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I'm Hoping Everyone Will Participate With This :)


IDreamInColor

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I'm hoping all of you will participate in sharing your symptoms list. I am very curious on how many of the same symptoms we share, as well as the less common ones that are unique to us.

Please list every symptom, even the small ones that you experience frequently.

Here is my list in no particular order...

__Muscles drawing up, muscles won't relax

__Flushes that begin in upper back and run up thru head

__Diarrhea

__Constipation

__Headaches/Migraines

__Hand/Arm Tremors

__Legs Jerking Uncontrollably

__Loss of appetite

__Dehydration

__Heart Palpitations

__Extreme Weakness/Fatigue

__Weakness in arms and legs

__Anxiety attacks

__Depression

__Tinnitus

__Night Sweats

__Pressure in Temples

__Clammy Hands and Feet

__Sensitive to being touched

__Sensitive to smells

__Minimal urine output

__Increased urine output

__Chest Pains

__Shortness of Breath

__Eye auras

__Dizzyness/Vertigo

__Head feels funny

__Stabbing pains in ears

__Hearing tiny bubbles popping in my right ear

__Pressure in ears

__Muffled hearing upon standing up

__Always cold, hard time getting warm

__Nausea

__Eye Dizziness, this is where my eyes themselves feel dizzy

__Pinky and outter hand going numb

__Blurry Vision

__Unstable Temperature

__Intensified hearing, as if each noise "swells" hard to describe

__Abdomen Pain

__Inflammation in mouth, taste buds and gums

__Muscle atrophy

__Dilated Pupils

__Hard Time Waking up from Naps

I think that's all of them,lol...subject to change daily :)

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-heart races with standing, anxiety, exertion

-constant tingling hands feet sometimes trunk and face

-tinnitus

-Also have mast cell/allergy issues:anaphylaxis, flushing, swelling tongue/airway, trouble breathing, hives, itching

-temperature sensitivity esspecially heat

-sound sensitive

-tired

-need lots of sleep

-muscle twitches

-low grade fever

-night sweats

-constipation

-diarrhea

-lip blisters

-increasing number of allergies

-dermatographism

-facial flushing

-palpitations

-headache

-bradycardic when lying down

-low BP

I also have adrenal insufficiency so I don't know what symptoms are what but those are them!

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Just typed the whole lot out and my pc turned off for an update!!

Dizziness near/syncope (obviously!)

Tachy esp on standing

High and low BP swings

Narrow pulse pressures

Positional headaches that are excruciating (standing or sitting)

Pins and needles in legs,feet and scalp

Constant pins and needles in left hand and numbness of left foot

Weak arms and legs

Tinnitus - ringing, hissing, thumping

Hyperacusis (painful hearing)

Whooshing sound of pulse in back of head that drives me to insanity as it gets so loud

Muffled hearing (intermittent hearing loss with headaches)

Head pressure

Stiff neck and pain

Ehlers danlos - lots of joints pains/subluxes and easy tiring of muscles etc

Petechiae

Blood pooling in legs

Livedo reticulris

Flushing

Rashes and hives

Poor temp regulation

Constipation

IBS

Urinary urgency

Urinary excess esp at night

Adrenaline surges (like when you have to slam your car brakes on to narrowly miss a car!)

Vertigo

Spacey feeling - disequilibrium? where my eyes play catch up

No sense of smell then hypersensitive and smell things that make me feel nauseous

Cognitive issues - word recall, memory etc

Restless legs syndrome

Arm tremors. Hands tremor with movement

Nausea and vomiting

Good thread idea IDIC..... :)

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Severe fatigue

Pulling feeling in my neck like my neck can't support my neck

Dry eyes and dry mouth

Tachycardia

Churning feeling in chest

Weakness

Pain in neck, back and sacroiliac area

Nausea in am

Dizziness

Lack of appetite all day until evening

Feel extremely wobbly in am

Poor sleep- wake many times during the night

sometimes tight and and full feeling in chest

Adrenaline surges

Head pressure in back of head

Temperature disregulation

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I just woke up, so this is going to take some serious thinking =)

- syncope

- BP swings

- tachy (obviously!)

- arm and leg jerks

- twitching in muscles throughout the day

- allergies galore

- trouble keeping down food any time I eat

- severe headaches

- constant fatigue

- occasional numbness in hands

- random joint pains (that no one has any idea as to why)

- stuttering whenever I am talking and then stand up

- tinnitus (fluttering noises that other people can hear)

- heat intolerance: anything above 70 makes me feel like I'm in a sauna

- urinary fequency

- trouble staying hydrated

- blood pooling

- diarrhea/constipation

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Wow friends do you realize what we are all trying to cope with?

Look at these lists-all I can say is it's no wonder we are so incredibly stressed out.

While I was getting my IV iron today in the arm I had my IV I was having numbness, tingling, pain and it looked like my fingers were turning blue.

Part of me wanted to ask if those sensations were normal but for one thing there wasn't a nurse close at the time, for another I thought wow they are just going to thnk I'm really odd.

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My symptoms may not all be from Dysautonomia so keep that in mind too... I'm not exactly sure where Dysautonomia stops and other things start.

My main symptoms are:

Extreme Fatigue

Lightheadedness

Low BP

Severe IBS - constipation

Severe Acid Reflux or GERD depending on who you talk to

Low Body Temperature

Always feeling really cold (possibly the low temperature but idk)

Tingly Limbs

"Sleepy" Limbs (My limbs fall asleep really easily and stay asleep for long periods of time)

Balance Problems (especially in the shower...I'm thinking the heat maybe?)

Trouble Breathing

Anxiety (I don't like people getting close to me when I'm having bad days, it gives me these little anxiety attacks)

Brain Fog

Aches in my muscles (especially in my neck)

Depression and Isolation (I'd say these are my worst enemies some days...like today)

Double Vision

Lack of Motivation

Severe and multiple drug allergies

Cold Urticaria (allergy to cold)

flushing

exercise intolerance

gluten intolerance

possible dairy intolerance

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  • 4 months later...

Found this older post and I thought of bumping it up.

Here's a more or less complete list of my symptoms:

- tachycardia while laying down as well as standing

- palpitations that last from seconds, to minutes, to hours

- "wild" swings in BP and HR

- narrow pulse pressure upon standing

- low blood pressure mostly while standing

- headaches

- chest pain (from mild discomfort to excruciating, dull to sharp, lasting for seconds or hours/days)

- aching neck and shoulders

- aching muscles in my legs(while at rest) and sometimes in my arms

- muscle weakness

- occasional shakiness (mostly in my legs, particularly during an adrenaline surge)

- occasional joint pains

- pins and needles/itching/burning/crawling sensations all over my body (mainly in legs, hands, and scalp)

- adrenaline surges

- fatigue

- anxiety/panic attacks (or so I've been told - I'd say they are adrenaline surges)

- exercise intolerance (or should I say fear of exercising as I don't want to trigger an increase in bp or hr).

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Smart thread !

Thank you alex74alex for bumping it up!

You guys made it easy for me because I experianse most of your symptoms and plus!

Here are my bonus ones! (I am not sure if they are all from POTS).

1) Lack of test sensation in the mornings.

2) Difficulty swallowing esp round pills.

3) Lack of concentration to follow a meeting, reading a book, watching something...etc)

4) Dry and sensitive skin.

5) I don't remember my dreams, I only remember nightmares.

6) Dropping things.

7) Seeing flying tiny black objects in one eye.

8) My muscles get pulled, joints get dislocated very easily.

9) Medics can't find my veins easily.

10) (This one is very unusual) occasional strange feeling that I have lived an insident with all it's details before.

To be continued.....

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I have a b12 deficiency and MVP so some of these may overlap from that.

-dizziness/room spinning

- black out feeling when standing too fast

-headaches from mild to feeling like my brain is pulsing.

-shaky hands

- leg and other muscle twitches

- mood swings

- sensitivity to bright light and loud sound

- stuttering

- memory and word loss

- weight gain

- tachycardia

- severe chest pains

- needle sensation in my feet

- cold hands and feet

- low BP

- cold sensitivity

- blurred vision

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  • 2 weeks later...

Let's see - trying to grab the ones that are POTS-specific. In approximate order of frequency, with severity (1-3).

3 Spaciness while walking (failing to see cars, people, etc)

3 Extreme fatigue

3 Cognitive defects (words, brain fog, etc)

2 Pooling/discomfort/numbness in left hand (not really POTS, more POTS etiology)

3 Lightheaded while standing

2 Pupils doing funny things, blurry vision

3 Need at least 8 hours of sleep to function (can't push it any more, used to be able to)

3 Overstimulation on visual/auditory stimuli (crowds)

2 Hyperhidrosis (oversweating)

3 Overheat easily

1 Can only function in meetings if less than 45 minutes long

1-2 Nausea

1 Headaches

1 Palpitations

2 Shortness of breath

1 Presyncope

Only the cognitive defects and extreme fatigue predate the POTS developing (and are likely due to a combination of joint pain, bipolar, and psych meds).

I think that's it? But I hear cognitive defects make it hard for me to remember them all :^)

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I already know as soon as you POTsies read this post your head started spinning right away! lol :D Well what I did was went to the DINET symptoms list, copied, pasted, and tweaked accordingly. :rolleyes: The symptoms in bold are my most worst symptoms or just symptoms I deal with most. Side-notes are applied as well. Big Hugs!

  • Lightheadedness
  • Generalized weakness
  • Palpitations
  • Tremulousness
  • Shortness of breath (occasionally)
  • Chest discomfort and/or pain
  • Diagnosed with IBS-C (Chronic constipation) and I blame POTS.
  • Bloating
  • Nausea (occasionally but more often lately)
  • Abdominal pain
  • EXTREME Fatigue
  • Headache/migraine (chronic/daily)
  • Dizziness
  • Tachycardia
  • Exercise intolerance (depends on the day)
  • Clamminess (Had pallor very bad until I went on beta-blockers)
  • Anxiety
  • Blood pooling in limbs
  • Intolerance to heat
  • Feeling cold all over
  • Cognitive impairment (includes difficulties with concentration, brain fog, memory and/or word recall)
  • Cold hands, feet, and nose
  • Chills
  • Numbness or tingling sensations
  • Low back pain
  • Aching neck and shoulders
  • Noise sensitivity (can have TV on very low and hear it clearly, complain of others having TV too loud all the time).
  • Disequilibrium
  • Arrhythmias (irregular heart beats)
  • Feeling full quickly
  • Loss of appetite
  • Loss of sex drive (sometimes)
  • Muscle aches and/or joint pains
  • Swollen nodules/lymph nodes
  • Polydipsia (excessive thirst)
  • Restless leg syndrome
  • Night sweats (has gotten worse lately)

And then my own additions:

  • Unable to stand in one place for long without getting sick and bloated; have eventually almost fainted once because of this when I was fighting against my symptoms at a concert. Was at the front of the stage and started rushing and pushing to get out of the crowd, my vision became pitch white and I thought I wasn't going to make it until a medic seen me struggling. This has happened only once, because I most certainly learned from that experience. (VERY SCARY!)
  • Blurred vision

Oh and I am sure there is more. And this my dears, is why explaining our condition is so hard and why it is understandably, extremely difficult for those around us to understand and relate to what we go through. It just does not seem fair, but life's not fair right? We're fighters and that's why God knew we could handle it. Big hugs to you all & I hope you are all doing well! :wub:

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