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Re: Trying Midodrine

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Barbara,

You wrote:

>Chuck

> tried midodrine back in 1998, but I don't think the internist had a

clue

> how to start it. Seems it should be gradual. Anyway, Chuck took it

a

> couple of days, had tingly scalp and funny head feeling and stopped

it.

> Might try that again, now that we've all had more experience.

>

Tingly scalp is USUALLY the most annoying and weird feeling of the

first few days. It does usually get better. Later patients notice

that the medicine is working b/c their scalp is tingling, but it does

not bother them then. I do not even feel tingly at all now. Other

side-effects include goose-bumps in some people. Please do try it

again, though. These side-effects pale in comparison to having

orthostatic hypotension; and once you know that these side-effects

are not a big deal, the patient is quite okay with those feelings.

This is not to say that there are some people who cannot take

Midodrine.

You may already know all of this. So, excuse me if you do. It helps

tremendously to chart bp and heartrate when starting Midodrine.

Usually, a chart that records sitting and standing for 1 and then 2

minutes is a good minimum. Take measurements when you take the

medication and then at the one hour point and two hour point. When

you get the proper dosage your bp will be right on. Pretty neat. You

know if it helps right away.

After that, it gets trickier. Many doctors do not realize that the 3X

day is not sufficient for a lot of patients. The Midodrine experts

often have their patients on more frequent but lower doses throughout

the day. OR, in my case, the doctors had me take mid-doses (1/2 of my

normal dose) throughout the day. So, I take 10mg every 5 hours with a

5 mg mid-dose, i.e. 8 AM 10mg 10:30AM 5mg 1:00PM 10mg 2:30 mg 5 mg

etc. There are patients who have to take even more. And there are

patients who take much less.

I just wanted to make sure you give it a shot. The tingly scalp is to

be expected. When I took at as a research drug, I joked that at least

I know that it is not a placebo. You know it is doing its job

constricting blood vessels.

Good Luck. And keep in touch with your doctor. Some doctors like to

do 15 minute standing tests (taking your pressure and heartrate every

minute) when seeing you. This is much easier than the tilt table and

quite helpful in gauging bp and heartrate medicine needs. If need be,

you can do it yourself (with some help) at home.

Cheers,

Zac

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Zac,

I had forgotten about the goose bumps. Rob had those too, but they too seem

to have gone away. We are fortunate that he both responds to and tolerates

the medication very well.

Carol & Rob

Lexington, MA

Re: Trying Midodrine

> Barbara,

>

> You wrote:

>

> >Chuck

> > tried midodrine back in 1998, but I don't think the internist had a

> clue

> > how to start it. Seems it should be gradual. Anyway, Chuck took it

> a

> > couple of days, had tingly scalp and funny head feeling and stopped

> it.

> > Might try that again, now that we've all had more experience.

> >

>

> Tingly scalp is USUALLY the most annoying and weird feeling of the

> first few days. It does usually get better. Later patients notice

> that the medicine is working b/c their scalp is tingling, but it does

> not bother them then. I do not even feel tingly at all now. Other

> side-effects include goose-bumps in some people. Please do try it

> again, though. These side-effects pale in comparison to having

> orthostatic hypotension; and once you know that these side-effects

> are not a big deal, the patient is quite okay with those feelings.

> This is not to say that there are some people who cannot take

> Midodrine.

>

> You may already know all of this. So, excuse me if you do. It helps

> tremendously to chart bp and heartrate when starting Midodrine.

> Usually, a chart that records sitting and standing for 1 and then 2

> minutes is a good minimum. Take measurements when you take the

> medication and then at the one hour point and two hour point. When

> you get the proper dosage your bp will be right on. Pretty neat. You

> know if it helps right away.

>

> After that, it gets trickier. Many doctors do not realize that the 3X

> day is not sufficient for a lot of patients. The Midodrine experts

> often have their patients on more frequent but lower doses throughout

> the day. OR, in my case, the doctors had me take mid-doses (1/2 of my

> normal dose) throughout the day. So, I take 10mg every 5 hours with a

> 5 mg mid-dose, i.e. 8 AM 10mg 10:30AM 5mg 1:00PM 10mg 2:30 mg 5 mg

> etc. There are patients who have to take even more. And there are

> patients who take much less.

>

> I just wanted to make sure you give it a shot. The tingly scalp is to

> be expected. When I took at as a research drug, I joked that at least

> I know that it is not a placebo. You know it is doing its job

> constricting blood vessels.

>

> Good Luck. And keep in touch with your doctor. Some doctors like to

> do 15 minute standing tests (taking your pressure and heartrate every

> minute) when seeing you. This is much easier than the tilt table and

> quite helpful in gauging bp and heartrate medicine needs. If need be,

> you can do it yourself (with some help) at home.

>

> Cheers,

>

> Zac

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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