Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
So I just was with a friend doctor and was told the doses recommended for OI was 10mg 3 times a day but I am on 2.5 and still symptomatic.
What dose do you use of midodrine???
TX,7
Are you taking 2.5 mg three times a day? Or just once a day?So I just was with a friend doctor and was told the doses recommended for OI was 10mg 3 times a day but I am on 2.5 and still symptomatic.
What dose do you use of midodrine???
I forget the dose I was on except my autonomic doc (and others) say to only take it twice a day as it can be dangerous for it still to be active when you lie down at night. From memory, I was taking 5 mgs twice a day.
TX everybody!! I am doing dose every 4hours.
So I am doing great on 5mg, I went up to 7.5 yesterday but I think I will stick to 5mg. I am wondering if I should lower the salt, if I have to raise BP is it better with midodrine than salt tablets?? I take 4mg of salt now but I am symptomatic, with midodrine I do not get symtptomatic.
Are you taking 2.5 mg three times a day? Or just once a day?
You probably already know this but midodrine lasts a relatively short time before it wears off. That's why it is usually taken multiple times a day. This page at rxlist.com ( http://www.rxlist.com/proamatine-drug/indications-dosage.htm ) also lists that recommended dose of 10 mg, 3 times a day.
I actually take midodrine 4 times a day. I take 5 mg at 3.5 hour intervals (approx., not exact). [edit - so that adds up to 20 mg per day total]. This works for me because while I may rest a lot I during the day I never lie down flat. I rest in a recliner with my feet up. And I never sleep during the day.
On those days when I wake up late, or go to bed early, then I take midodrine three times per day instead of four and space them out more. If there's some other reason that I need to lie down (migraine, flu, etc.) then I skip one or more doses so that I'm not taking it while lying down. And I always make sure my last dose is at least 5 hours before going to bed.
Even while on midodrine (plus florinef, salt tablets, potassium, extra liquids, and a cup of coffee!) my resting (sitting) systolic blood pressure rarely gets up to even 120. It's usually around 100, maybe 105. And my BP is also fine while lying down. Folks who have moderate to high blood pressure, or who have blood pressure swings, might not be able to take this drug. But if your BP is not going too high on your current dose then it seems reasonable to ask your doctor about trying an increased dosage.
Note that some folks on the forum have reported bad side effects but I don't remember who had the problems. My only side effect has been the tingling, pins and needles feeling (mostly on the scalp).
I hope this is helpful!
Can you expand on this a little bit more? This sentence sounds so ominous, like I'm doing something dangerous, but I'm not sure what you're trying to say. Is the concern about cortisol levels being too high? Too low?I hope you've checked your cortisol levels..
IF your blood pressure is still that low even on Florinef you have low cortisol. I can almost guarantee it. If you have low aldosterone you most likely have low cortisol anyway. Just something I would check out if I were you.Can you expand on this a little bit more? This sentence sounds so ominous, like I'm doing something dangerous, but I'm not sure what you're trying to say. Is the concern about cortisol levels being too high? Too low?
Thanks!
Not since I increased it. I have notice my temperature on hands and feel to be more regulated (just noticed as you mentioned it). I do not take my body temperature but when I go to Dr and it always normal.lnester do you have cold hands/feet and or a low body temp still?
Have you tried florinef?Not since I increased it. I have notice my temperature on hands and feel to be more regulated (just noticed as you mentioned it). I do not take my body temperature but when I go to Dr and it always normal.
I am on it too. I take 0.15 (pill and a half) a day.Have you tried florinef?
Thanks for the extra information!IF your blood pressure is still that low even on Florinef you have low cortisol. I can almost guarantee it. If you have low aldosterone you most likely have low cortisol anyway. Just something I would check out if I were you.
And that alone didn't help the OI?I am on it too. I take 0.15 (pill and a half) a day.
It did help, it took me out of bed but then I couldn't stay upright for long periods of time. The funny thing is I am consider "mild" dysautonomia!!! I don't want to imagine life where you have it severe!
The midodrine gives me more of a normal life.