dizzyallie Posted March 12, 2012 Report Share Posted March 12, 2012 Hi everyone,I have been taking florinef .1mg now for 3 weeks but find I am worse. The dizziness is definitely worse. I am in tears.Can barely get to the toilet - and barely shower. Standing is cruel. I can barely manage 5 mins.I think it's worsening my vertigo/dizziness feeling, anyone else found this??Thanks Quote Link to comment Share on other sites More sharing options...
sonyasmith12 Posted March 12, 2012 Report Share Posted March 12, 2012 I'm so sorry you are having such a hard time. I remember when I first started taking fludrocortisone, it didn't really help because I was not drinking enough water and taking in enough salt. It doesn't work without all three components. I'm on 0.2mg now and it made a significant difference, but we are all different. I hope you feel better soon.. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted March 12, 2012 Author Report Share Posted March 12, 2012 Thanks Sonya, yeah I only recently read to up water and salt - why doc didn't tell me I have no clue - bloody useless! Did it help the dizziness then? Quote Link to comment Share on other sites More sharing options...
sonyasmith12 Posted March 12, 2012 Report Share Posted March 12, 2012 Yes, but I don't have vertigo, like you do. Are you dizzy from vertigo or POTS?? Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted March 12, 2012 Author Report Share Posted March 12, 2012 both! big problems moving head position Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 12, 2012 Report Share Posted March 12, 2012 That stinks - I know it's a terrible feeling. My concern with this medication is - if there is an inner ear problem of too much fluid -(meineres, hydrops) medications which cause us to hold onto fluid will only make things worse. When I tried prednisone (trying to treat dizziness) I ended up with a rocking sensation. I found myself in a dilemma with one Dr. telling me I had hydrops, one said Menieres, one suspected a perilymph fistula and with all of these the recommendations are the exact opposite of POTS - low salt, even diuretics - NOT an option with POTS. Not saying this is what's happening - but wanted to mention it just in case. Did they rule out these types of conditions? Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 12, 2012 Report Share Posted March 12, 2012 one thing to watch with fludrocortisone is that it can drop you potassium levels too low, and that can make you feel MISERABLE. Have you had your potassium levels checked? Also, i found that i needed .2mg to help, .1 didn't seem to do anything for me. I also was advised to have more salt. I hope you start feeling better soon! I'm sure you've already discussed this with your doc, but do you take meclizine? Also naomi is right about the fluid, its something to consider... i hope you start to feel better soon. Quote Link to comment Share on other sites More sharing options...
Schorobi Posted March 12, 2012 Report Share Posted March 12, 2012 Florinef made me feel stronger within 24 hrs and took away the pre syncopal episodes and significantly reduced my postural tachycardia. At the initial dose of 0.1 mg daily I did however still have some episodes of tachycardia, but when I increased the dose to 0.2 mg daily, my tachycardia completely resolved. I have a significantly hypovolemic form of POTS which is why I think florinef helps me so much. Quote Link to comment Share on other sites More sharing options...
Hoosierfan Posted March 12, 2012 Report Share Posted March 12, 2012 Allie, I am in a struggle with Florinef right now, and am experiencing what you do. (For the record, I'm on .075 Florinef, 2-3 g salt supplements daily and as much water / gatorade as I can muster). I don't have POTS, but chronic hypotension. My florinef experience goes like this -- when I first get on it, I feel better for a day or two until I get hit with whatever dose my doc has prescribed (anywhere from .05 - .1). I usually have a couple of days where I feel like I am going nutty -- my head feels like it going to explode, I am super "drunk" / vertigo dizzy, and my anxiety is through the roof. It feels awful. I get hit with those episodes from about 10 am - 3 pm (I take my dose at 7 am). My bp tends to spike and I have excruciating headaches. Yet, I feel extremely lightheaded (go figure). It usually calms down in a few days. The "baseline" I then get is a bad headache, ok bp (105 - 110), and am drunk / vertigo dizzy all day. Fatigue sets in too. I can function, but probably at 60% of normal. That's how I've felt for the last 3-4 months, which is why my doc is in the process of tapering me off the Florinef (was at .1, now at .075 for 4 weeks, going to .05 in another week). I think her theory is that the increased intracranial pressure from the increased volume causes the dizziness. I can tell you that when I've been off the Florinef (and not symptomatic with syncope), I don't have any dizziness or headaches. I tried to go from .1 to 0 in about 2 weeks during January, but my adrenals crashed (not good). BUT, before they crashed and while it was getting out of my system, I noticed the dizziness and the headaches disappearing. I haven't tried any other meds so I can't give you an experience for a substitute (other than good old water, salt, and compression hose). ((Hugs)) Quote Link to comment Share on other sites More sharing options...
forevertired Posted March 12, 2012 Report Share Posted March 12, 2012 Florinef made my POTs symptoms worse. After one week on it, my chest hurt worse and I had more breathing issues, than I did before I started taking it. It also made me shake more. Quote Link to comment Share on other sites More sharing options...
Hoosierfan Posted March 12, 2012 Report Share Posted March 12, 2012 Allie, I should have said that my lesson in all of this struggle with Florinef has been to go UP slowly and DOWN slowly. When I say slow, I mean I go 1/4 of a .1 pill every two - four weeks, down or up. When I get symptomatic (like I did last year), my PCP just tends to throw me on .1 or .15 from 0, without even blinking. I think in doing that I missed the "sweet spot." (help with the hypotension but minimal or no side effects). I was shocked when I got on this forum at first to find that a lot of people take .025 as a maintenance / long term dose. So, now I'm going down by .025 every 4 weeks -- just to make sure I don't miss the "sweet spot" by going down too fast and end up being symptomatic again. It's a pain, but as sensitive as I am to ANY medication change, it's the best way to ensure ultimate success!Cheers! Quote Link to comment Share on other sites More sharing options...
shayna.mae95 Posted March 12, 2012 Report Share Posted March 12, 2012 Hi there! I started it in November I believe of last year? I started with .1 mg and I got very frustrated because it probably took a good 6 or 7 weeks for it to start working for me, but I did see a noticeable improvement. Then, in maybe January, my doctor upped it to .2 mg and it only took a few days to start seeing a big improvement. I have to tell you though that if you can wait it out, it helps me sooooo much. I can't really help you with dizziness though because that's not really one of my symptoms so I don't know how it affects that. Good luck though! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 12, 2012 Report Share Posted March 12, 2012 Hi Allie,I'm on florinef 0.1 mg in the AM and 0.1 mg in the PM. I supplement it with potassium, as it can deplete your body of it, so I think a blood test is what can tell you how much potassium you need and how often - I'm taking 2 pills with each florinef. Also, my understanding is that florinef works if you supplement your daily salt intake and drink lots of water. I'm drinking anywhere between 3 to 4 L water a day, and as much salty foods as my stomach can take.Dizziness was/is not one of my symptoms, so unfortunately I don't have an answer there, but I can tell you that my bp is somewhat higher, and my heart rate hasn't raised over 100 in quite a while. Oh, I've been taking florinef for almost 2 months now.I hope this helps.Alex Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted March 13, 2012 Author Report Share Posted March 13, 2012 Firstly, thaks all for the replies! This is the best forum.Yeah Naomi I agree with you - am concerned bout the building up of fluid in ear. Nothing exactly diagnosed - just BPPV and vestibular dysfunction. One treatment for POTS then the complete opposite for ears!Thankyou everyone. I will have to keep an eye on potassium levels. I don't think I've been drinking enough with it - doc didn't even mention to!!!The hard thing is I have been constantly dizzy prior to the florinef so.... oh man will this dizziness ever stop!As POTS doc said - POTS doesn't care what position the heads in - hence I am dizzy with all types of head movements eg to the left and looking down is worse - and that bit aint POTS????So incredibly frustratingThankyou all again x Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 13, 2012 Report Share Posted March 13, 2012 This is really interesting. When I think about it, it probably took at least a month for the florinef to work for me. And I didnt see any differences until we upped it to .2 Quote Link to comment Share on other sites More sharing options...
Tautologist Posted March 13, 2012 Report Share Posted March 13, 2012 Florinef seemed to work well for me right from the beginning (only a couple of days after I started). I titrated up to a daily does of .3mg. About 6 months later, I ended up swapping it for midodrine and then octreotide, because I was having some odd/scary thoughts, which might have been a side effect. In retrospect, it was more likely to have been the general confusion that I seem to be getting because of lack of blood to the head, rather than because of the florinef.Good luck in trying to decide whether it's worth persevering - I hope you find some relief from the dizziness soon. Quote Link to comment Share on other sites More sharing options...
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