Workup for POTS and/or Orthostatic Intolerance

[Guest guest]

Hi group,

I wanted to share my really extensive workup by a

Cardiologist/Electrophysiologist in Dallas Texas. Dr. Amer Suleman (pronounced

)at the Heartbeat Clinic.

http://www.theheartbeatclinic.com/

I went to him for my POTS/OI and got some autonomic testing I had been wanting

for a while. I finally have a prescription for a brain MRI to check for Chiari

Malformation.

the description of tests...

Metabolic Stress Test - Consisted of 3 breathing tests - 1. sitting and

breathing into a tube - slow and deep 2. sitting and breathing into a tube -

fast (as in hyperventilating) 3. on exercise bike, breathing into tube for a

number of minutes based on my age, weight and height. exertion level increases

as test progresses. This is where they tested me for VO2 Max which is used as

upper threshold for exercise to reduce post extertional malaise. I have been

wanting this test for 3 years (the VO2 max part).

Clinical Test of Sensory Integration of Balance (CSIB) -the Balance Test- done

in 4 parts - first on hard surface (eyes open then closed) then on foam (eyes

open then closed). Feet are placed in slightly pigeon-toed stance.

Videonystagmography (VNG) - for dizziness - see this site for info - I had the 4

parts that are mentioned here:

http://www.stopdizzi...ervices_vng.asp

Tilt c TCD/PCO2 - TCD - I think this is Transcranial Doppler - measures mean

blood flow velocity (mV) during head-upright tilt - testing of cerebral

autoregulation. I wore a headdband with an ultrasound piece on my temple. This

was connected to a laptop and I could hear the swishing sound of my HR.

Ansar - some sort of breathing test while supine. I have forgotten and asked

and forgot again.

PFO - Patent Foramen Ovale- With Transcranial Doppler setup, doc injected some

medication/saline/something into an IV and I took a deep breath, held it and

bore down. He did it twice and said I do not have a hole in my heart.

SA - asked and forgot the answer. sorry..

Echo - done supine as baseline then...

Stress Echo - after baseline echo and blood pressure readings, I walked slowly

on a treadmilll, increasing in effort until my heart rate was over 145 (which

didn't take long) then laying down quickly and tech taking more echo 'pics'.

They were surprised at how quickly my HR increased and decreased. Then more pics

while supine. This is in the midst of the tornado drama so it was started and

stopped but we got it done.

QSweat - electrodes, sweat collectors, some medication - on for some minutes

then off. did 4 places on my left side (forearm, 2 on leg and foot)

QST - This test was three parts. The first part was letting tech know if I could

feel the vibration from small box with a little clapper that rested on my big

toe. I was to hit a button for yes an a different button for no. Second part was

box with an air hole strapped to my foot. First it was cold air then hot and I

was to hit a button for yes if I could feel the air then no if I could not feel

it. The next part was pain using hot air from the second part but this time I

was to rate the heat based on scale of 1 to 5. The test stops when it is just

too hot to tolerate.

Hokanson - Tornado drama, power outage, etc - this is pushed off till tomorrow.

- Didn't get done today either. Staff was busy with rescheduled appts. Little

disappointed.

Gastric Emptying test - drank sip of OJ then small amount of OJ with radioactive

isotope. Machine was over my abdomen while the tech and I chatted. Did not do

the solid food part. Not sure why.

Holter - 24 hour

ABM - Automatic Blood pressure monitor. I am wearing a cuff that activates every

hour.

Loop - 30 days starting tomorrow when staff takes Holter/ABM off

EEG - Some baseline tests-then 1 hour EEG.

NCV - Nerve Conduction Test - not with needles like EMG which tests for

peripheral neuropathy. This was done with electrical current and checks for

autonomic neuropathy.

These are all done together - ultrasound tests.

Carotid

TCD - Transcranial Doppler of my neck

AAA - Abdominal Aortic Aneurysm

Segmental Pressures - Blood pressure measurements on my legs

The results:

My results:

1. Doc is still not convinced I have POTS. My TTT with him was normal.

(Unfortunately, I was wired and exhausted and could not fall asleep Monday night

so I took a Klonipin at around 3:30am. And the room the TTT was done was

freezing. I think these two things (plus perhaps excess adrenaline from the

trip) caused me to handle the TTT better. I was in agony and was in tears after

the test was over but I didn't have the POTS symptoms) Doc doesn't think the

klonipin would be enough to throw the TTT off. He thought perhaps he caught me

on a good day. He knows I have some form of orthostatic intolerance but doesn't

feel that it is necessarily POTS. He is going to do more testing once my biggest

issue is under control (which is not dysautonomia). He has prescribed midodrine

as a therapeutic trial. If I have 30% improvement, he will still not be

convinced it's POTS. If it is an 80% improvement, then he is happy to eat his

hat and agree that it is POTS. I have several things going on that it is

confusing the POTS issue. No Florinef or any other medications so we can

determine how the midodrine trial goes. Later, once we determine the form of

orthostatic intolerance, we will do bloodwork, discuss an exercise program and

biofeedback. Also add lifestyle changes, salt, water, florinef,, etc.

2. I have EDS and he wants me to see a geneticist at Baylor. Complete surprise!

3. I have gastroparesis. He doesn't want me to do anything about this yet as we

are doing a midodrine trial so no new meds for now. He does want me to google

gastroparesis diet and follow that.

4. The whopper: I flunked all of the balance tests. One of them, I flunked so

badly, you can't get any worse. He said I have the balance of a 90 year old

woman. This has nothing to do with dysautonomia. I am to see a

neuro-Otolaryngologist - a balance/vestibular specialist. Until then, to get a

jump start, I am to get an MRI of my brain to check for any possible causes and

also check for Chiari malformation. He wants me to go ahead and get started with

Vestibular Rehabilitation Therapy. This might be related to EDS but it's not

related to POTS.

5. Second whopper but not sure if this is related to number 4 or if it's related

to dysautonomia - The blood flow to my brain should be the same whether supine

or standing. My blood flow rate is 49 and this should be the same laying,

sitting, or standing. Within 2 minutes, it drops from 49 to 26 then in 30

minutes it drops to 20. Five minutes after being laid back, it climbed to 26. I

don't know how long it takes to get back to 49. I can't remember what we're

going to do about this - I will have to check my notes.

6. Autonomic tests - mildly abnormal.

All other tests were normal - no heart issues, no hole in my heart, no damaged

blood vessels, no carotid artery issues, no aortic artery issues. Functional

capacity (capacity to exercise) was normal.

Doc said everyone has been focused on POTS that no one has looked at my

dizziness problem. (I was a participant in a research study and the neurologist

did a quick evaluation and knew there was a problem and urged me to see a

neurologist when I got home. I have been under the care of a neurologist for the

past 3 years but she never picked up on any of this. I compensate well, I guess.

#4 answers the question why I never got better even though I did exercise.

#5 answers the question why I wake up and become alert when I lay down flat

(from sitting position) - when I lay down, my brain gets blood flow, therefore,

oxygen and glucose.

Hope this list is helpful to someone. I did list that I had ME/CFIS but was

there for my POTS. Normally, I would not list ME/CFIDS in order to get help but

thankfully, this doc is a diagnostician at heart and saw beyond that.

Marti

[Guest guest]

So .. What do you to about POTS?

On Apr 9, 2012, at 8:31 AM, marti_zavala wrote:

> Hi group,

> I wanted to share my really extensive workup by a Cardiologist/

> Electrophysiologist in Dallas Texas. Dr. Amer Suleman (pronounced

> )at the Heartbeat Clinic.

> http://www.theheartbeatclinic.com/

>

> I went to him for my POTS/OI and got some autonomic testing I had

> been wanting for a while. I finally have a prescription for a brain

> MRI to check for Chiari Malformation.

>

> the description of tests...

>

> Metabolic Stress Test - Consisted of 3 breathing tests - 1. sitting

> and breathing into a tube - slow and deep 2. sitting and breathing

> into a tube - fast (as in hyperventilating) 3. on exercise bike,

> breathing into tube for a number of minutes based on my age, weight

> and height. exertion level increases as test progresses. This is

> where they tested me for VO2 Max which is used as upper threshold

> for exercise to reduce post extertional malaise. I have been wanting

> this test for 3 years (the VO2 max part).

>

> Clinical Test of Sensory Integration of Balance (CSIB) -the Balance

> Test- done in 4 parts - first on hard surface (eyes open then

> closed) then on foam (eyes open then closed). Feet are placed in

> slightly pigeon-toed stance.

>

> Videonystagmography (VNG) - for dizziness - see this site for info -

> I had the 4 parts that are mentioned here:

> http://www.stopdizzi...ervices_vng.asp

>

> Tilt c TCD/PCO2 - TCD - I think this is Transcranial Doppler -

> measures mean blood flow velocity (mV) during head-upright tilt -

> testing of cerebral autoregulation. I wore a headdband with an

> ultrasound piece on my temple. This was connected to a laptop and I

> could hear the swishing sound of my HR.

>

> Ansar - some sort of breathing test while supine. I have forgotten

> and asked and forgot again.

>

> PFO - Patent Foramen Ovale- With Transcranial Doppler setup, doc

> injected some medication/saline/something into an IV and I took a

> deep breath, held it and bore down. He did it twice and said I do

> not have a hole in my heart.

>

> SA - asked and forgot the answer. sorry..

>

> Echo - done supine as baseline then...

> Stress Echo - after baseline echo and blood pressure readings, I

> walked slowly on a treadmilll, increasing in effort until my heart

> rate was over 145 (which didn't take long) then laying down quickly

> and tech taking more echo 'pics'. They were surprised at how quickly

> my HR increased and decreased. Then more pics while supine. This is

> in the midst of the tornado drama so it was started and stopped but

> we got it done.

>

> QSweat - electrodes, sweat collectors, some medication - on for some

> minutes then off. did 4 places on my left side (forearm, 2 on leg

> and foot)

>

> QST - This test was three parts. The first part was letting tech

> know if I could feel the vibration from small box with a little

> clapper that rested on my big toe. I was to hit a button for yes an

> a different button for no. Second part was box with an air hole

> strapped to my foot. First it was cold air then hot and I was to hit

> a button for yes if I could feel the air then no if I could not feel

> it. The next part was pain using hot air from the second part but

> this time I was to rate the heat based on scale of 1 to 5. The test

> stops when it is just too hot to tolerate.

>

> Hokanson - Tornado drama, power outage, etc - this is pushed off

> till tomorrow. - Didn't get done today either. Staff was busy with

> rescheduled appts. Little disappointed.

>

> Gastric Emptying test - drank sip of OJ then small amount of OJ with

> radioactive isotope. Machine was over my abdomen while the tech and

> I chatted. Did not do the solid food part. Not sure why.

>

> Holter - 24 hour

>

> ABM - Automatic Blood pressure monitor. I am wearing a cuff that

> activates every hour.

>

> Loop - 30 days starting tomorrow when staff takes Holter/ABM off

>

> EEG - Some baseline tests-then 1 hour EEG.

>

> NCV - Nerve Conduction Test - not with needles like EMG which tests

> for peripheral neuropathy. This was done with electrical current and

> checks for autonomic neuropathy.

>

> These are all done together - ultrasound tests.

> Carotid

> TCD - Transcranial Doppler of my neck

> AAA - Abdominal Aortic Aneurysm

> Segmental Pressures - Blood pressure measurements on my legs

>

> The results:

> My results:

> 1. Doc is still not convinced I have POTS. My TTT with him was

> normal. (Unfortunately, I was wired and exhausted and could not fall

> asleep Monday night so I took a Klonipin at around 3:30am. And the

> room the TTT was done was freezing. I think these two things (plus

> perhaps excess adrenaline from the trip) caused me to handle the TTT

> better. I was in agony and was in tears after the test was over but

> I didn't have the POTS symptoms) Doc doesn't think the klonipin

> would be enough to throw the TTT off. He thought perhaps he caught

> me on a good day. He knows I have some form of orthostatic

> intolerance but doesn't feel that it is necessarily POTS. He is

> going to do more testing once my biggest issue is under control

> (which is not dysautonomia). He has prescribed midodrine as a

> therapeutic trial. If I have 30% improvement, he will still not be

> convinced it's POTS. If it is an 80% improvement, then he is happy

> to eat his hat and agree that it is POTS. I have several things

> going on that it is confusing the POTS issue. No Florinef or any

> other medications so we can determine how the midodrine trial goes.

> Later, once we determine the form of orthostatic intolerance, we

> will do bloodwork, discuss an exercise program and biofeedback. Also

> add lifestyle changes, salt, water, florinef,, etc.

>

> 2. I have EDS and he wants me to see a geneticist at Baylor.

> Complete surprise!

>

> 3. I have gastroparesis. He doesn't want me to do anything about

> this yet as we are doing a midodrine trial so no new meds for now.

> He does want me to google gastroparesis diet and follow that.

>

> 4. The whopper: I flunked all of the balance tests. One of them, I

> flunked so badly, you can't get any worse. He said I have the

> balance of a 90 year old woman. This has nothing to do with

> dysautonomia. I am to see a neuro-Otolaryngologist - a balance/

> vestibular specialist. Until then, to get a jump start, I am to get

> an MRI of my brain to check for any possible causes and also check

> for Chiari malformation. He wants me to go ahead and get started

> with Vestibular Rehabilitation Therapy. This might be related to EDS

> but it's not related to POTS.

>

> 5. Second whopper but not sure if this is related to number 4 or if

> it's related to dysautonomia - The blood flow to my brain should be

> the same whether supine or standing. My blood flow rate is 49 and

> this should be the same laying, sitting, or standing. Within 2

> minutes, it drops from 49 to 26 then in 30 minutes it drops to 20.

> Five minutes after being laid back, it climbed to 26. I don't know

> how long it takes to get back to 49. I can't remember what we're

> going to do about this - I will have to check my notes.

>

> 6. Autonomic tests - mildly abnormal.

>

> All other tests were normal - no heart issues, no hole in my heart,

> no damaged blood vessels, no carotid artery issues, no aortic artery

> issues. Functional capacity (capacity to exercise) was normal.

>

> Doc said everyone has been focused on POTS that no one has looked at

> my dizziness problem. (I was a participant in a research study and

> the neurologist did a quick evaluation and knew there was a problem

> and urged me to see a neurologist when I got home. I have been under

> the care of a neurologist for the past 3 years but she never picked

> up on any of this. I compensate well, I guess.

>

> #4 answers the question why I never got better even though I did

> exercise.

> #5 answers the question why I wake up and become alert when I lay

> down flat (from sitting position) - when I lay down, my brain gets

> blood flow, therefore, oxygen and glucose.

>

> Hope this list is helpful to someone. I did list that I had ME/CFIS

> but was there for my POTS. Normally, I would not list ME/CFIDS in

> order to get help but thankfully, this doc is a diagnostician at

> heart and saw beyond that.

>

> Marti

>

>