my polyuria especially at night. I started at .05 mg (half a pill) and after 2 wks went up to a whole pill. That transition was fine. We tried to up my dose from .1mg 1x/day to .1 mg 2x/day and that was a no go because it caused a major migraine that lasted for several days. I eventually had to come off of it for reasons unrelated to the drug.This spring I tried it again. .1mg 1x/day. I had an odd reaction to it, almost a paradoxical effect. It increased my heart rate and I was having bad presyncopal episodes daily. It did help up my bp again, so my POTS neuro and I decided on a very modified schedule. I take .1mg every 3rd day now. This seems to be ok for me right now. It still helps my bp and reduces my polyuria but my heart rate isn't constantly elevated so that is better.I do have serious and severe GI issues and have not had a problem with this med in that aspect. Hope the girls find some relief with this med. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted August 21, 2015 Report Share Posted August 21, 2015 That is great news for you all!I have been taking Florinef since December and it has really has helped me, At first I experienced headaches soon after taking it and lower back pain in the night for a number months, however I stuck with it and saw improvements in the first few weeks. When I started it I was struggling to even stand up but slowly I began to feel less unsteady, dizzy and generally my functions improved, speech, brain fog, nausea, shaking heat intolerance.I still get all these things daily but they are less severe. It has helped with the fluid loss I spend less time going to the bathroom! My nightmares have disappeared as well.I was on 0.2 mg but since I my TTT I crashed so Dr put my dose up for a week to try to boost my energy. It has taken 6 days to see an improvement but yesterday was the first day I didnt have to go and lie down in the afternoon.I have been splitting my dose that prevents the banging headache and I find drinking two glasses of water straight down when I take a tablet helps too. I always eat when I take them to help with the stomach irritation.I have experience really bad bruising and my skin has deteriorated, I get excema and psoriasis and that has flared up. My Dr is monitoring my bloods each month. I have constant muscle pain and the down side is you cant take ibroprofen on Florinef .In my experience it takes time for your body to adjust and it is worth giving it a chance if the side effects are not too bad, for me it was a slow gradual improvement. I know it doesn't help everyone but I really hope that it helps your daughters.best of luck ! Quote Link to comment Share on other sites More sharing options...
outofadream Posted August 29, 2015 Report Share Posted August 29, 2015 Hurrah for the happy dance! I'm glad you guys got some initial answers, and that's awesome that there will be a clinic with more expertise coming soon! I hope the florinef's been going OK so far, will be keeping fingers crossed that things keep looking up. Quote Link to comment Share on other sites More sharing options...
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