Ten Questions

[ramakentesh]

Ive been on the phone today talking to my friend who is a medical researcher in other fields about POTS. He has developed quite an interest in this area now that Ive gone downhill in the last six months. His field of expertise is indigenous health and diabetes II but he knows his stuff and is a pretty smart cookie.

He and I have been doing lots of research on the current medical opinions of the causes of POTS and we just wanted to see if these different opinions seems to pan out in terms of particular symptom profiles. To do this we thought we'd just ask you guys ten questions to get some anecdotle info or a Poll on some quick questions.

Dont be fooled into thinking that this in anyway some sort of proper medical test - as its just more an exercise in anecdotle information gathering. So I dont expect that anything gathered will provide us with anything concrete but it may just help my understanding of the condition a little.

Ill ask the questions now - if your a POTSIE like me please take the time to help out that would be great but I cant promise it will demonstrate anything useful.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

2. Have you ever been diagnosed with EDS or suspect that you may have it?

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

5. Have you ever been informed by a doctor that you have low blood volume?

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

8. Did your POTS arrive suddenly?

9. Is your skin pale?

10. Please the top 6 worst symptoms that you experience with POTS:

Thanks heaps for your contributions!!

[Nauthiz]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Not sure really

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

sometimes palpitations of shortness of breath

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

nope

5. Have you ever been informed by a doctor that you have low blood volume?

nope

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

yes, ibs, maybe gerd

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

not that i know of

8. Did your POTS arrive suddenly?

It seems to of come very suddenly, i may of had it very minorly before though

9. Is your skin pale?

very

10. Please the top 6 worst symptoms that you experience with POTS:

chest pain

palpitations

confusion

dizziness

extreme fatigue

difficulty gaining weight and exercising

[jump]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

My doctor seems to assume ALL people with POTS have blood pooling. I've never been tested for this. For the most part, I don't have symptoms of blood pooling (no blotchy skin, no swelling), EXCEPT if I stand for a very long time (more than 1/2 an hour) I start having severe neck/shoulder pain, headaches, and if I stand a very long time (an hour or more) I slowly start feeling like I'm at a high altitude, like I'm getting oxygen deprived. But on a day-to-day basis I don't think I have blood-pooling symptoms.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

No. When I lie down after being awake all day, I have uncomfortable heart palpitations. But when I wake up in the morning, before I actually try to move out of bed, I feel very normal. Once I sit up/stand up, I have symptoms, but the only time I have lying-down symptoms is after I've been up for a while. These lying-down palpitations are noticeably worse when I stop taking magnesium and B supplements.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

My doctor doesn't seem to be aware that there are multiple forms of POTS - however, I don't have the flushing or other symptoms that I've read about here, so I'd suspect I don't have this form.

5. Have you ever been informed by a doctor that you have low blood volume?

Not really, but I've never been tested for it. When I try to give blood, it takes FOREVER for the blood to be collected and I'm usually sick for days afterward - like completely incapacitated (since getting diagnosed with POTS I've stopped giving blood). My doctor has recommended I drink a lot and eat more salt, which I know is sometimes what they tell people to do if they have suspected low blood volume, but she never specifically told me she thinks I have that.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes, and for a few years I thought I had IBS. But then recently I was diagnosed with Celiac disease, and since following a GF diet I have hardly any symptoms at all. Once in a long while, if I'm having a bad POTS flare, I will have IBS-like symptoms if I try to stand up. But this hardly ever happens any more since eating gluten-free.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

YES. My hands and feet are almost always freezing cold, and often white or blue in color. Definitely much worse when I have to stand.

8. Did your POTS arrive suddenly?

No.

9. Is your skin pale?

No.

10. Please the top 6 worst symptoms that you experience with POTS:

Right now, in order of most peevish:

Chronic chest pain

Overwhelming fatigue

Excessive thirst and excessive urination

Easily get out of breath (exercise intolerance)

Insomnia

Tachycardia/feelings of pre-syncope upon standing

Before treatment, the tachycardia, bradycardia and uncomfortable heart palpitations were by far the worst symptom and kept me from doing a lot of things. With meds, the tachy, brady and palps are much more manageable, and most of the time I have no noticeable bradycardia or palpitations any more, just tachycardia, which is worse in the mornings.

[janiedelite]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

No, I was told I have it in my abdomen and my hands turn colors when they're lowered also.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

I'm pretty sure I don't have it.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Yes.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

The Mayo doc said I have mild hyperadrenergic POTS due to elevated norepinephrine and BP on standing.

5. Have you ever been informed by a doctor that you have low blood volume?

No

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes, I have slow small intestine emptying.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Yes, I've been diagnosed with chronic frostbite from the vasoconstriction.

8. Did your POTS arrive suddenly?

Not really.

9. Is your skin pale?

Yes.

10. Please the top 6 worst symptoms that you experience with POTS:

Fatigue, pain (chest, abdomen, arms, legs, head), burning skin pain from neuropathy, sleep disruption, brain fog, exercise/activity intolerance

[morgan617]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? No

2. Have you ever been diagnosed with EDS or suspect that you may have it? No, stiff as a board most days

3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? yes

5. Have you ever been informed by a doctor that you have low blood volume? yes, but the booger wouldn't document it because he said his peers would think he was crazy...grrrr

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? oh yes

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? all the time

8. Did your POTS arrive suddenly? no, don't ever remember not having it

9. Is your skin pale? except for rashy face

10. Please the top 6 worst symptoms that you experience with POTS: surges, fatigue, lightheadedness, visual disturbances, stomach problems, arrythmias

[ramakentesh]

thanks guys! Keep them coming!

[anna]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Myself and my 3 kids get fat red legs and elbows down.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

We all are diagnosed EDS3

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

We can be symptomatic while asleep!

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Possibly me and one of my kids have huge BP swings mine mainly high, but other 2 kids are wired most of the time!

5. Have you ever been informed by a doctor that you have low blood volume?

No but we all have big problems even after blood taken for tests.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

We all have GI problems.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

We all have cold hands and feet but 1 son also goes from cold to red hot if still for more than a couple of mins.

8. Did your POTS arrive suddenly?

No always there one symptom or an other!

9. Is your skin pale?

Mine is olive as is 1 of my kids but other 2 are white, even though my kids are all half chinese.

10. Please the top 6 worst symptoms that you experience with POTS:

Dizziness, disorientation, exercise intolarance, fatigue, migrains, needing to pee all the time!!!

[firewatcher]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

No, mostly abdomen and thighs.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No, I am very flexible but not truly hyper-mobile.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

No, only when upright.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Yes, my BP climbs with orthostasis.

5. Have you ever been informed by a doctor that you have low blood volume?

No, but I suspect it due to consistent narrow pulse pressure and high Hct and RBC.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

I have in the past, mostly constipation.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

YES, proved time and time again by embarrassed doctors and staff who cannot find a wrist pulse in me when standing!

8. Did your POTS arrive suddenly?

No, but the "big crash" did.

9. Is your skin pale?

Very, if I am not flushed (which is much of the time,) then I look like I have a constant sunburn.

10. Please the top 6 worst symptoms that you experience with POTS:

headache

tachycardia

dizziness/greyouts

Fatigue

tremor

eye/focusing problems/blurred vision

[bizbiz]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

No.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

I can wake up feeling very anxious (knot in stomach) and heart will race just by rolling over in bed and still have brain fog.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Never been diagnosed with it, but do suspect that that is the type I have.

5. Have you ever been informed by a doctor that you have low blood volume?

No.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

No.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

It doesnt matter whether I am sitting, standing or laying, my feet are ALWAYS cold. I would say my hands are cold about 60% of the time.

8. Did your POTS arrive suddenly?

I got POTS immediatley after I gave birth to my first child, but looking back now I realise I've had it for a lot longer, it just wasnt bad enough to disrupt my life.

9. Is your skin pale?

Not really...normal I guess.

10. Please the top 6 worst symptoms that you experience with POTS:

Brain fog

Chest tightness / throat tightness

Breathlessness

Fatigue

Head / Neck pain

Poor quality of sleep

[HoudiniCat]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? No.

2. Have you ever been diagnosed with EDS or suspect that you may have it? Never been dx?d but some joints are extremely flexible.

3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? No.

5. Have you ever been informed by a doctor that you have low blood volume? Yes.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? No.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? No.

8. Did your POTS arrive suddenly? Yes, I can tell you the exact date and time.

9. Is your skin pale? White as a ghost.

10. Please the top 6 worst symptoms that you experience with POTS:

dizziness

Brain fog

Weakness/heaviness in legs/arms

Fatigue

Visual disturbances

[Broken_Shell]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

No. I believe that mine may have more with shunting of blood to my digestive tract because eating and bowel activity really worsens my symptoms.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Sometimes, although laying down is the only thing that consistently makes my symptoms improve.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Not diagnosed, but based on my symptoms I believe that I may be hyperadrenergic.

5. Have you ever been informed by a doctor that you have low blood volume?

I have never been tested for it.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes. I had years of severe constipation which a year ago changed into an alternating pattern coupled with nausea and an increase in my other autonomic symptoms.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Yes.

8. Did your POTS arrive suddenly?

Somewhat. I developed symptoms following a viral illness seven years ago, and my symptoms have worsened and progressed since then.

9. Is your skin pale?

On days when I have increased symptoms I look more pale and unwell than other days.

10. Please the top 6 worst symptoms that you experience with POTS:

Wooziness & Disorientation

Intolerence to standing and walking

Hypoglycemia

Gastrointestinal disturbances (constipation, diarrhea, nausea)

Myofascial pain & fatigue

"Anxiety-like" surges and symptoms

[all4family]

Ive been on the phone today talking to my friend who is a medical researcher in other fields about POTS. He has developed quite an interest in this area now that Ive gone downhill in the last six months. His field of expertise is indigenous health and diabetes II but he knows his stuff and is a pretty smart cookie.

He and I have been doing lots of research on the current medical opinions of the causes of POTS and we just wanted to see if these different opinions seems to pan out in terms of particular symptom profiles. To do this we thought we'd just ask you guys ten questions to get some anecdotle info or a Poll on some quick questions.

Dont be fooled into thinking that this in anyway some sort of proper medical test - as its just more an exercise in anecdotle information gathering. So I dont expect that anything gathered will provide us with anything concrete but it may just help my understanding of the condition a little.

Ill ask the questions now - if your a POTSIE like me please take the time to help out that would be great but I cant promise it will demonstrate anything useful.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

My legs turn between red and purple when standing, but so does my abdomen, and chest.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

I worry I may have the vascular form.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Yes, they are different from the standing symptoms though.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

I suspect it, because I do have flushing, and during really bad episodes I have high blood pressure, but I also faint, and read somewhere that you don't do that with the hyperadrenergic form.

5. Have you ever been informed by a doctor that you have low blood volume?

No, but when I get my blood drawn the nurses line up to see who can "get" the vein. And I frequently have to get it drawn again because it comes out slow, and is thick and dark, and it hemolyzes (sp?). I don't know if that equals low blood volume, but it sure doesn't look right.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Some, yes.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

My veins do disapear, and I get cold hands and feet a lot.

8. Did your POTS arrive suddenly?

Yes, though I did have some symptoms my whole life, that may have been from POTS, they didn't change my life until I became sick overnight.

. Is your skin pale?

Yes.

10. Please the top 6 worst symptoms that you experience with POTS:

Gosh, there are so many to choose from! I'll go with:

fainting

shortness of breath with extreme muscle rigidity, and pain

constant chest pain and heavyness

foggy mind with headache, dizzyness, and visual disturbances

extreme pain with popping bones

fatigued to the point of being unable to wake me

Thanks heaps for your contributions!!

[potsgirl]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

No, I have pooling mainly in my abdomen.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Sometimes I have palpitations, shortness of breath

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

No

5. Have you ever been informed by a doctor that you have low blood volume?

That's something I still need to ask my doctor about...

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes, although it's mainly constipation

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Yes

8. Did your POTS arrive suddenly?

Yes, after a viral infection. It waxes and wanes, but I'm definitely not getting better.

9. Is your skin pale?

Scarily so, and my undereyes very dark

10. Please the top 6 worst symptoms that you experience with POTS:

Fainting

Headaches

Fatigue

Visual issues

Sensory Overload - can't stand loud noise, bright lights, too many people

Dizziness/Lightheadedness

[jjb]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

My hands almost as much as my legs

2. Have you ever been diagnosed with EDS or suspect that you may have it?

Yes, DXed at the NIH

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

YES!

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Yes.

5. Have you ever been informed by a doctor that you have low blood volume?

No

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes, IBS, gastroparesis and frequent N&V

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Yes

8. Did your POTS arrive suddenly?

No

9. Is your skin pale?

In general, we are on the pale side ... but flush easily

10. Please the top 6 worst symptoms that you experience with POTS:

I don't think of POTS the primary issue here, but dysfunction of the ANS in general.

My worse symptoms are the times I have complete white outs and cannot see and cannot hear due to orthostatic intolerance.

[casey311]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes, diagnosed venous pooling primary cause.

2. Have you ever been diagnosed with EDS or suspect that you may have it? Not diagnosed, not sure if I have it.

3. Do you experience symptoms when lying down even after a night of sleep in your bed? Not usually

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? No

5. Have you ever been informed by a doctor that you have low blood volume? No

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? I was diagnosed with IBS about 10 years ago

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? My feet and hands get very veiny and red.

8. Did your POTS arrive suddenly? Yes. Either post viral or pregnancy, they are not sure b/c I had a bad virus in my second trimester and went downhill from there.

9. Is your skin pale? No.

10. Please the top 6 worst symptoms that you experience with POTS: Dizzy/lightheaded, palpitations, venous pooling, heat tolerance, fatigue, sensory overload

[Lgamez3]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

My Dr hasnt told me much of anything yet, Im still new to this. I have noticed it mainly in my feet and ankles mostly and sometimes my knees for a while now not knowing it was blood pooling. I thought my ankles were bruising each night from all of the swelling.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

not sure what EDS is

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

yes I do

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

not sure what this is either. Im still reading up on all of this and there are so many different types of things it gets confusing. I only had my TTT and was diagnosed about 1 1/2 weeks ago although I have been dealing with it for 3 months now

5. Have you ever been informed by a doctor that you have low blood volume?

no

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

YES for many many years

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

no

8. Did your POTS arrive suddenly?

not sure- when I read back in journals I see that some symptoms were there years ago, but the near syncope and severe symptoms came on suddenly

9. Is your skin pale?

it can be at times

10. Please the top 6 worst symptoms that you experience with POTS:

dizziness

brain fog

headache/noise tolerance

fatigue/shortness of breath

shakiness/weakness

chest pain/heart pounding

[futurehope]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

A doctor pointed out to me when I was standing that my legs were bluer in color as were my hands.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Absolutely yes. I suspect low pulse pressure and the sick feelings that go with it.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

I do not experience symptoms as others do, but upon upright tilt after 5 minutes (the test only lasted 5 minutes), my norepinephrine went to 600+. I know others have had much worse than this, and my test lasted only 5 minutes. I do not know if this counts as "hyperadrenergic"?

5. Have you ever been informed by a doctor that you have low blood volume?

Yes. When viewing the results on blood volume testing, I'm in the range below normal, though not severely so.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes. This was the first indication (at 2 years old) that my body was not perfect. It is the symptom I've had the longest.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

My hands are cold most of the time as are my feet. I attribute this to lack of circulation?? I don't know if this is vaso-constriction?

8. Did your POTS arrive suddenly?

No. Once the symptoms became noticeable, I realized that I had experienced weird episodes for years that would come and go, but eventually this just stayed and it never went away. I may feel better or worse, but the symptoms are here to stay. I suspect that I had episodes of dizziness in the past that would mysteriously go away. But what I have now has come on gradually. The jury is still out as to whether I am worsening or staying the same, though, when looking at my entire life, I would say I'm worsening.

9. Is your skin pale?

When I have narrow pulse pressure. I look like death when I get up in the morning or after a long day. I improve after moving around except if it's nighttime when I look sickly again.

10. Please lists the top 6 worst symptoms that you experience with POTS:

1 -feel sickly when sitting or standing vertically like somebody with no blood pressure

2 -exhaustion

3 -very cold hands

4 -pulse pressure narrowing and inability to think due to "lack of oxygen" to the brain (that's how it feels)

5 -waking up feeling like death no matter how long I've slept

6 -entire body going into a "crash" due to excessive outside activites or stress... a crash means any number of body systems malfunctioning, with exhaustion present in all cases

[Csmith3]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Yes (stomach as well, but legs worst).

2. Have you ever been diagnosed with EDS or suspect that you may have it?

Yes.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Yes.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Not diagnosed, but suspect I have this form very occasionally (say, 5% of all my POTS episodes).

5. Have you ever been informed by a doctor that you have low blood volume?

Yes.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Hmm, hands and feet notoriously cold, but blood tends to pool in them when I'm standing unless I'm on the verge of fainting.

8. Did your POTS arrive suddenly?

No.

9. Is your skin pale?

Yes.

10. Please lists the top 6 worst symptoms that you experience with POTS:

1 -general fatigue

2 - worse fatigue on standing/sitting

3 -GI issues

4 -greying out

5 -poor concentration

6 - "adrenaline surges"

[MomtoGiuliana]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Never been told I have blood pooling, but I suspect it is mainly in my legs.

2. Have you ever been diagnosed with EDS or suspect that you may have it? Suspect it is possible.

3. Do you experience symptoms when lying down even after a night of sleep in your bed? Rarely now. Yes when POTS was bad.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? suspect, yes. B/c of high blood pressure and excessive feelings of anxiety at times.

5. Have you ever been informed by a doctor that you have low blood volume? Was suspected. Never measured.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

no.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? no

8. Did your POTS arrive suddenly? fairly. Symptoms became worse over period of weeks.

9. Is your skin pale? occasionally.

10. Please the top 6 worst symptoms that you experience with POTS: tachycardia, palpitations (benign irregularities), episodes of feeling dizzy/faint (never passed out since my early 20's), adrenaline rushes, weakness/tiredness, feeling of heaviness in chest

[EarthMother]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Never have been told, don't really expect that at this time. Years ago I could see a difference with support stockings. Now even the really high ones don't seem to make a dent in my POTS.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

I don't have any symptoms of EDS

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Rarely I will experience a surge when I first go to turn in for bed. Something about my sympathetic system not wanting to hand over to my parasympathetic system I suppose. And I'll end up surging for 15 - 20 minutes. I then sleep well. Have all my life. What does happen more often, if that I'll wake up in the morning in a surge that started during a vivid dream state. Waking up is the rough one. That first roll over of the morning can be a time bomb.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

I never had any of the formal tests for hyperadrenergic, but my cardio used that term last fall when I was in my first bad crash that started last spring. (I'm in my second bad crash, that seems to have sprung up at the same timing this spring.)

5. Have you ever been informed by a doctor that you have low blood volume?

No specific tests for blood volume. Use to take florinef years ago. Did salt loading for years after. Did (and loved) DDAVP as needed for a number of years, until some endo I didn't know took me off of it and my PCP didn't want to start me back up on it again.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

I had really bad IBS about 20 years ago. It lasted about 10 years, then went away. I don't tend to have those issues any more. But I certainly still flair badly after eating ... just can't say its IBS.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

I haven't noticed this.

8. Did your POTS arrive suddenly?

My crashes seem sudden and unbidden. But I've had notes in my charts since I was 20 years old that said things like "tachycardia on mild exharsion. (ok, they probably spelled it correctly though! LOL)

9. Is your skin pale?

Not particularly. Blotchy, yes. Red nose often. Uneven skin tone. Yep. Not often pale.

10. Please the top 6 worst symptoms that you experience with POTS:

• Surges of adrenaline
  
• Inability to stand for more than 1-2 minutes
  
• Heart Palpitations
  
• Anxiety / Panic
  
• Temperature intolerance
  
• Post pranial weakness and flairs
  

[MightyMouse]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

No

2. Have you ever been diagnosed with EDS or suspect that you may have it?

Yes

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Sometimes

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

yes

5. Have you ever been informed by a doctor that you have low blood volume?

yes, dx'd by nuclear medicine testing

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes, dx'd with very slow gi motility

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

No

8. Did your POTS arrive suddenly?

No

9. Is your skin pale?

Yes

10. Please the top 6 worst symptoms that you experience with POTS:

Pain (muscular)

Exhaustion

Heat intolerance

Nausea

Dizziness/near syncope

Exercise intolerance

[summer]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

No

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No diagnosis, I do have quite a few characteristics

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

No

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Yes

5. Have you ever been informed by a doctor that you have low blood volume?

No

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Yes+++

8. Did your POTS arrive suddenly?

Had mild POTS for years but dramatically worsened after a viral infection

9. Is your skin pale?

Yes

10. Please the top 6 worst symptoms that you experience with POTS:

Brain fog

Fatigue

Muscle and joint pain

Migraines

Heat and cold intolerance

Visual symptoms (ie. blurring, floaters)

[cmtaylor5]

I'm going to answer twice. Once for me, and once for my son.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Yes. I've gained a lot of weight since I've been diagnosed, so it seems more like swelling rather than my legs turning purple.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

Yes.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Yes. Especially before I was medicated.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Not diagnosed, but I suspect it.

5. Have you ever been informed by a doctor that you have low blood volume?

My neurologist assumed it. I have not had testing.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes. I have had IBS for 20 years. It has gotten more pronounced since my POTS diagnosis.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Yes. Extremely cold hands and feet at times.

8. Did your POTS arrive suddenly?

I think I had mild symptoms for years. They became more pronounced following the birth of my last child. It took several years before they were completely interfering with my daily life.

9. Is your skin pale?

Yes. I come from a dark skinned Italian family. I am the only one who is pale. I was not pale as a child.

10. Please the top 6 worst symptoms that you experience with POTS:

Tachycardia

PAC's

Chest Pain

Shortness of Breath

Fatigue

Heat and Exercise intolerance

*I live an almost completely normal life since being medicated with low dose Beta Blockers 4 years ago.

My son's answers:

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Extremely severe pooling in legs. Slightly less in hands.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

Yes. Diagnosed by a geneticist at Vanderbilt.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

Yes.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

Not diagnosed or tested, but suspected.

5. Have you ever been informed by a doctor that you have low blood volume?

My doctor assumes I have low blood volume and I have been treated for it, but not tested.

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Yes. IBS and intense stomach pain related to blood pooling.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

Yes. Extremely cold hands, arms, and feet when standing in place for only short periods. Very painful legs as well.

8. Did your POTS arrive suddenly?

Over a period of a few months. Symptoms came and went but were severe when present.

9. Is your skin pale?

Used to be olive complected, but now pale.

10. Please the top 6 worst symptoms that you experience with POTS:

Very large increase in heart rate upon standing.

Chest Pain and pressure

Fatigue

Heat Intolerance

Severe stomach cramping due to blood pooling most mornings

Greying out upon standing/brain fog accompanies this

[ana_22]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

yes i can see it and cardio has said that there is pooling

2. Have you ever been diagnosed with EDS or suspect that you may have it?

never been diagnosed with it, not flexible / stretchy. but who knows?

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

yes

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

have not been diagnosed with it, havnt asked my cardio about it. i rarely have high bp so i think i dont have this form.

5. Have you ever been informed by a doctor that you have low blood volume?

no, i dont think we can test this is australia?

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

i have a lot of gastric symptoms. some drs have suggested IBS.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

no. i have cold hands but usually visible veins.

8. Did your POTS arrive suddenly?

kind of. was feeling not quite right for couple of months but could still work/function/socialise/eat/walk/ just thought i was a bit stressed from work, didnt have cardiac symptoms. became disabling suddenly 3.00pm on a day in Mach 2008.

9. Is your skin pale?

very

10. Please the top 6 worst symptoms that you experience with POTS:

constant light head dizzy feeling

no appetite

nausea

sensitive ears (to noise)

cant walk long disances (more than 100 or so mertres)

weakness

[Heiferly]

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

Yes, I can notice the change in color when they fill with blood, but usually I avoid standing very long these days anyway because I can't tolerate it.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

No, I'm fairly sure I don't.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

I'm usually in good shape lying down. Occasionally if my BP & HR are running very low, I will be feeling weak/run-down/nauseated/lightheaded regardless of position, but I don't have this problem much now that I'm under better control with medications.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

I have flushing, but I don't think I generally fit the bill for Hyperadrenergic POTS. I haven't had catecholemines tested or anything, though.

5. Have you ever been informed by a doctor that you have low blood volume?

No. I am on fludrocortisone 2x daily, with accompanying salt/fluid loading ... which may imply they are treating for hypovolemia? But I think they are most likely following the "drugs usually tossed at POTS" protocol, rather than any particular knowledge of what MY body is doing. (Sigh. I suppose this shows my slipping faith in my docs.)

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

Had endoscopy/colonoscopy/upper-GI series years ago; diagnosed with GERD, IBS, some spasms in the small intestine. This was all years before onset of POTS. Was able to cope without medication for a number of years, but POTS made it worse, so now frequently need medication to manage it.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

No. My hands are quite frequently icy cold even when the rest of me is warm, but it doesn't seem to be vasoconstriction and it's been that way as long as I can remember, predating POTS.

8. Did your POTS arrive suddenly?

I know the exact date that it started. I felt perfectly fine the day before that. VERY sudden.

9. Is your skin pale? Always has been; people often joke if it were any paler I'd be see-through. I don't really sit out in the sun much though.

10. Please the top 6 worst symptoms that you experience with POTS:

-excessive sleepiness and fatigue (confounding variable: narcolepsy in addition to POTS)

-orthostatic intolerance (tachycardia, lightheadedness, nausea upon standing still or sometimes even sitting upright for long periods)

-syncope, sometimes w/ convulsions

-brain fog & memory problems (confounding variable: head injury secondary to a syncope caused problems with area of brain for short term memory/auditory memory)

-skin pain (prickly burning)

-GI issues