How Much Midodrine?

[Guest humanb4monitor]

Do people take who take it? What else is out there? AND WHAT does it dew?

I realized that I have stuck with the SAME doses since diag and 100X's sicker!

baby dose.

2.5 twice a day and 2 mg of Flourinef.

[Guest humanb4monitor]

well, that's 11 who don't take it. Any takers?

[ByteMe58]

Human,

I've been taking it from the start. 10 mg x 3 a day.

I just had my first followup appointment with Dr. Grubb last week. He is increasing my mestinon, but leaving midodrine dosage the same.

It is supposed to constrict blood vessels, so I imagine you have a blood pooling issue. Do you hands and feet turn red and your veins pop out when standing for a period of time?

My hands get red with white spots, then start turning purple, even if I just hang them straight down at my side when sitting for a few minutes.

The veins in my feet expand so much, the veins across the top of my feet burn and it becomes painful to stand still.

Sound familiar?

Frank

[houswoea]

I take it- 5 mg three times a day.

I don't faint, but you're not supposed to lay down and thats really hard. I like it better than florinef though.

[Rachel]

I take 10mg every four hours during the day. A smaller dose doesn't give me any noticeable benefit. Midodrine is a vasoconstrictor. That means that it helps your blood vessels to constrict, thus pushing blood back up to the top half of your body.

Midodrine raises blood pressure, so some people can't take it if they will be lying down. It doesn't raise my supine bp, though, so I am allowed to lie down as much as I need to while taking midodrine.

Rachel

[ddschool]

I can only I take 2.5mg three times a day - when I tried taking higher doses, it lowered my HR even more (vagal nerve response) ....

[peppermint patty]

A couple of weeks ago I was just prescribed midodrine (10 mg 3 x a day), but have been too scared to take it. I was officially diagnosed with POTS at the time, but I have these strange blood pressure spikes when laying down that the drs are concerned about (being tested for pheo). I know I am off topic, but has any one had severe high blood pressure from it?

[Rachel]

Patty,

I do know of at least one person whose blood pressure was raised too much (though not dangerously high), and she couldn't tolerate a 2.5mg dosage of midodrine.

Did your doctor say to start out at a 10mg dose? Usually midodrine is supposed to be titrated up until you find a good dose. I wouldn't recommend starting out at 10mg. Usually someone starts at 2.5mg, and then goes to 5mg a week or two later if 2.5 was tolerated well. If 5mg still doesn't help, then the dose is upped to either 7.5mg or 10mg.

I hope your doctors can find out the reason for your bp spikes.

Rachel

[Guest humanb4monitor]

compare and contrast???

Thanks you all so so much. It's weird that our chemistry can change all the time--everyones. Midodrine can raise blood pressure too much for some, and others it helps. It is still a baby does though.

Flourinef HELPED like NEVERLAND at 1st and guess wha thapened?

This is true: I was thown into a bad situation and all the benefits went away and never ever came back. How weird is that. I mean I felt more calm that ever ever in my life then GONE. That was March 2004 . I still take it but it's like it's invisible.

Thank you again.

[Birdlady]

The tingling sensations were so awful for me that I just had to stop it. I also felt completely out of my mind on it for some reason. I was only on 5mg and every day I couldn't wait for it finally get out of my system...

Edit: Since you are taking a lot of florinef, do you get your potassium levels checked often? It will really throw those out of balance, which can cause problems of their own.

[peppermint patty]

Rachel, Thanks for the info. I am going to talk to my doctor. Pat

[Guest humanb4monitor]

yeah--IF I am off beforehand, the midodrine has that tingle. Like your hair is growing but now it is subsdsing.

I only take .1 mg or whatever twice a day.

My potass was low a year+ ago. Then right after surg. in the hosp it crashed hard but that was common I hear.

PLUS the pots info said that anethesia can do that. It was a 7 hour surg.

They amaze me--surgeons! I mean amazing, then do they like :

GO TO LUNCH!

"OK--sew her up. LUNCH!" COOL.

It is incredible when you think about it but BOY did it kick the rear of my POTS, CFS and sleep issues. As well as sadd. My reg doc said that, that level of surg trauma can relase all kinds of chemicals etc so patience and goodness to self. And from folk here who reach out and have hearts andminds beyond the norm.

I read an article that we have srtonger psychological strengths! That has to be IT cause GEEEZE!

Yet the surg part they say I am blowing them away that that recovery. Humor from heaven!!

[Guest humanb4monitor]

what is mestotin and it does???

This data is weird but makes sense:

I am really REALLY chemically sensitive. As many are.

BUT my fatigue and sleep problems have ebecome so so bad, that things that usually would have me dancing on the ceiling can either really help with no side effects or put me to sleep. When they put me to sleep--that scares me.

Can we count on anything.

Guess that is the Spoon Theory.

I need to ramp up lotsa stuff. Thank you all so much. Off to the gym in a while. AND the WAY to get there is to NOT ALLOW any junk in to my space between now and dhen. Right? derailment.

Even the phone.

(((ooxoxoxxooxoxo)))

[iheartcats]

I usually take 10mg in the AM when I get up, 5mg at lunch, and 5mg at dinner. It helps keep my blood pressure up enough (especially since I'm on a Beta Blocker).

[Simmy]

I'm on 10mg, 3 times a day. It helps to keep my bp up when I stand, but also raises it a bit too high when lying down (+20/+20). The chills and hairs standing up are certainly not comfortable, but I'm getting used to them.

[shanying418]

I can only I take 2.5mg three times a day - when I tried taking higher doses, it lowered my HR even more (vagal nerve response) ....

I take 5mg three times a day- 8am 12, 4pm. You've mentioned vegal nerve response, I'm wondering how is that defined? My HR drop from 115 to sometimes 61... though my body seems to rebel every time my HR drop to around 60 ish, my cardio doc told me it's okay and not to worry. Yet . . . I thought midodrine is not suppose to cause chest pain. . .

[Simmy]

Hi Shan, welcome.

When you say the Midodrine drops your heart rate from 115 to 61, is that both while standing or lying down? Either way, if both those numbers were taken in the same position (posture), that's quite a huge drop from just 5mg of Midodrine. With my five POTS meds I'm lucky to keep my standing heart rates down from 150 to 120, which also means my resting heart rates are down from 65 into the 40's, that's mostly when I feel those minor heart pains.

[shanying418]

Hi Shan, welcome.

When you say the Midodrine drops your heart rate from 115 to 61, is that both while standing or lying down? Either way, if both those numbers were taken in the same position (posture), that's quite a huge drop from just 5mg of Midodrine. With my five POTS meds I'm lucky to keep my standing heart rates down from 150 to 120, which also means my resting heart rates are down from 65 into the 40's, that's mostly when I feel those minor heart pains.

Hi Simmy, Thanks for answering. The drop from 115 to 61 is HR while sitting down. I know it's quite a huge drop which worries me a bit. I did read from Mayo clinic that one of the rare side effects from Midodrine is slow pulse. Basically, my PCP believes the huge drop is b.c. of Midodrine but my cardio doc. seems to believe that means Midodrine is working. I'm just concerned b.c. I don't seem to feel well when my HR drops to that number. Tks again.

[Simmy]

Oh, it is working, just perhaps too well. That's a seriously monstrous drop from just the Midodrine. If it's 60bpm sitting after taking the 5mg, what is it lying down? That change in posture could easily drop it another 10 or even 20. I've been at a lying down 47bpm average for some time now and my cardiologist isn't concerned unless it dips below 40. My lowest recorded awhile back was 37. And no, it's not a fun feeling when it gets too low. Have you also checked your blood pressure?

[shanying418]

Oh, it is working, just perhaps too well. That's a seriously monstrous drop from just the Midodrine. If it's 60bpm sitting after taking the 5mg, what is it lying down? That change in posture could easily drop it another 10 or even 20. I've been at a lying down 47bpm average for some time now and my cardiologist isn't concerned unless it dips below 40. My lowest recorded awhile back was 37. And no, it's not a fun feeling when it gets too low. Have you also checked your blood pressure?

Yes. I've checked my blood pressure. It's within the normal range but compare to when I'm not on medication, it's actually lower. . . Any suggestions?

[Simmy]

Again strange, Midodrine raises bp. Odd that it's lower after taking it.

You said that your heart rates sitting are about 115 off meds and about 60 after Midodrine. If you don't mind my asking, what are they standing, and what are they lying down? Both with and without Midodrine.

[shanying418]

Again strange, Midodrine raises bp. Odd that it's lower after taking it.

You said that your heart rates sitting are about 115 off meds and about 60 after Midodrine. If you don't mind my asking, what are they standing, and what are they lying down? Both with and without Midodrine.

I don't know my blood pressure before being on medication. I only know that before I'm on medication, my HR goes up to 150 while standing (lying down... don't know...) As for today, with Midodrine, my standing blood pressure is 96/56; HR: 100. Lying down is 104/64 with HR 72.

[shanying418]

So I actually went and find out my BP and HR while not on midodrine. It was 123/81 HR 115 while sitting down. This is as close as I can find. I didn't use to ask all these info until recently. In other words, POTS taught me to be organized--even with the tiny little stuffs!

[Simmy]

Those numbers sound much more reasonable. My initial concern was that your sitting heart rate on the med was 61, which led me to think it might be in the 40's lying down. We're told to be aware of possible blood pressure spikes on Midodrine when lying down, which also means lower heart rates, so just keep an eye on it. I wouldn't be concerned unless it fell into the low 40's while lying down.

[shanying418]

Thanks! I'll keep an eye on it...