Midodrine

[Guest guest]

Angie:

I definitely understand your anger and frustration. That's how I felt yesterday

after having an appt with a new cardiologist. He was arrogant, wouldn't let me

say anything and hadn't reviewed my records. Yes, I did have a positive tilt

table although that was 8 years ago. I have low blood pressure (most of the

time, however it does " spike " frequently and is shocking)......my BP normally

runs 90/60, or if I am tired, it goes down to 70's/50's, then for no reason

whatsoever, it will go up to 160/100!!!! Doesn't stay there long, but it DOES

happen and there is something crazy going on (and has for years, but this is

new, the high BP and especially the higher diastolic readings are extremely

odd). I have NMH, POTS, low blood volume. My heart rate runs very fast.....100

- 120.....most of the time, although it will come down to 90, or even

80.....then it has gone over 200!!! Thankfully that stopped once I started

getting IV fluids. Even with the fluids now (4 years), because I moved, and

have been overdoing with lots of stress, I started having irregular beats

again....my internist did a 24 hour holter and said it was extremely irregular

and referred me to this cardio. At least I'll get an echo and a cardiolite

stress test. He suggested doing the one where they inject you so you don't have

to " walk it " ...speeds up your heart - NO NO NO....I declined. I'll " walk it " ,

thanks. I can't have anything trigger my heart to race, too frightening and

once it gets up there, it won't stop.

I have been warned for years NOT to take beta blockers....BP too low and with a

24 hour holter, I'm all over the place, going from bradycardia to tachycardia

(in my sleep), BP dangerously low, then up it goes. This jerk yesterday tried

to get me to take Florinef....been there, done that - it makes me VERY ill and I

can't function.

I tried it twice - several years apart.....BAD NEWS. He said he has NEVER heard

of anyone unable to tolerate Florinef.....well, he's met one now. I nearly

walked out, but I did want the testing ordered. He wrote the prescription for

Midodrine at 10mg.....I came home, looked it up and found that it is prescribed

as low as 2.5 and 5.0....and he's starting me out HIGH????? And three a day? I

don't think so.

That prescription was over $350.00...........even the pharmacist has a strange

look on her face...asked if I had taken it previously and then suggested she

just fill a week's worth and see how I do instead of spending all that money on

something that may not be useful.

I REALLY appreciate your comments. Needless to say, I'm not going to take it. I

can't afford to lose ground and be tossed back in bed. At least I am quite

functional, just not terribly comfortable with the dizziness and irregular heart

beat - it feels like " thuds " and can be so hard it nearly knocks the wind out of

me. I did find that taking magnesium helps somewhat and I make sure I get

enough potassium in my diet. Another doctor to cross off my list!

Thanks again,

Message: 12

Date: Fri, 01 Jul 2005 18:23:42 -0000

From: " toangiem " <toangiem@...>

Subject: Re: Midodrine/Proamatine

,

Have you had a tilt table test? I would NOT take this script

without having a tilt done first. Read my post above that

starts " Tilt... "

When I am sitting still, my BP often looks low, like I need to get

the pressure up. However, without any help from any meds, I have

discovered through those tilt results that my diastolic pressure

gets pretty darned high on its own. At the end of the test, my BP

failed and I went hypotensive but that was only at the end. I was

diastolically hypERtensive prior to that.

No one EVER caught that the original cardiologist did not actually

view my tilt when he made my diagnosis (he used a report written by

the hospitals cardiologist that consistently stated my BP 10 points

too low!), blew me off, and started pushing fluid builders,

vasoconstrictors, etc. So, for 3 years I have been trying to

appease the medical community by constantly trying to increase my BP

to suit them. Again, when I am sitting, it often looks low.

Without a careful review of these results there is no way to tell

that my pressure was actually too high when I was upright. Thus,

the source of my fatigue problem. Orthostatic diastolic

hypertension. Not just hypertension or diastolic hypertension.

Only orthostatically. What a mess.

Midodrine/Proamatine made my heart go crazy, I had a BIG headache

and I felt like I could not breath and I will NEVER take it again.

But, again, I already had too much pressure. Make certain that is

not the problem before you agree to take it.

Good luck,

Angie

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[Guest guest]

Hi there,

I do not take midodrine, it is my next one to try. I tried metropolol and it

was a disaster.

I got some help over at this group. They are not CFIDS'ers but they take all of

the various OI medications and have a lot of experience.

NCS_F/?yguid=275214264

also www.dinet.org is a helpful website.

Since I have not found a good cardiologist, I have not made progress with the

medications but I have learned that it is trial and error and may require a

combination of medications to get relief (not always at full doses). This

requires a knowledge, patient doctor.

So currently, I am taking 0.1 mg of Florinef, high quality sea salt and

compression hose. I also do all of my activity at the end of the day so that my

brain is functional during the day.

Sorry I couldn't be of more help, maybe someone will jump in here.

Marti

>

> Experimental Treatment of CFS/FM/etcHi, I've recently started taking Midodrine

for my othostatic intolerance. I wasn't able to get it in Australia and have had

to have it imported from Spain (to India where I'm currently living). My doctor

was lothe to prescribe it but I showed him a published article where it was

found to be helpful in treating CFS symptoms. Does anyone else here take

Midodrine for their CFS? I'm interested to knowing dosage? length of time taking

it? any effect? etc

>

> I'm currently taking only 2.5mg x 3 times per day which is low enough that I

don't get any unwanted side-effects. (I did get some goose-bumps and

skin-crawling when I was taking a higer dose). It seems to help with providing

extra blood to the brain for thinking although I haven't noticed much change

with the OI. Anything that helps even a little bit with the CFS symptoms is

greatly appreciated of course. :-)

>

>

[Guest guest]

Ive been taking Midorine for over a year now. It only helps with the symptoms,

and is not a treatment. I take 5mg 3x a day or as needed. At first I got the

goose bumps side effect, but it goes away after youve been using it for a while.

It does make me feel a little better, but not a whole lot. I have POTS so I am

always dizzy while standing. In all essence it is a safe drug, my only wish is

that they make it in a time released pill form. Then we would only have to take

one a day....

> >

> > Experimental Treatment of CFS/FM/etcHi, I've recently started taking

Midodrine for my othostatic intolerance. I wasn't able to get it in Australia

and have had to have it imported from Spain (to India where I'm currently

living). My doctor was lothe to prescribe it but I showed him a published

article where it was found to be helpful in treating CFS symptoms. Does anyone

else here take Midodrine for their CFS? I'm interested to knowing dosage? length

of time taking it? any effect? etc

> >

> > I'm currently taking only 2.5mg x 3 times per day which is low enough that I

don't get any unwanted side-effects. (I did get some goose-bumps and

skin-crawling when I was taking a higer dose). It seems to help with providing

extra blood to the brain for thinking although I haven't noticed much change

with the OI. Anything that helps even a little bit with the CFS symptoms is

greatly appreciated of course. :-)

> >

> >