Florinef Questions

[ramakentesh]

ive been on florinef again for about 5 weeks now. Started at a tiny 1/4 dose and it made a big difference. I was quite shocked this time. First four days I felt wired on it and in the end I took it at 6pm as it made work harder. My dizziness was greatly diminished.

Now 5 weeks in I upped my dose to 1/2 a tab (still a small dosage but im sensitive to this stuff) suddenly experienced what I originally thought was an Ankylosing Spondylitis flare or something similar.

First of all the areas behind my eyes constantly ached as did my shins and ears. I also felt overwhelming fatigue and a kind of weakness. Its lasted four days and this morning I had the familiar POTS adrenaline surges for the first time in ages. Also at night ive noticed my tachycardia is thumping in my ears more than ive ever heard.

Trying to determine whether:

1. this is the florinef headache people are talking about? its not migrainey, more fluey?

2. these are symptoms of POTS that are just more pronounced now that the florinef has stopped the dizziness?

3. this is some kind of odd reaction to the medication?

4. I need to down the dose as ive overdone it?

it appears quite different to when i initially started it. Ive never been on more than 1/4 tab.

[Hoosierfan]

Sounds like it might be the florinef headache -- mine has always been the "fluey" kind of headache -- like your head is too full and there is a lot of pressure, kind of what you get when a head cold starts. If my florinef is WAY too high, I get what feels like a migraine -- unadulterated pain, more focused. Maybe the 1/4 tab would have been enough?

[HopeSprings]

Is it possible too much fluid is being retained, causing the pressure sensation?

[Katybug]

When I tried to go from .1mg to .2 mg, I got a severe migraine (but I am very prone to severe migraine so that may just have been the way the headache manifested in me), but, as you mentioned I also got a very bad earache in both ears. In fact, I hadn't had an earache like that since I had my tonsils out.

It only took a day off of the higher dose for my migraine/earache to go away. My cardiologist told me it would be a fast test to reduce the dosage and see if it was really the florinef. So it would be pretty easy to test if it is the florinef or if it is something else.

[Guest Alex]

Hi rama,

I'm taking florinef 2x a day - AM and PM, .1 mg each time. I started taking it at the beginning of Feb with no changes in dosage since.

I get occasional pressure like headaches, as well as uncomfortable BP swings/adrenaline surges every now and then (almost daily since the beginning of this month) plus some strange aches in my legs while at rest (my dr doesn't have an explanation for them, and doesn't think florinef might be the cause for them).

I have never been dizzy before the florinef or after I started it, and despite the 3-4 liters of water a day and increased salt intake my BP is usually in the 100's/70's (which has been my comfort zone).

I can't say I got the tachycardia under control 100%, but it's not as bad as it used to be (might be the propranolol and the mestinon helping there).

You probably know this already but you might want to ask your dr about supplementing your potassium (some say even magnesium) intake, as florinef is known to deplete your body of it/them.

Also, if before going to bed my BP is a bit higher than my norm, I only take 1/2 florinef pill rather than a whole one.

Good luck figuring things out.

Alex

[ramakentesh]

Cool great answers thanks - ive noticed that since ive gone back to the 1/4 tab its still there but not as bad, although im also now getting morning adrenaline surges at the lower dose. The balancing act I guess...

The pain does just feel like before you get a head cold but its been there now for 6 days solid - really bad from the day I upped it and lesser each day ive gone back to the 1/4 tab.

My dizziness however has probably been the best its been in ages though so that is nice. I had a week or so where I just felt awesome - unbelievably good. I even started planning an overseas trip.

[issie]

I hope it all settles out for you and you feel better soon. It's so hard to figure out sometimes - is it the medicine or something new developing. We have to do so much experiementing on ourselves to figure these things out.

Are you coming to visit us in the States? I hope you're able to travel and do what you'd like with your life and have the health to do it. (I LOVE TRAVELING.)

Issie

[Hoosierfan]

Yeah, Rama, my headache never went away in the 17 or so months I've been on it, so I finally decided it wasn't worth it and we are trying to get off. I was hoping my body would adjust to the Florinef, but it never quite did. The headache was significant enough to make it hard to concentrate at work, read, etc. (kind of difficult to do a good job as an attorney when your brain is foggy from too much intracranial pressure!!!)

I've also found that I get the same kind of headache from the SNRI I take (Effexor) when my dose is too high OR I take it in combo with the florinef. So, I think there is something with the mix of meds that makes the headaches worse. When I was either just on florinef or am just on effexor (at the right dose), the headaches are not there.