Faintinggoat Posted February 27, 2014 Report Share Posted February 27, 2014 Need to vent! I'm starting to think that Florinef just isn't worth it with me. When I first started taking it I was having some beneficial effects from it in terms of less dizziness etc. But then I started having issues with eating. I am never hungry and when I do force myself to eat I am full after a few bites. After that I started retaining too much fluid and my ankles and legs started to swell. We decreased the dose from .3 to .2 because of that so that swelling has gone down a bit. Then I developed a fluttering in my chest which felt different from the typical POTS palpitations. Now I am having a lot of discomfort in my chest. My dr told me she thought it was because of the fact that I was retaining fluid and that it should go away with the swelling, but idk. Anyway, sorry I just needed to vent and so few people in my life understand. Fainting Goat Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 27, 2014 Report Share Posted February 27, 2014 Hang in there with the florinef. Maybe your dosage just needs to be tweaked some more. My son started out at a much lower dosage and had to build up to a larger dosage before it was helpful.. This medication was very helpful in the beginning. However, my son longer takes it because for some unexplained reason his body no longer needs it. The cardiologist thinks this is a sign that his body may be healing or that other supplements are helping with this problem. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted February 27, 2014 Report Share Posted February 27, 2014 Fainting goat,I'm sorry that you are feeling so awful! My experience with Florinef is that the dosage needs to be just right. We are probably all a little different in what works for each of us. I've experimented with the dosage a lot over the past year and a half and stopped for a month in between (to try another med). The right spot for me seems to be .1. If I go even 1/4 of a pill higher I get lots of headaches and bloating, but at .1, I have no side effects - only the benefits. That 1/4 of a pill makes a huge difference, so I can't even imagine what .3 would feel like! That is quite a high dosage for Pots, typically the guidelines indicate up to .2. I have heard of a few people being on higher dosages because of their individual situation, so maybe you fall into that category.I will bump a forum poll on members dosing amounts, in case you haven't seen it - just to give you an idea of what has worked for others.It's a good sign that you saw benefits in the beginning. Were you on a different dosage then? I hope you are able to figure out what works for you! Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted February 27, 2014 Author Report Share Posted February 27, 2014 Thank you both for your responses.Looneymom -- that's great that your son doesn't seem to need it anymore and that it seems his body is healing. I think that's what we all aim for to some extent. Allaboutpeace- I started at .1/daily and we have been tapering up because the befits were there but they were minuscule. We went up to .2 from there and the benefits were better, but we kept tapering up because we were hopeful that the higher dose would have even greater response. It doesn't help that neither of us really know what we are doing. We have both done research, but are both just experimenting with different things. My specialists left us high and dry after I was diagnosed. We have also considered trying Midodrine. Have you had any issues with Hypokalemia or hypertension on the Florinef? My dr and I have been conversing back and fourth (waiting to hear from her today) but I seem to be having some symptoms of high blood pressure and low potassium.Fainting Goat Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted February 27, 2014 Author Report Share Posted February 27, 2014 so my doctor has me scheduled to see her tomorrow, switched me down again to .1mg of florinef and told me to go to ER if it gets worse overnight, Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted February 27, 2014 Report Share Posted February 27, 2014 I have not had issues with potassium at all since starting Florinef, but that may be because of the lower dose. I did have issues with low potassium when Pots hit, but not since Florinef.My blood pressures have only raised within 10 points (both systolic and diastolic), which brings me up to better levels. I don't know how long you've been taking it, but for me, it wasn't until the fifth week that I felt maximum benefit. Then when I stopped and started again (to try Midodrine) it took 6 weeks to maximum benefit. So it can take some time. From what I understand, that is typical. I did start noticing little improvements up until that point, but not really significant until it fully kicked in.I know the trial and error part of things can be very frustrating at times and feeling awful in the process isn't fun either... It is worth it when you get it figured out though! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted February 27, 2014 Report Share Posted February 27, 2014 Fainting goat,I just saw your note. That sounds like a good plan - I hope the change in dosage will help you feel better! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted March 1, 2014 Report Share Posted March 1, 2014 Fainting goat,I hope you're starting to feel a little better. Have your symptoms started to subside at all? Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted March 1, 2014 Author Report Share Posted March 1, 2014 Started writing a response to you, went to put laundry in and forgot I was responding to you... so let us try this again.Thanks for checking in. I am okay, I ended up punching a hole in my frequent flyer card at the hospital because my headache got soo bad and because I was no longer able to eating and keep it down anymore when I did eat. As much as I hate it there, sometimes I wish they would just keep me for a while to get things under control and get me to a semi-functioning state, if that makes sense (it seems so silly to me). But I got saline, and about 5 meds for the headache. The chest pain is pretty much gone, and the headache is almost gone (like a 1 instead of a 7). Saline is a miracle worker for me. I am still having the eating issues, but at least the other stuff is taken care of. I was there for like an hour before someone saw me (they waited til the next shift came in to assign me). There is also this really annoying made up drinking holiday at my university that runs this weekend, so there were A LOT of drunk people. But I got a PA and a nurse who were actually quite nice and understanding that I wasn't just someone who comes in for attention or just another drunk college student. Anyway, I am to check in with my dr tuesday or wednesday and if the florinef is still causing me to have eating issues this bad we are going to try midodrine. Thanks again for checking, Goat Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted March 2, 2014 Report Share Posted March 2, 2014 I'm glad to hear things are a little better. Saline is awesome! I'm sure it was refreshing for them to have a sober patient. Just a thought when you're talking about the eating issues - do you take Florinef with food? I remember the pharmacist suggesting I take it with food to avoid belly issues. Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted March 2, 2014 Author Report Share Posted March 2, 2014 I have done a lot of messing around with that stuff. I have taken it in the morning, changed to taking it at various times of day (9:30. 1:30. 5:30, 9:30 -with my propranolol). Experimented with taking it with and without food. Nothing seems to help. Quote Link to comment Share on other sites More sharing options...
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