Hmmmmmm. I appear to be the last pwc taking florinef.
Hi,
I think there are quite a few other folks on the forum who are still taking florinef (fludrocortisone) -- but maybe they have just not seen your posts about it? Anyway, since I happened to see post, this I'll be happy to respond.
I don't have any detailed observations of my blood pressure, etc. (I saw a list in your other thread). But I can tell you what is working for me just in case any of it is helpful.
However we're probably different in a lot of ways. For example, I don't have any blood glucose problems after eating fruit. And I think you've posted other symptoms or reactions (gluten intolerance and/or celiac? I have trouble keeping folks on this forum straight, sorry!) that are quite different from mine. So, please take this with a huge grain of salt, as the saying goes!
I'm currently taking a combination of midodrine (5 mg, 3 or 4 times a day), fludrocortisone (1/2 tablet = 0.05 mg, once a day), time released prescription potassium (Klor-Con or generic equivalent, 10 Meq = about 750? mg, once a day) and salt tablets (4-5 Thermotabs or equivalent per day). I also drink about 3 liters of water daily.
Sometimes (I'm not very regular) I substitute one of the liters of water with a liter of homemade electrolyte solution. I mix up salt, potassium chloride, and water, plus a tablespoon of dextrose (if I'm going to be skipping dinner that night) about once or twice a week. I try to save this up for times when I need some extra energy. That electrolyte solution, plus not eating dinner, is usually helpful for my sleep. Note -- no sleep apnea or GERD, so that is not why not eating dinner helps my sleep. It has something to do with the Orthostatic Intolerance/NMH that I have.
I found that adjusting my drug and supplement dosages based on my symptoms (how I feel) works much better than trying to measure my blood pressure and heart rate in detail. Part of this is because just by stopping to measure my BP it will be different than it is while I am actually doing something. So it's not a very accurate measurement.
Also, when I was on the tilt table test I started having symptoms after only about 5 minutes (nausea, dizziness, muscle twitching, etc.). But my huge drop in blood pressure did not happen until after 20 or 30 minutes. So I think, at least for some people, there may be a delay between when the symptoms start and when there's a measurable drop in the blood pressure.
The other thing is I try to give things time to work. My understanding is that it takes at least a few days before fludrocortisone starts working. Midodrine seems to kick in much faster but it still may take the body a few days to get used to it. Also, there are many, many other variables that contribute to how I feel (how I sleep, what I eat, time of the month, other sources of stress, etc......). So, it's hard to tell whether a new supplement or modified dosage has made me better or worse unless I try it for a week, or at least a few days in a row.
I'm not an expert on this stuff and my combination is a whole lot of trial and error. And I still get crashes where I can't figure out what I did wrong other than just doing "too much" -- even when that same amount didn't seem to be "too much" a few weeks earlier. Oh well.
I hope this is helpful! I think I rambled on a bit too long. But if you have specific questions I'd be happy to share more about what I'm taking and why.