Re: - Tubs, POTS was:Re: Re: Jill Hand

[Guest guest]

Hi ,

I'm kind of confused. Is the Dexedrine the same stuff that people take for

dieting to suppress their appetite? Or is it that cough medicine? Sorry for the

dumb questions here. Does the doctor give it to her? Is that what helps her be

able to take the Mididrine?

It was interesting yesterday when I was unable to take my second Provigil ( I

didn't have it with me) and the symptoms suddenly hit me, I also noticed such

a huge increase in my orthostatic symptoms too!

In a message dated 4/10/2004 12:44:15 PM Eastern Daylight Time,

bfhalkett@... writes:

: Something that just occurred to me. My daughter had to take

very tiny doses of Dexedrine at first as could not tolerate more ...like

for a month or more before she could tolerate the larger dose that she

and we could see real results with. Thinking back it was almost as

though her tissues had to adjust to the effects of having

vasoconstriction. Taking tiny doses 3 or 4 times a day for a month or

more that seems to do nothing would take a lot of discipline and using

an alarm watch as a reminder. Bodies adjust slowly and often we expect

24 hr. results with meds. Trying just enough to avoid uncomfortable

crawlies.

I suggest this because I see the midodrine improves her endurance and

ability to enjoy doing simple tasks that she would normally have no

patience for due to fatigue.

Regards, Bernie

RE: Tubs, POTS was:Re: Re: Jill Hand

: My daughter tells me that the scalp crawling only lasts a short

time. It occurs particularly the first am midodrine dose she takes on

Sat. when she avoids the Dexedrine to allow her an improved appetite and

to actually be able to taste and enjoy food. She also get the crawly

scalp some with Dexedrine. It's got to be the vasoconstriction effect

of the drug. Meaghan is very supersensitive and it tells me just how

awful the low BP feels, for her to put up with the scalp crawlies.

Bernie, Toronto, CAN

[Guest guest]

: I'm sure you were confused. I see my message was unclear.

My daughter has ADD and is LD as well as the OI and POTS which is

controlled better now with meds. Her Dexedrine is the long acting - 8-

hrs., is a stimulant and is given to improve attention and focus (brain

fog) on school days so she has better attention and can function. She

is unable to take Dexedrine in the evening as it causes sleeplessness

and for her absolutely kills the appetite. Can't eat lunch at school.

Dexedrine is also a vasoconstrictor and improves her OI and Blood

Pressure considerably during the school day. The midodrine (Amatine in

Canada) is great because it does not cross the blood brain barrier and

does not cause the sleeplessness and does not kill the appetite. In

fact, Meaghan seems so much better on the midodrine in the evening that

she is eating rather better at dinner and she has more energy during the

evening because her B. P. is higher. She finds the Dexedrine better

than midodrine for improving focus during the school day and it comes in

the long acting form which midodrine does not. Midodrine also more

expensive. A developmental paediatrician has always treated Meaghan's

ADHD and when I gave her DR. Grubbs note containing the suggestion of

using Midodrine, she ordered it. Additionally, Dexedrine can be a

rather harsh drug and my dtr. would experience a very uncomfortable down

and increase in orthostatic symptoms, fatigue etc when the Dexedrine was

wearing off. Now , wwhe can take the midodrine 30 min before Dex wears

off and doesn't have to experience the irritability and feel the energy

draining away.

I believe Dexedrine was was used in the late 60's as a wt. loss drug for

women mostly I believe, but many found it caused a lot of anxiety and is

not " recommended " I believe, though perhaps some do. It severely

affects my daughter's appetite so much that we cannot give it on

weekends or she would be eating nothing. We have been using the

midodrine to combat OI and POTS on weekends and it is working great

except we have difficulty remembering to give it every four hours as she

will forget until she is feeling wacked out again. Not all ADD folks

experience the severe appetite suppression that my dtr. gets.

Provigil is a stimulant also I believe? When do you take it and has it

helped a lot or do you get side effects? I wonder what the criteria are

for prescribing one over the other....cost perhaps? Do you also take

Florinef twice a day....or did it not work for you. It very much

reduced the severity of lightheadedness for my daughter.

Am I correct in remembering that you have HEDS plus Marfan features as

my dtr. does. How old are you? Were you symptomatic in childhood and

adolescence and did you have a fine motor delay i.e. great difficulty

with writing. I realize this supposed " fine motor delay " of my dtrs.

was actually the hypermobile joints preventing her from being able to

print. Her hand becomes painful now after writing 2-3 sentences and she

has never been able to do cursive writing. Also she has severe

hyperaccusis (sensitivity to loud noises) that has improved

substantially as her POTS has been better controlled. Her temperament

is much more even now that the OI symptoms are better controlled though

she still has lots of hand and feet mottling by times.

It is interesting to compare effects of these meds and see symptom

changes in other areas. Regards,

Bernie

Re: - Tubs, POTS was:Re: Re: Jill Hand

Hi ,

I'm kind of confused. Is the Dexedrine the same stuff that people take

for

dieting to suppress their appetite? Or is it that cough medicine? Sorry

for the

dumb questions here. Does the doctor give it to her? Is that what helps

her be

able to take the Mididrine?

It was interesting yesterday when I was unable to take my second

Provigil ( I

didn't have it with me) and the symptoms suddenly hit me, I also noticed

such

a huge increase in my orthostatic symptoms too!

[Guest guest]

: I'm sure you were confused. I see my message was unclear.

My daughter has ADD and is LD as well as the OI and POTS which is

controlled better now with meds. Her Dexedrine is the long acting - 8-

hrs., is a stimulant and is given to improve attention and focus (brain

fog) on school days so she has better attention and can function. She

is unable to take Dexedrine in the evening as it causes sleeplessness

and for her absolutely kills the appetite. Can't eat lunch at school.

Dexedrine is also a vasoconstrictor and improves her OI and Blood

Pressure considerably during the school day. The midodrine (Amatine in

Canada) is great because it does not cross the blood brain barrier and

does not cause the sleeplessness and does not kill the appetite. In

fact, Meaghan seems so much better on the midodrine in the evening that

she is eating rather better at dinner and she has more energy during the

evening because her B. P. is higher. She finds the Dexedrine better

than midodrine for improving focus during the school day and it comes in

the long acting form which midodrine does not. Midodrine also more

expensive. A developmental paediatrician has always treated Meaghan's

ADHD and when I gave her DR. Grubbs note containing the suggestion of

using Midodrine, she ordered it. Additionally, Dexedrine can be a

rather harsh drug and my dtr. would experience a very uncomfortable down

and increase in orthostatic symptoms, fatigue etc when the Dexedrine was

wearing off. Now , wwhe can take the midodrine 30 min before Dex wears

off and doesn't have to experience the irritability and feel the energy

draining away.

I believe Dexedrine was was used in the late 60's as a wt. loss drug for

women mostly I believe, but many found it caused a lot of anxiety and is

not " recommended " I believe, though perhaps some do. It severely

affects my daughter's appetite so much that we cannot give it on

weekends or she would be eating nothing. We have been using the

midodrine to combat OI and POTS on weekends and it is working great

except we have difficulty remembering to give it every four hours as she

will forget until she is feeling wacked out again. Not all ADD folks

experience the severe appetite suppression that my dtr. gets.

Provigil is a stimulant also I believe? When do you take it and has it

helped a lot or do you get side effects? I wonder what the criteria are

for prescribing one over the other....cost perhaps? Do you also take

Florinef twice a day....or did it not work for you. It very much

reduced the severity of lightheadedness for my daughter.

Am I correct in remembering that you have HEDS plus Marfan features as

my dtr. does. How old are you? Were you symptomatic in childhood and

adolescence and did you have a fine motor delay i.e. great difficulty

with writing. I realize this supposed " fine motor delay " of my dtrs.

was actually the hypermobile joints preventing her from being able to

print. Her hand becomes painful now after writing 2-3 sentences and she

has never been able to do cursive writing. Also she has severe

hyperaccusis (sensitivity to loud noises) that has improved

substantially as her POTS has been better controlled. Her temperament

is much more even now that the OI symptoms are better controlled though

she still has lots of hand and feet mottling by times.

It is interesting to compare effects of these meds and see symptom

changes in other areas. Regards,

Bernie

Re: - Tubs, POTS was:Re: Re: Jill Hand

Hi ,

I'm kind of confused. Is the Dexedrine the same stuff that people take

for

dieting to suppress their appetite? Or is it that cough medicine? Sorry

for the

dumb questions here. Does the doctor give it to her? Is that what helps

her be

able to take the Mididrine?

It was interesting yesterday when I was unable to take my second

Provigil ( I

didn't have it with me) and the symptoms suddenly hit me, I also noticed

such

a huge increase in my orthostatic symptoms too!

[Guest guest]

: I'm sure you were confused. I see my message was unclear.

My daughter has ADD and is LD as well as the OI and POTS which is

controlled better now with meds. Her Dexedrine is the long acting - 8-

hrs., is a stimulant and is given to improve attention and focus (brain

fog) on school days so she has better attention and can function. She

is unable to take Dexedrine in the evening as it causes sleeplessness

and for her absolutely kills the appetite. Can't eat lunch at school.

Dexedrine is also a vasoconstrictor and improves her OI and Blood

Pressure considerably during the school day. The midodrine (Amatine in

Canada) is great because it does not cross the blood brain barrier and

does not cause the sleeplessness and does not kill the appetite. In

fact, Meaghan seems so much better on the midodrine in the evening that

she is eating rather better at dinner and she has more energy during the

evening because her B. P. is higher. She finds the Dexedrine better

than midodrine for improving focus during the school day and it comes in

the long acting form which midodrine does not. Midodrine also more

expensive. A developmental paediatrician has always treated Meaghan's

ADHD and when I gave her DR. Grubbs note containing the suggestion of

using Midodrine, she ordered it. Additionally, Dexedrine can be a

rather harsh drug and my dtr. would experience a very uncomfortable down

and increase in orthostatic symptoms, fatigue etc when the Dexedrine was

wearing off. Now , wwhe can take the midodrine 30 min before Dex wears

off and doesn't have to experience the irritability and feel the energy

draining away.

I believe Dexedrine was was used in the late 60's as a wt. loss drug for

women mostly I believe, but many found it caused a lot of anxiety and is

not " recommended " I believe, though perhaps some do. It severely

affects my daughter's appetite so much that we cannot give it on

weekends or she would be eating nothing. We have been using the

midodrine to combat OI and POTS on weekends and it is working great

except we have difficulty remembering to give it every four hours as she

will forget until she is feeling wacked out again. Not all ADD folks

experience the severe appetite suppression that my dtr. gets.

Provigil is a stimulant also I believe? When do you take it and has it

helped a lot or do you get side effects? I wonder what the criteria are

for prescribing one over the other....cost perhaps? Do you also take

Florinef twice a day....or did it not work for you. It very much

reduced the severity of lightheadedness for my daughter.

Am I correct in remembering that you have HEDS plus Marfan features as

my dtr. does. How old are you? Were you symptomatic in childhood and

adolescence and did you have a fine motor delay i.e. great difficulty

with writing. I realize this supposed " fine motor delay " of my dtrs.

was actually the hypermobile joints preventing her from being able to

print. Her hand becomes painful now after writing 2-3 sentences and she

has never been able to do cursive writing. Also she has severe

hyperaccusis (sensitivity to loud noises) that has improved

substantially as her POTS has been better controlled. Her temperament

is much more even now that the OI symptoms are better controlled though

she still has lots of hand and feet mottling by times.

It is interesting to compare effects of these meds and see symptom

changes in other areas. Regards,

Bernie

Re: - Tubs, POTS was:Re: Re: Jill Hand

Hi ,

I'm kind of confused. Is the Dexedrine the same stuff that people take

for

dieting to suppress their appetite? Or is it that cough medicine? Sorry

for the

dumb questions here. Does the doctor give it to her? Is that what helps

her be

able to take the Mididrine?

It was interesting yesterday when I was unable to take my second

Provigil ( I

didn't have it with me) and the symptoms suddenly hit me, I also noticed

such

a huge increase in my orthostatic symptoms too!