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Florinef questions

J

Justin30

Senior Member
Messages
1,065
Hello Everyone and Anyone that wants to fill in,

My questions are about Florinef/fludrocortisone

I have seen how to titrate up by .25mg per week

I have been pscribed the med up to 1mg.

Tried propranonlol in the beginning and it made me sick.

Here is my conondrum:
  • Very sensitive to meds
  • My symproms have waxed and waned so much in th last 2 months
  • 4 weeks of 30 to 70 bpm increase upon standing mostly in the morning but some for higher spikes or after rest
  • 2 weeks of 30 to 40 Bpm increases while standing throughtout the day
  • 4-5 days of sore throat very mild increases in BPM but higher heart rate while at rest (usually 57-65) still had Bpm upon standing close to 30 bpm
  • And several days mixed in with virtually no OI/POTS issues
Symptoms attached to POTS/low blood volume which I am guesssing while waiting to get in for testing are:
  • Blurred vision/ caused by ME and POTS
  • Dizzy while standing when bpm gets up to or over 90 bpm
  • While lying down my feet are very cold even with thick wool socks on
  • Brain fog after spikes to 90 bpm cant figure out what i am looking for etc. Usually food or Supplments
  • While lying on back holding my phone my whole hand and forearm will go numb. I then put them down and sensation comes back
  • I also wake up with numb hands and forearms
  • Chest pain with flu like symptoms
What I have done to try to counteract this that has proven unsuccessful or short lived:

- 5 days of compression stockings while symptoms were bad
- Licorice root and Adrenals (2 types)
- increase salt and potassium intake through V8 even though I try to do all organic (mild improvement in POTS but payback is sore stomach and intestinal pain)

Poor man tilt table results on a rough day:

Laying down
107/60
60 BPM

Laying down to Upright up 30 sec in between
111/83
104 BPM

Upright 2 mins
105/77
BPM 102

Upright 5 mins
107/84
BPM 105

Upright 10 mins
111/78
103 BPM

I had almost like an itchy/burninh sensation that wast severe but annoying in my lower legs...I assume pooling.

My question is does this look like low blood volume to you? And do you think that florinef is worth the a try?

Other option prolong ME Specialists recomendations and wait to see POTS Dr to may or may not get testing?

Thanks in Advance,
 
Last edited:
C

CW1

Messages
23
Justin,

I would definitely give Florinef a try! My POTS isn't perfect, but it got so much better w Florinef

It takes a couple of weeks being on .1 mg to feel any affect, so if you are titrating up it could be a little while before you feel better but it's very worth it if it does work for you

I got headaches at first, but now I have no side effects from it
 
H

Hazel1862

Messages
7
I am starting florinef tomorrow morning and feeling pretty nervous as I heard it had very bad side effects particularly regarding mental health. Anyone else had bad side effects? did you try florinef in the end?
 
Jeckylberry

Jeckylberry

Senior Member
Messages
127
Location
Queensland, Australia
Hi. I'd like to renew this thread if you're out there and ask how you're going with the Florinef. I was prescribed it a few months back, took it at half dose them .1 mg a day. It gives me headaches. It put my BP up but didn't drop the hr. Because I didn't have improvement, the cardio is now saying I may not have Pots. But as far as I am aware pots is hr goes up over 30bpm upon standing, not anything about OH. So confused!
 
Jeckylberry

Jeckylberry

Senior Member
Messages
127
Location
Queensland, Australia
Hazel1862 said:
I am starting florinef tomorrow morning and feeling pretty nervous as I heard it had very bad side effects particularly regarding mental health. Anyone else had bad side effects? did you try florinef in the end?
Click to expand...
I was scared too. It didn't do anything dire like that to me and I am fairly sensitive to anything with mind altering stuff in it. All it did was give me a new feeling of fullness in my upper body which was interesting and headaches. It puts your BP up to counter the drop that makes people faint. But I don't have OH just the tachy so I'm still trying to get answers.
 
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