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

2. Have you ever been diagnosed with EDS or suspect that you may have it? - have not been diagnosed but have suspected 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? - no

5. Have you ever been informed by a doctor that you have low blood volume? - not yet

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? - yes

9. Is your skin pale? - yes

10. Please the top 6 worst symptoms that you experience with POTS: - fatigue/exhaustion, palpitations/tachycardia, pain everywhere, nausea/loss of appetite, pre-syncope, chest pain/shortness of breath

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

My doctor has told me that blood pooling in the abdomen and legs are common with POTS. I've definately had indications of blood pooling in my legs...color changes, itchy, ect.

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

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?

I've never been tested...but my POTS doc. believes this is a factor for me and most patients

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?

I've never really noticed! I know that when people touch my feet or hands they comment on them being cold but it's not something I personally notice.

8. Did your POTS arrive suddenly?

Yes and No. I've always had issues related to energy levels. For as long as I can remember I've always had trouble with high impact exercise as well. It never stopped me from living a normal life though. Then things suddenly got a LOT worse and hence the POTS dx. I definately had some sort of viral trigger...but I believe I've had an underlying issue since childhood.

9. Is your skin pale?

Yes...I'm Irish LOL

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

* Fatigue / heavy feeling / exaustion

* Little to No stamina for even mild activity

* Balance / motion issues (feel like I'm rocking/moving when I'm not)

* Coat hanger pain (neck and sholders) when upright

* Dazed feeling...I say it feels like I'm on autopilot

* Ocassionaly sleep issues...getting my body to relax even when I'm tired

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

The doctor has told me blood pools in lower part of body, abdomen and legs as he discussed POTS

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

no, although have been told by rheumatoid dr that have very mobile joints

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

occasional increased HR

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?

yes

9. Is your skin pale?

yes

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

heat intolerance & always cold

exercise intolerance

syncope

tachycardia

can't stand for more than 7 minutes

migraines

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

mainly in legs, but also seem to have it in hands and especially abdomen (own observations/QSART shows I have length-dependent neuropathy)

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

yes, I have EDS-III, in addition to the neuropathy

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

yes, I usually begin to feel unwell soon after waking (I suspect I may have some blood pooling supine, as well)

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?

some - periodic constipation, constant bloating, occasional cramping

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?

yep, my hands get really cold sometimes, when I'm symptomatic (surprised tech/my doctor, during ANS testing)

8. Did your POTS arrive suddenly?

I suspect I had mild symptoms for a long time, since late childhood or so, but it didn't really hit until 3 years ago - at that point, it hit very suddenly; I can pinpoint the exact day.

9. Is your skin pale?

not very

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

moderate to severe malaise whenever sitting or standing

feeling "drunk" when sitting or standing (feel intoxicated, unable to think, balance problems, incoherent/slurred speech)

heat intolerance

brain fog

exercise intolerance

lightheadedness

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

My legs and abdomen. When I sit down in chairs the proper way, my legs feel like they are balloons and they get a little red and my toes swell, so I assume that's blood. But I usually sit on my legs to prevent this. I'm always in weird positions when sitting (also because I'm flexible and certain positions are just more comfortable).

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

One doc diagnosed me with EDS, another disagreed and said I'm a borderline case that he wouldn't feel comfortable confirming because I don't have large veins and I don't have stretchy skin---I also barely pass the flexibility test.

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

Horrible tachycardia while laying in bed so yes.

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

Haven't been tested....and I don't think I know enough about it.

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

I haven't been tested for this I don't think, but because of my low BP and such, docs are always trying to increase my blood volume.

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

Horrible stomach and digestive symptoms all the time, 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 hands and feet do get cold very easily, but I don't think it's caused by vasoconstriction---I think the blood just flows right on out of them. My pulse pressure is quite low most of the time, so I'm not sure my heart is pumping enough blood usually. But yes, my veins are sometimes hard to see---they're very small. If I wasn't so pale, they'd be really hard to see.

8. Did your POTS arrive suddenly?

Well I've had symptoms since I was a kid, but I got worse very suddenly when I became deconditioned.

9. Is your skin pale?

Very

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

Nausea

Digestive issues

Dizziness/lightheadedness/black outs

Fatigue

Insomnia associated with the nightly crashes (tachycardia/chest pain + palpitations included, and the **** acid reflux)

Exercise intolerance and the way I feel after I try to ignore that I have this (low bp, feeling sick, cold sweats, tachycardia, shakey, full-on POTS crash symptoms)

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

Yes and abdomen too.

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?

not sure--sometimes I think I have a more hyperadrenergic response, but not always.

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

not formally tested. but florinef has really helped.

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

intermittent nausea and diarrhea

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?

chronically freezing hands that turn bluish

8. Did your POTS arrive suddenly?

mild dysmptoms perhaps before, but it felt sudden

9. Is your skin pale?

I guess

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

chest pain

woozy/presyncopal when upright too long

short of breath

headaches

feeling like all the fluid is being vaccummed out through my feet

bradycardia and pvcs/pacs, esp at night and premenstrually

awful exacerbations before my period

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

Yes, hands and feet most dramatically affected

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

Kind of, our geneticist suspects we have some unknown connective tissue disorder

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

Usually not, lying down is good for me. The exception woud be super low BP

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

Not sure--sometimes I think I have a more hyperadrenergic response, but not always.

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

Not formally tested. but florinef has really helped.

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

Oh yes, since my late 20's. My current symptoms are reflective of delayed 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?

My hands and feet are often dark blue/purple

8. Did your POTS arrive suddenly?

Mild lifelong symptoms that flared in my late 20's.

9. Is your skin pale?

I guess

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

Mine appears to be related to MCAD & a connective tissue disorder so....

-chronic hives

-flushing

-lightheadeness

-low BP

-fast HR

-chest pain

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

When I first got sick, I had very visible pooling in my arms and even moreso in my legs. Now I can see it rarely. But I think my answer to this question is 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 used to be a much slower starter. Now not so much. From what I have read, it is not uncommon for POTS patients to feel worst in the morning.

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

I don't think I have hyperandrenergic POTS, but I haven't looked into it.

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?

Just chronic reflux.

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 and feet are always cold, but I think this is due to poor circulation, not vasoconstriction, in my case.

8. Did your POTS arrive suddenly?

Yes.

9. Is your skin pale?

No

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

Fatique, exercise intolerance, dizziness

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Hi We cant keep up with the replies. My friend and i have started going through these - there are a few particular points we are aiming to validate - and there are obvious patterns already. THANKS HEAPS GUYS.

Oh and cold hands is what im looking for - whether you interpret it as bad circulation or vasoconstriction doesnt matter. its what we are looking for. cheers guys!!

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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? legs and stomach

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

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? 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? no vasodilate...but cold hands and particularlyfeet

8. Did your POTS arrive suddenly? yep

9. Is your skin pale? yep

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

tachy, syncope (when not on meds) dizzy,nausea, fatigue pain in ankles/feet

Thanks heaps for your contributions!!

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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? 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? 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? YES

9. Is your skin pale? YES

10. Please the top 6 worst symptoms that you experience with POTS: CHEST PAIN, NEAR SYNCOPE, LACK OF ENERGY, THRIST, HEADACHES,

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

Yes

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?

No

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

Yes with a hemodynamics blood volume test

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?

No but severe flares have

9. Is your skin pale?

Yes

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

Lightheadedness/off balance feeling

chest/neck pain & tightness

shortness of breath

exercise intolerance

fatigue

tachycardia

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

Yes.

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

No to both

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

Occasionally

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

Yes. Diagnosed

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 yes yes!

8. Did your POTS arrive suddenly?

No. I have been aware of the symptoms since I was 9 years old. before that, not really sure, but I have been told I was born with it - genetic. Other family also probably had it.

9. Is your skin pale?

Extremely pale. I've been told I look like bottle of milk.

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

Tachycardia and arrythmias

Insomnia

Fatigue

Overheating

Dizziness/Fainting

Inability to exercise for any reasonable period of time

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1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes I can watch my legs change colour.

2. Have you ever been diagnosed with EDS or suspect that you may have it? I have EDS type Hypermobility 6/9 on the scale.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?Tachycardia if I get woken up suddenly and I have to get out of bed gently to prevent dizziness

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?Never been tested

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?For sure and stress can bring that on real fast.

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 always cold in my hands and legs.

8. Did your POTS arrive suddenly?Yes after a dose of Glandular fever that never really disappaited.

9. Is your skin pale?Yes! Oh you look so pale you must be anemic lets order some blood test :)

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

Major fatigue

Unable to stand for longer than 15mins (with medication)

Heat/cold intollerance

Brain Fog

Excessive thirst/urination

Leg muscle pains

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

The pooling starts in my legs, but it goes all the way up to my waist. Blood also pools in my hands and arms.

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

Yes, I have hypermobility type EDS. While doctors agree that it probably exacerbates my POTS symptoms, they don't believe it can cause the severity of symptoms that I have.

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

Always.

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?

Suspected, but never tested.

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

No. I have gastroparesis and other digestive issues, but it is not 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.

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:

fatigue

brain fog

digestive issues

sleep disorders

temperature dysregulation

sensory overload

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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?

Yes.........legs and upper arms

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?

Yes, mornings are the worst

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

Dont Know

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

Yes. When They Take Blood For Any Reason, It is Sooooo Slow Coming Out

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?

Hands and Feet are cold when I dont feel well

8. Did your POTS arrive suddenly?

Yes, Out Of The Blue

9. Is your skin pale?

No, I Am Half Japanese

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

Blood Pooling

Chest Pain

Anxiety

Dizziness/Lightheadedness

Sleep Issues

Weight Gain

Thanks heaps for your contributions!!

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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, I suspect I do. Going to see a geneticist

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? Nausea and bloating

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

9. Is your skin pale? Yes

10. Please the top 6 worst symptoms that you experience with POTS: Fatigue, Body Pain, Brain Fog, Digestive Issues, Sensitive Sensory Issues, Exercise Intolerance

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

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? rarely, except if it's adrenaline surges, those happen in any position.

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Yes as I also get bp spikes with rushes and tachycardia, sweating, etc.

5. Have you ever been informed by a doctor that you have low blood volume? I have narrow pulse pressure when my symptoms are at their worst i.e., 98/80 compared to 99/60 when symptoms aren't as bad. This emight be same as low blood volume??

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

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? Legs feel tingly and achy when standing for more than a few minutes and my stomach starts to bloat.

8. Did your POTS arrive suddenly? Yes

9. Is your skin pale? Kind of

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

Sudden weakness spells that come out of no where when I've been standing in one spot

Adrenaline rushes

No tolerance to heat/cold as it seems my body won't regulate it's temp properly

Sensativities to many foods, preservatives, etc.

Low pressure systems during a storm makes me feel oxygen deprived (not short of breath)

When my hands and feet get cold they take forever to warm up and usually my right hand is colder than my left hand.

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

Yes, I believe and can see it too. My legs become reddish/purple when I am standing for too long. And it has been confirmed by my Endo.

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

No, and I do not thing that I have it.

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

Yes, could be caused by low blood pressure or if I had extra stress or excercised...

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

Do not know.

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

Yes. (but no specific test)

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

I have been dx with Microscopic Colitis.

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?

Cold hands.

8. Did your POTS arrive suddenly?

I?ve had syncopes since I was a child but POTS has been worsening gradually over the years.

9. Is your skin pale?

yes

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

Lightheadedness/off balance feeling

chest/neck pain & tightness

shortness of breath

Tachycardia & low BP

fatigue

tachycardia

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Guest brianala

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

No, a doctor has not told me this. I have not yet tried compression hose so I don't know if this is the case for me.

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

No, I have not been diagnosed but after reading symptoms I feel there is a possibility I have it. I have not been evaluated for it yet.

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

Yes, I have increased palpitations and tachycardia when I lay down at night, especially if I am laying on my left side. Also, I have problems with getting to sleep and waking up.

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

No, I'm not sure what this is.

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

Yes, after a positive tilt table test.

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

Sometimes.

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 constantly cold.

8. Did your POTS arrive suddenly?

I have not been diagnosed with POTS, but I have been diagnosed with neurocardiogenic syncope, mitral valve prolapse, orthostatic hypotension, low blood volume, and inappropriate sinus tachycardia. I have had these all my life, as far as I can tell but I was only diagnosed this past year.

9. Is your skin pale?

Yes

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

Again, no POTS for me but my worst 6 symptoms are:

- fatigue

- palpitations

- muscle/joint pain

- difficulty getting to sleep/waking up

- weakness/dizziness

- migraines

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

yes

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

dx with EDS, classical type

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

not nearly as much, but arrythmia is actually worse at night

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?

yes, but then I was dx (by IgG blood test) with food intolerances

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?

sorry, I don't really understand

8. Did your POTS arrive suddenly?

no, but it did recently get worse suddenly

9. Is your skin pale?

yes

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

3: difficulty showering

2: heat INTOLERANCE

1: debilitating fatigue/ exhaustion

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

YES

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?

YES, I SUFFER VASOVAGAL SYNCOPE ONLY AT NIGHT WHEN I AM SLEEPING.

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?

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?

YES

9. Is your skin pale?

YES

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

VASOVAGAL SYNCOPE

TACHYCARDIA

FATIGUE

DIZZYNESS

BRAIN FOG

HOT WEATHER INTOLERANCE

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