jangle Posted January 18, 2012 Report Share Posted January 18, 2012 Since starting Florinef roughly two weeks ago, I've noticed a considerable improvement in my lightheadedness symptoms! I've been praying every night and began reading my bible again, it's perhaps not very relevant but it makes me feel so much better thinking god is with me in my recovery.I'm very pleased with the reduction in lightheadedness and subsequent return to personalization. I feel as if I'm coming back to reality sort of speak. I guess my last sentence is something only someone with POTS would understand.However I have noticed some side effects. I'm finding it more difficult to concentrate, specifically I'm finding my thoughts are weaker and there seems to be a sludgy kind of heaviness feeling when I try to think. It began roughly 4 or 5 days ago is when I really noticed it. I don't know if it's depression or what is going on, I'm wondering if anyone has had this kind of side effect with Florinef and if it might go away.For now I turn to prayer, which is really all I have and all I ever need. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 18, 2012 Report Share Posted January 18, 2012 Thats great its helping!I couldnt tolerate it though....after a week I felt like I had the flu constantly then after a month the migraines started. I tried it twice and it was the same way everytime, but everyone tolerates it differently. Hope it helps you Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 18, 2012 Report Share Posted January 18, 2012 I take florinef and have that too- but don't know if its the meds or the pots. Steroids can do a lot to your body. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted January 18, 2012 Report Share Posted January 18, 2012 I have tried Florinef twice because with my symptoms- very low BP and high tachy- it would seem logical. It does make my cognitive function suffer and the headaches are not tolerable. To me, within 20 minutes of taking it I feel like my head is in a pressure vice. I deal with a LOT of migraines and headaches (post concussive syndrome and 6 concussions all from syncope). I think with the head trauma I have had that the increased pressure it creates in my brain just increases those symptoms and makes it even harder to concentrate or live any type of life- even when I am in bed.So for the second time I stopped it and won't be trying it again. I still take Midodrine which also has side effects I don't love but I can tolerate. I do think I get somewhat of a benefit from the Florinef orthostatically but not nearly enough to cope with the major debilitating side effects and I am STILL having daily syncope and chronic OH while on it and Midodrine so obviously isn't my miracle answer. Nothing seems to be yet. I also pray and try very hard to count my blessings at the end of the day. And I had mentioned in another post that I have a Gratitude Journal dedicated to my husband to make sure I realize everything he DOES for me every day... I also started a small journal in which I find at least ONE thing to be grateful about within this horrible disease. Something it has taught me, a priority it has changed, a new friend I have made... something- every day (and sometimes it takes longer than others and sometimes I come up with multiple things and sometimes it is really stupid like I got to be home to watch a good episode of Dr. Phil or something lame like that) but every day I make myself focus on one positive thing that this condition has brought to me. I know there will come a day that I will be looking at this from the OTHER side of the mountain, still struggling I am sure, but stronger, healthier and with a better sense of priorities and what matters and what doesn't- because that is the big equalizer within this condition. We find out very quickly what really matters and what doesn't, we find out very quickly who our true friends are and who they aren't (and I have to say that this one really surprised me on both ends of the spectrum!), and we find out very quickly if we our spiritual and have a personal faith that we have to hold on to that faith and really trust in a way that I had not been able to do before. It has been a learning experience. But, I do have a strong sense that I will emerge from this horrible episode I am in right now a better person, mother, wife, friend than I was before. On my hard days, I remind myself of that.Jen Quote Link to comment Share on other sites More sharing options...
Elfie Posted January 18, 2012 Report Share Posted January 18, 2012 I'm the only person I know who is allergic (like horrible hives allergic) to florinef. It made me stupid too-- but all POTS meds have had that affect on me. Quote Link to comment Share on other sites More sharing options...
E246 Posted January 18, 2012 Report Share Posted January 18, 2012 It is the first medication to help me - within an hour i felt like a different person. But i am worried about the long term effects. I only take 1/4 tablet ie .025 and this seems to be enough and it doesn't seem to have any side effects for me. Istill can't walk far because of the chest pain but i no longer feel ill all the time. Tried to read as much as i can about possible long term effects but info seems a bit cloudy.This should really give the docs a clue as to what my problem is if this cures it so am looking forward to my next appointment in 10 days.Interested in any other info you can find as like you it has made such a difference. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 18, 2012 Author Report Share Posted January 18, 2012 Wow, I'm taking 4 times the dosage you are, I'm at .1 mg. Quote Link to comment Share on other sites More sharing options...
E246 Posted January 18, 2012 Report Share Posted January 18, 2012 Was prescribed 0.1 but have had a few bad reactions so only tried a quarter. next day tried a half and it made me worse so have stuck with this dose. has made me feel a lot better. Have you been told how long you will take it? Are you supposed to take steriods for long? Can't find much very conclusive on web. ).1 is a normal dose but i have a tendency to high hr so was being careful. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 18, 2012 Author Report Share Posted January 18, 2012 I think this is a medicine that only treats symptoms, not the underlying causes. Therefore you will probably have to take it indefinitely. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 18, 2012 Report Share Posted January 18, 2012 It takes awhile to work though.. it has to build up in your system... I heard some didnt have improvements for months. Quote Link to comment Share on other sites More sharing options...
Sif Posted January 19, 2012 Report Share Posted January 19, 2012 I find it harder to concentrate and my attention span is much shorter. I'm not sure if it's the Florinef or the POTS in general though as I was diagnosed pretty quickly and put on my meds within a couple of weeks of it getting really bad.I do find that it's given me bad skin though and I've gained some (much needed) weight.. and I'm also hungry all the time now! I'm take all that though because I'm up and walking around now. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 19, 2012 Author Report Share Posted January 19, 2012 I find it harder to concentrate and my attention span is much shorter. I'm not sure if it's the Florinef or the POTS in general though as I was diagnosed pretty quickly and put on my meds within a couple of weeks of it getting really bad.I do find that it's given me bad skin though and I've gained some (much needed) weight.. and I'm also hungry all the time now! I'm take all that though because I'm up and walking around now. Sif have you found that your cognitive symptoms have improved with time or stayed the same? Quote Link to comment Share on other sites More sharing options...
Sif Posted January 19, 2012 Report Share Posted January 19, 2012 I feel they may be slowly improving as I adjust but not by any great amount. In any case, they aren't getting worse. Quote Link to comment Share on other sites More sharing options...
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