FLORINEF---DOES IT HELP?

[hbw1]

I was recently diagnosed with Dysautonomia but have suffered for years with the symptoms
of it....tilt table recently done and it was quickly diagnosed!
My question:
Does Florinef help?
I take about 100 mg of Midodrine/day, 20 mg every 2-4 hours, just to keep my BP up
in a normal range, so that I can function without being dizzy, lightheaded, nauseous...etc.
I also take TOPROL XL ER 25 mg, three times a day, to help with my severe tachycardia (130 when
I can roll myself out of bed) haha!
The TOPROL seems to really help the Tachy.
The Midodrine helps my BP also, but I have no quality of life having
to take the Midodrine and my blood pressure every two hours.
My cardiologist recommended Florinef, (yet another medication to try in this roller coaster
called Dysautonomia).
Does the Florinef HELP? Please anyone that takes it any feedback would GREATLY
appreciated!
I do not want to gain weight and I heard that you can gain weight on it.........but
if it helps me feel better, I do not care about the weight.
:)
OH, and BTW I PUSH water and Gatorade to the point of getting sick on the fluids.
It does seem to help though....
and I salt things heavily now too.....the Dr told me----Water and Salt!
THANK YOU FOR HELPING!
HBW1

[lfreem02]

I was put on Florinef and Pindolol after my tilt table test, and the first couple of weeks were rough.  By late afternoon I was shaking from high blood pressure.  The cardiologist told me to hang in there and give it a little more time.  It did finally level off.  I was still having issues with lightheadedness, so a neurologist recommended that I switch to Midodrine.  The Pindolol and Florinef did help with episodes that I would have where I would have weird feeling in my stomach (maybe blood pooling), shortness of breath, and then lightheadedness.  I am still taking the Midodrine and Celexa, but still have the lightheadedness, fatigue, pounding heart, blood pressure swings (in the high direction), and heartrate that can be in the 70's, or above 100.  I am thinking it is time to go back to the cardiologist.

It sounds like if the Midodrine is not doing the job, Florinef may be a good option.  I have seen a lot of people on different forums who are taking both.  I have also heard good things about a low dose of Propranolol (beta blocker).

[Dina723]

Hi! Sorry nobody has replied to you yet. I don't check in everyday, but I can share that I am on Florinef. I take it with a beta blocker. Florinef increases your blood volume by retaining more sodium in your body. My doctor carefully monitors my sodium and potassium levels while I am on it. Your body will excrete potassium, so you must be careful to eat a pottasium rich diet. Because the Florinef is doing its job for me, my dr. said not to overdo it with salt loading. But everyone of us is different.

The Florinef was the first thing to help with my leg pooling. For me that was a dibilitating symptom because it was painful and I could not stand or walk very much. My bones and joints just hurt so bad too. It has improved a lot after being on it for two months. Not perfect like before I became ill, but improved to the point that I can go out more.

Then about 6 weeks ago I was put on a beta blocker and that really brought my heart rate into line. And both of them raise my blood pressure.

It's such a process to find what works. So hang in there and think about trying it. If you have more questions feel free to ask!!