1996 Shy-Drager Conference Transcripts - 2 of 4

[Guest guest]

Friday, October 11, 1996

(Panel discussion between SDS patients, caregivers, family members and

Drs. Benarroch, Coghlan, Chokroverty, Low, on and Schatz.)

Q: Of what benefit might Midodrine be to my wife?

A: (Dr. Coghlan) Several of us have participated in studies that

pharmaceutical has performed in the United States. The drug

was developed in Germany many years ago. We have been privileged to

use Midodrine since it is a medication that substitutes partly for the

lack of the regulatory nerve control of blood vessels. It stimulates

the receptors of those blood vessels directly to try to generate a

narrowing or constriction of those vessels to prevent pooling of the

blood in the veins when you stand up and to tighten the little

arteries enough to help keep the blood pressure. Midodrine provides

the circulatory enough blood pressure to allow the blood flow to the

brain to remain adequate so that people can function and not feel weak

and pass out. We try doses of this medicine so that it will help

drops in blood pressure and therefore make life at little more

possible for persons with this neurological disease.

(Dr. Low): I think the mechanisms of the drug are becoming much better

known and as Dr. Coghlan said, we know something about the blood

levels of the drug and we know its duration of action is approximately

2-4 hours. It raises your standing blood pressure about twice as much

as your supine blood pressure. I think one of the main things we have

learned over time is that we can control these blood pressures more

safely and one of the advantages of Midodrine is that we have become

less dependent on what we have used a great deal in the past, which is

Florinef. In order to control blood pressure with Florinef you

usually have to take quite large doses. What that does is that it

raises your blood pressure and it also raises your blood pressure to

quite high levels when you are laying down. Then you have a blood

pressure that it quite high at night when it should not be. One of

the advantages of Midodrine is that you can reduce your dose of

Florinef and you don't take your dose of Midodrine after 6 pm so that

at night your blood pressure does not raise as much as it otherwise

would. I think I will finish up with just one other thing. One of

the things we have learned over time is to give the patient better

control of their lives as well as their blood pressure. Dr. Streeten

mentioned the study that looked at raising blood pressure by using

counter maneuvers. Now when you have Shy-Drager syndrome it is

difficult to stand up and cross your legs. That's where sitting down

on a stool and then crossing your legs does make life a lot easier in

that way. Another study that was done by the same man, Dr. ,

combine those maneuvers with compression of different body

compartments whether it was your calves or your abdomen. He felt that

a very simple effective way in certain patients, is to have a corset

that you can wear and that compresses one important compartment. Now

with many patients you actually manage quite well a lot of the time

but there are sometimes, it might be a few days or a week or so, when

your blood pressure control is narrower. When you have all those

things you can do for your blood pressure, all these weapons, all

those things you can do to maintain your blood pressure better and you

understand them, you can use them more effectively.

Q: Night is the worst time when my husband has to get up and go to the

bathroom. It is the most dangerous part of the house and usually

where he blacks out and falls. Is there anyway of taking this

medication overnight inorder to maintain a normal level or almost

normal level of blood pressure during the night?

A: (Dr. on) Well that is a very tough question. I guess we are

all very conservative about giving medicine at night to raise the

blood pressure. Half of the patients with multiple system atrophy or

Shy-Drager will have high blood pressure already while lying down. If

you happen not to have high blood pressure when you lying down then

there might be a little latitude to take a little medication if your

physician thinks it is OK. But I would think that if your lying down

blood pressure is above average to begin with I would be very

reluctant to take a medicine during the night.

(Dr. Chokroverty) I might add a little bit to that. If your husband

isn't opposed to using a urinal and some people can urinate while

lying down, others need to sit up, but that's better than standing in

the bathroom. And the other thing is, that if you can't do that, to

attach a condom at night and use drainage. It is not ideal for

everyone but it can work for some patients, so you can avoid getting

up and going to the bathroom which I agree is a dangerous place.

(Dr. Low) One further bit of advice, I routinely tell my patients to

raise the head of the bed by four inches. That does several things,

one is with your condition you lose the normal variation, with a

normal subject the blood pressure falls substantially at night; with

Shy-Drager syndrome it stays up. Now the second thing is, when you

raise the head of the bed, one effect is that it significantly reduces

the amount of urine that is formed over night so that the need to go

to the bathroom goes down significantly.

(Dr. Coghlan) We agree very much with what Dr. Low just said. Many of

our patients when we tell them to elevate the head of the bed, they

say it is very uncomfortable and that they start to slide and they

don't sleep as well. So, because of that, we try a lot of simple

tricks that have helped us a great deal. We have taught our patients

to sleep with one of those eggshell mattresses of foam in such a way

that they create an elevated plane to support their body from the

waist up. You can fold it and adhere it using duck tape and depending

on how much you want to raise it, you can even wrap it around a pillow

and as you lye on that irregular surface, which by the way is very

comfortable. You do not slide with this under the sheet and patients

have much success with this to elevate the head of the bed.

(Caregiver) I just want to say that I agree with what the doctors are

saying. In my wife's case we raised the head of the bed and it did

reduce the urine output to the extent that she did not have the urge

to go. I think you will find that it makes a fantastic difference.

What happens as the doctors have said, is that the blood pressure

drops at night because of the elevated head, urine output decreases

greatly and just plain comfort for both partners, increases a lot.

The bed raising made just a huge amount of difference.