POTS - Astronauts with low blood volume use rowing machines for treatment

[Guest guest]

Saw this article about how astronauts suffer from low blood volume after

spending time in space.  What I found interesting was that a doctor claimed

seated exercise, such as a rowing machine, was helpful. 

Anybody with POTS tried using a rowing machine?  Was it helpful?  Full article

here:

http://online.wsj.com/article/SB10001424052748704495004576265071239261318.html?m\

od=WSJ_hp_MIDDLENexttoWhatsNewsThird

[Guest guest]

Hi There,

Dr. Levine is a cardiologist who works with POTS patients and the NASA program.

He is located in Dallas Texas. You can be a member of the research study by

having your doctor contact his office. You do not have to travel to him to get

the program but you do have to have a doctor on board to monitor your progress,

you have to get off medication and you have to agree to follow the program

religiously as well as not share the program (as it is designed for you and

could be harmful to someone else). Also, you must increase salt and water.

Otherwise, it is a reasonable program.

Your doctor sends results of a 10 minute stand test (off salt and medication for

the testing) and this data is used to create your own 3 month program.

The program generally consists of seated exercise (swimming, recumbent bike,

rowing machine) a few times a week and light weight lifting the remaining days.

Usually the exercise is 3 minutes at the beginning with 1 minute warm up and 1

minute cool down. You try to keep your heart at a certain rate. There is a

pre-month 1 and 2 in the event you cannot begin at the first level. Near the end

of the 3 months, you being doing some exercise standing up. There are various

choices. You must continue to do these exercises after the 3 months as most

people tend to revert to their previous level of POTS.

Dr. Levin

http://www.utsouthwestern.edu/findfac/professional/0,,14262,00.html

Here is the link to his lab and the various studies:

http://www.ieemphd.org/subject%20ops.htm

how to get the program for yourself - send email to Van Gundy:

vangundy@...

There are various place to find out about this program.

I know it has been discussed on the dinet forum as well as Cort's forum

(aboutmecfs). Also, there is a facebook page for participants of the study "

http://www.facebook.com/topic.php?uid=2230099337 & topic=5984

My personal experience: I signed up for the study, went through all the

paperwork, doctors' visits but was unable to begin at the first level. So, I did

a month of physical therapy then started at the pre-month level (I have been

bed-bound for a while).

I was not successful but it is because I live alone and was unable to care for

myself and do the exercises. But, I now have some living aids - a rollator, a

scooter for errands away from home, a manual wheelchair that I foot propel

around the house and an electric wheelchair for the really bad days.

I plan on restarting the program very soon (this month).

I am not 100% certain that this program is right for ME/CFIDS patients due to

the mitochondrial defects and inefficient Kreb's cycle. BUT, I am willing to

give it a try. I know my limits and I know when I am heading for a crash so I

am confident that I cannot be harmed but I would caution you if you still

haven't got pacing down.

Marti

>

> Saw this article about how astronauts suffer from low blood volume after

spending time in space.  What I found interesting was that a doctor claimed

seated exercise, such as a rowing machine, was helpful. 

>

> Anybody with POTS tried using a rowing machine?  Was it helpful?  Full article

here:

>

>

http://online.wsj.com/article/SB10001424052748704495004576265071239261318.html?m\

od=WSJ_hp_MIDDLENexttoWhatsNewsThird

>

>

[Guest guest]

Hmmm, I'm wondering if one of those Chi machines---were one puts their ankles in

slots, and machine shakes legs is the same thing??

God Bless,

Sara

>

> Saw this article about how astronauts suffer from low blood volume after

spending time in space.  What I found interesting was that a doctor claimed

seated exercise, such as a rowing machine, was helpful. 

>

> Anybody with POTS tried using a rowing machine?  Was it helpful?  Full article

here:

>

>

http://online.wsj.com/article/SB10001424052748704495004576265071239261318.html?m\

od=WSJ_hp_MIDDLENexttoWhatsNewsThird

>

>

[Guest guest]

Marti:

Thanks for the great info.  The part about going off my regular meds is a bit

worrisome.  Please let us know how this works out for you.  One of my concerns

was that the astronauts were faced with a temporary root cause for their POTS,

while we have a more permanent cause.

Thanks again

Al

Hi There,

Dr. Levine is a cardiologist who works with POTS patients and the NASA program.

He is located in Dallas Texas. You can be a member of the research study by

having your doctor contact his office. You do not have to travel to him to get

the program but you do have to have a doctor on board to monitor your progress,

you have to get off medication and you have to agree to follow the program

religiously as well as not share the program (as it is designed for you and

could be harmful to someone else). Also, you must increase salt and water.

Otherwise, it is a reasonable program.

Your doctor sends results of a 10 minute stand test (off salt and medication for

the testing) and this data is used to create your own 3 month program.

The program generally consists of seated exercise (swimming, recumbent bike,

rowing machine) a few times a week and light weight lifting the remaining days.

Usually the exercise is 3 minutes at the beginning with 1 minute warm up and 1

minute cool down. You try to keep your heart at a certain rate. There is a

pre-month 1 and 2 in the event you cannot begin at the first level. Near the end

of the 3 months, you being doing some exercise standing up. There are various

choices. You must continue to do these exercises after the 3 months as most

people tend to revert to their previous level of POTS.

Dr. Levin

http://www.utsouthwestern.edu/findfac/professional/0,,14262,00.html

Here is the link to his lab and the various studies:

http://www.ieemphd.org/subject%20ops.htm

how to get the program for yourself - send email to Van Gundy:

vangundy@...

There are various place to find out about this program.

I know it has been discussed on the dinet forum as well as Cort's forum

(aboutmecfs). Also, there is a facebook page for participants of the study "

http://www.facebook.com/topic.php?uid=2230099337 & topic=5984

My personal experience: I signed up for the study, went through all the

paperwork, doctors' visits but was unable to begin at the first level. So, I did

a month of physical therapy then started at the pre-month level (I have been

bed-bound for a while).

I was not successful but it is because I live alone and was unable to care for

myself and do the exercises. But, I now have some living aids - a rollator, a

scooter for errands away from home, a manual wheelchair that I foot propel

around the house and an electric wheelchair for the really bad days.

I plan on restarting the program very soon (this month).

I am not 100% certain that this program is right for ME/CFIDS patients due to

the mitochondrial defects and inefficient Kreb's cycle. BUT, I am willing to

give it a try. I know my limits and I know when I am heading for a crash so I

am confident that I cannot be harmed but I would caution you if you still

haven't got pacing down.

[Guest guest]

Hi there,

Sorry, should have been more specific.

You have to get off all meds that affect blood pressure -

For the testing: Florinef, salt, excess water, Mestinon, Midodrine, beta

blockers, even herbal supplements that can affect blood pressure.

For the exercise: only salt (up to 10,000mg unrefined sea salt) and water (3

liters per day). All other meds that affect blood pressure have to be stopped.

I stayed on my other meds like Valtrex, thyroid, LDN.

I am currently reading one of Dr. Grubb's books - " The Fainting Phenomemon " and

he lists the 4 grades (shortened):

Level 0 =Normal Orthostatic Tolerance

Level 1 =Symptoms are rare, can stand more than 15 min on most occasions.

Unrestricted activities to daily living.

Level 2 =Symptoms develop once a week, can stand more than 5 min on most

occasions. Some limitations to daily living.

Level 3 =Symptoms develop on most occasions, can stand more than 1 min on most

occasions. Some limitations to daily living.

Level 4 = Symptoms are consistently present, can stand for less than 1 minute on

most occasions. Seriously Disabled, bedridden or wheel-chair bound.

In regards to your comment about temporary vs. permanent cause: I feel

confident that this does not cure the illness but I do think it may be able to

provide an increase in functionality, so while the cause is permanent, the level

of severity is not permanent. When I first became ill, I was easily Grade 4.

Some time later, I was a level 2 for a number of years. A relapse took me back

to level 3 and lately, my inactivity has put me back at Grade 4. I think the

danger comes from enthusiastic Physical Therapists, Doctors, Neurologists,

Family members who think they are helping by pushing.

Forgot about the email address:

vangundy at texashealth dot org

or

THRIEEMPOTSRegistry at TexasHealt­h dot org

For SARA: The rowing machine is not the same as the device you mention (which I

used at my cousin's house and it was the worst thing for my back (spinal

stenosis). She is diabetic and she uses it to increase circulation since she is

sedentary. The rowing machine is actually very much like being in a boat.

Dr. Levine demonstrated this machine at NASA in December/January of 2010. I

think it is still the one he suggests: Concept 2 Model D Indoor Rower.

Backchannel me if you want the link. Too expensive for me!

I have thought of going down the street in a manual wheelchair set to hemi

height. The foot propulsion with occasional arm use would be a similar exercise

program.

HTH,

Marti

> Hi There,

>

> Dr. Levine is a cardiologist who works with POTS patients and the NASA

program. He is located in Dallas Texas. You can be a member of the research

study by having your doctor contact his office. You do not have to travel to

him to get the program but you do have to have a doctor on board to monitor your

progress, you have to get off medication and you have to agree to follow the

program religiously as well as not share the program (as it is designed for you

and could be harmful to someone else). Also, you must increase salt and water.

Otherwise, it is a reasonable program.

>

>

>

> Your doctor sends results of a 10 minute stand test (off salt and medication

for the testing) and this data is used to create your own 3 month program.

>

>

>

> The program generally consists of seated exercise (swimming, recumbent bike,

rowing machine) a few times a week and light weight lifting the remaining days.

Usually the exercise is 3 minutes at the beginning with 1 minute warm up and 1

minute cool down. You try to keep your heart at a certain rate. There is a

pre-month 1 and 2 in the event you cannot begin at the first level. Near the end

of the 3 months, you being doing some exercise standing up. There are various

choices. You must continue to do these exercises after the 3 months as most

people tend to revert to their previous level of POTS.

>

>

>

> Dr. Levin

>

> http://www.utsouthwestern.edu/findfac/professional/0,,14262,00.html

>

>

>

> Here is the link to his lab and the various studies:

>

> http://www.ieemphd.org/subject%20ops.htm

>

>

>

> how to get the program for yourself - send email to Van Gundy:

>

> vangundy@...

>

>

>

> There are various place to find out about this program.

>

> I know it has been discussed on the dinet forum as well as Cort's forum

(aboutmecfs). Also, there is a facebook page for participants of the study "

>

> http://www.facebook.com/topic.php?uid=2230099337 & topic=5984

>

>

>

> My personal experience: I signed up for the study, went through all the

paperwork, doctors' visits but was unable to begin at the first level. So, I did

a month of physical therapy then started at the pre-month level (I have been

bed-bound for a while).

>

>

>

> I was not successful but it is because I live alone and was unable to care for

myself and do the exercises. But, I now have some living aids - a rollator, a

scooter for errands away from home, a manual wheelchair that I foot propel

around the house and an electric wheelchair for the really bad days.

>

>

>

> I plan on restarting the program very soon (this month).

>

>

>

> I am not 100% certain that this program is right for ME/CFIDS patients due to

the mitochondrial defects and inefficient Kreb's cycle. BUT, I am willing to

give it a try. I know my limits and I know when I am heading for a crash so I

am confident that I cannot be harmed but I would caution you if you still

haven't got pacing down.

>

>

>

>