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Hi, because my bp was going up a few days ago they stopped

my florinef and gatorade - now it is down to 77/ 59 upon waking

but my pulse is 135. I feel worse when feel the fluctuation. Like

at midnight last night i got horrible chills and was nauseated

and it shot up high for about half an hour - 134/ 97. Usually it is

the diastolic that shoots up for me as was the case the other

day - 110/105. My pulse is always sky high when standing but

can go down to the 90's when lying down.

I am afraid beta blockers will make this all worse - and that

seems to be the only option. Then just take florinef as needed

(midodrine makes me feel awful).

just feel exhausted, out of breath, and weak all of the time.

Waverley

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Waverly,

Have you tried raising the head of your bed to lower your reclining BP?

Position is usually the culprit in regulating BP with MSA. Se my note a few

minutes ago to Shirley.

You need to see a doctor about the pulse of 135 preferably a MSA or OH

specialist. Beta blockers are NOT for BP, they are for coronary artery

disease.

Take care, Bill Werre

-------------------------------------------------------------------

katihaiku wrote:

> Hi, because my bp was going up a few days ago they stopped

> my florinef and gatorade - now it is down to 77/ 59 upon waking

> but my pulse is 135. I feel worse when feel the fluctuation. Like

> at midnight last night i got horrible chills and was nauseated

> and it shot up high for about half an hour - 134/ 97. Usually it is

> the diastolic that shoots up for me as was the case the other

> day - 110/105. My pulse is always sky high when standing but

> can go down to the 90's when lying down.

>

> I am afraid beta blockers will make this all worse - and that

> seems to be the only option. Then just take florinef as needed

> (midodrine makes me feel awful).

>

> just feel exhausted, out of breath, and weak all of the time.

>

> Waverley

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

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My doctor told me my BP was too volatile for beta blockers,

sound like you are similar. I do drink coffee when my BP is low and

green tea when it shoots up (also help to take your mind of high BP by

doing something as lovely as having tea). Caffeinated drinks do

have a diuretic effect, but if you have problems with retention and

edema, that would certainly not be a problem. Pop has a lot of

caffeine (almost all flavours) and huge amounts of sodium and sugar, I'd

think that unsweetened coffee or tea is a far better idea. My heart

rate is much higher than it ever was before (and I am fit), but it is a

healthy heart, for me the anxiety it makes me feel is hard to deal with

(HR does not differentiate between being active and resting, steadily

between 80 and 110) and is entirely independent of what my BP is (that is

something I cannot understand - anyone?). It works much like being

in the gym all the time, I need more caloric intake than ever before to

break even - I lost a lot of weight when it first started, now I am

eating more to compensate.

At Friday 6/14/02 04:43 AM, you wrote:

Hi, because my bp was going

up a few days ago they stopped

my florinef and gatorade - now it is down to 77/ 59 upon waking

but my pulse is 135. I feel worse when feel the

fluctuation. Like

at midnight last night i got horrible chills and was nauseated

and it shot up high for about half an hour - 134/ 97. Usually it is

the diastolic that shoots up for me as was the case the other

day - 110/105. My pulse is always sky high when standing but

can go down to the 90's when lying down.

I am afraid beta blockers will make this all worse - and that

seems to be the only option. Then just take florinef as needed

(midodrine makes me feel awful).

just feel exhausted, out of breath, and weak all of the

time.

Waverley

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

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Waverly,

Orthostatic tachycardia (high heart rate upon standing)can be caused

from at least two things from the autonomic side of things: 1)over

responding to normal amounts of adrenaline (hyperadrenergic response)

and/or 2) the heart beating faster in order to keep blood from

pooling in your legs when your bloodpressure falls.

Having said that, Midodrine is much better at keeping blood from

pooling and tends to slow one's heartrate as an added benefit for

some. (I am sorry it makes you feel so bad. What side-effects do you

feel?) Florinef, though, helpful with orthostatic hypotension is not

usually as reliable at keeping bp up. (Of course, each patient has to

be treated individually, and some patients cannot take one of these

medications and sometimes neither.) Many patients, though, do benefit

from both.

As far as beta-blockers, Bill Werre has missed the mark here

slightly. Besides the usual uses for Beta-blockers, they also do a

good job with slowing a fast heartrate in patients with autonomic

dysfunction. Beta-blockers are very commonly prescribed to lower bp

(as you know). So, I understand any hesitancy in taking them in

relation to MSA. However, beta-blockers are used for the autonomic

side of things if a fast heartrate is a problem. Because, the

responses are so different with autonomic dysfunction vs. normal high

blood pressure, beta-blockers do not usually have as much of a bp

lowering response in cases such as ours. The object is to get your

heartrate down and your system as balanced as possible, and beta-

blockers ARE prescribed in conjunction with florinef and midodrine to

do just that. Of course, you may have to up the florinef a bit (or

the midodrine), but that is all part of the balancing act.

As for myself, I benefit greatly from this balancing act. I imagine

that others on the board do as well. The autonomic side of things

though somewhat the most treatable part of MSA is quite tricky. Many

doctors, at first blush, will think that a patient should not take

both a beta-blocker and florinef. However, that combination has been

around for quite some years now. The trick for me came when I

combined the beta-blocker with midodrine and then added back in the

florinef. (For a beta-blocker, I use Atenolol. Inderal made me feel

like a zombie, but I know it is used as well. Of course, the doctor

can discuss possibilities with you.)

I hope all of this helps. Many of the top autonomic specialists are

familiar with this regime. Also, bear in mind, that your bp reading

is of your arm, and it may not adequately predict what the blood

pressure in your brain is. So, midodrine patients feeling symptomatic

may have to keep their bp up a bit more than usual. To continue that

idea, if they do not feel as if they are having high blood pressure,

it is not always an issue to be overly concerned about. With

Florinef, the balance is not as easy though. Try to figure out though

if the feelings you are having could be due to the tachycardia side

of things (does your face get flushed when standing and at other

times?) or if in fact you are experiencing symptoms of high blood

pressure. I know all of it is hard to balance, but it gets somewhat

easier as you keep learning your body. Although, there will always be

times when everything is messed up regardless. Midodrine patients

know that it does not always help. These are all things you can

discuss with your doctor.

I am sorry you are having such difficulties. And I am, also, sorry

that midodrine is not working for you. Perhaps, you could share the

side-effects you were having with that medication.

I wish you the best.

Zachery

>

> > Hi, because my bp was going up a few days ago they stopped

> > my florinef and gatorade - now it is down to 77/ 59 upon waking

> > but my pulse is 135. I feel worse when feel the fluctuation.

Like

> > at midnight last night i got horrible chills and was nauseated

> > and it shot up high for about half an hour - 134/ 97. Usually it

is

> > the diastolic that shoots up for me as was the case the other

> > day - 110/105. My pulse is always sky high when standing but

> > can go down to the 90's when lying down.

> >

> > I am afraid beta blockers will make this all worse - and that

> > seems to be the only option. Then just take florinef as needed

> > (midodrine makes me feel awful).

> >

> > just feel exhausted, out of breath, and weak all of the time.

> >

> > Waverley

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

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Glad to see you back, Zak!

At Friday 6/14/02 05:16 PM, you wrote:

Waverly,

Orthostatic tachycardia (high heart rate upon standing)can be caused

from at least two things from the autonomic side of things: 1)over

responding to normal amounts of adrenaline (hyperadrenergic response)

and/or 2) the heart beating faster in order to keep blood from

pooling in your legs when your bloodpressure falls.

Having said that, Midodrine is much better at keeping blood from

pooling and tends to slow one's heartrate as an added benefit for

some. (I am sorry it makes you feel so bad. What side-effects do you

feel?) Florinef, though, helpful with orthostatic hypotension is not

usually as reliable at keeping bp up. (Of course, each patient has to

be treated individually, and some patients cannot take one of these

medications and sometimes neither.) Many patients, though, do benefit

from both.

As far as beta-blockers, Bill Werre has missed the mark here

slightly. Besides the usual uses for Beta-blockers, they also do a

good job with slowing a fast heartrate in patients with autonomic

dysfunction. Beta-blockers are very commonly prescribed to lower bp

(as you know). So, I understand any hesitancy in taking them in

relation to MSA. However, beta-blockers are used for the autonomic

side of things if a fast heartrate is a problem. Because, the

responses are so different with autonomic dysfunction vs. normal high

blood pressure, beta-blockers do not usually have as much of a bp

lowering response in cases such as ours. The object is to get your

heartrate down and your system as balanced as possible, and beta-

blockers ARE prescribed in conjunction with florinef and midodrine to

do just that. Of course, you may have to up the florinef a bit (or

the midodrine), but that is all part of the balancing act.

As for myself, I benefit greatly from this balancing act. I imagine

that others on the board do as well. The autonomic side of things

though somewhat the most treatable part of MSA is quite tricky. Many

doctors, at first blush, will think that a patient should not take

both a beta-blocker and florinef. However, that combination has been

around for quite some years now. The trick for me came when I

combined the beta-blocker with midodrine and then added back in the

florinef. (For a beta-blocker, I use Atenolol. Inderal made me feel

like a zombie, but I know it is used as well. Of course, the doctor

can discuss possibilities with you.)

I hope all of this helps. Many of the top autonomic specialists are

familiar with this regime. Also, bear in mind, that your bp reading

is of your arm, and it may not adequately predict what the blood

pressure in your brain is. So, midodrine patients feeling symptomatic

may have to keep their bp up a bit more than usual. To continue that

idea, if they do not feel as if they are having high blood pressure,

it is not always an issue to be overly concerned about. With

Florinef, the balance is not as easy though. Try to figure out though

if the feelings you are having could be due to the tachycardia side

of things (does your face get flushed when standing and at other

times?) or if in fact you are experiencing symptoms of high blood

pressure. I know all of it is hard to balance, but it gets somewhat

easier as you keep learning your body. Although, there will always be

times when everything is messed up regardless. Midodrine patients

know that it does not always help. These are all things you can

discuss with your doctor.

I am sorry you are having such difficulties. And I am, also, sorry

that midodrine is not working for you. Perhaps, you could share the

side-effects you were having with that medication.

I wish you the best.

Zachery

>

> > Hi, because my bp was going up a few days ago they

stopped

> > my florinef and gatorade - now it is down to 77/ 59 upon

waking

> > but my pulse is 135. I feel worse when feel the

fluctuation.

Like

> > at midnight last night i got horrible chills and was

nauseated

> > and it shot up high for about half an hour - 134/ 97.

Usually it

is

> > the diastolic that shoots up for me as was the case the

other

> > day - 110/105. My pulse is always sky high when standing

but

> > can go down to the 90's when lying down.

> >

> > I am afraid beta blockers will make this all worse - and

that

> > seems to be the only option. Then just take florinef as

needed

> > (midodrine makes me feel awful).

> >

> > just feel exhausted, out of breath, and weak all of

the time.

> >

> > Waverley

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

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