Symptoms

One reason why POTS is so difficult to diagnose is due to the excessive amount of symptoms that patients experience.  Doctors automatically jump to the conclusion that you are a hypochondriac or crazy when you hand them a list that looks like this.  I know this from personal experience.  I promise, if you experience any/all of these symptoms, you are NOT crazy.  The conditions in blue are symptoms that I do not experience:

Lightheadedness
Dizziness
Fainting or near fainting (can occur when standing, sitting, or laying down)
General weakness/Fatigue
Loss of sweating
Excessive sweating- (you can experience both excessive and loss of sweating.  Certain areas of my body will no longer sweat, but when I am sleeping, the back of my knees are soaking wet)
Delayed gastric emptying
Bloating after meals
Nausea
Abdominal pain
Constipation or diarrhea
Excessive urination
Blurred or tunnel vision, floaters
Chest Pain/Palpitations
Shortness of breath
Tremors
Sleep disorders (un-refreshing sleep or nightmares)
Headaches
Anxiety (Probably due to never knowing when symptoms will arise)
Blood pooling in limbs- causes legs feel heavy and appear purple
Intolerance to heat- exacerbates symptoms
Feeling cold all over- especially in hands and feet because of blood pooling
Low blood pressure upon standing
Cognitive impairment-  difficulties with concentration, brain fog, memory and word recall
Low blood volume

Numbness or tingling sensations

Aching neck and shoulders- from reduced flow of cerebrospinal fluid

Noise sensitivity- Certain noises can activate episodes
Light Sensitivity
Sensitivities to certain smells
Arrhythmias- irregular heart beats.  A feeling of fluttering in your chest.
Chemical sensitivities
Feeling full quickly
Food allergies/sensitivities- White sugars/carbohydrates work quickly, but make symptoms worse when you experience a sugar crash.
Hyperreflexia- aka double jointed.  May be related to Ehlers-Danlos Syndrome.
Irregular menstrual cycles
Loss of appetite
Excessive thirst- normally associated with increased urination, since your body is outputting all of your fluids.
Weight loss or gain
Feeling detached from surroundings
Restless leg syndrome- can come from the blood pooling in the legs

These symptoms can vary not only from day to day, but minute to minute.  You never know when a seemingly "good day" can take a turn for the worse.  A "bad day" generally doesn't turn around.  On these days it is important to not overexert one's self, because being in an upright position will exacerbate symptoms.  This can seem daunting, but just remember that tomorrow is a completely different day and you will feel better.  Optimism is the most important thing!

I'd love to hear your comments!

My Story

This blog has been a long time coming.  I am a 20 year old junior in college and I cannot remember a time when I did not feel like I was going to pass out in the shower or when I first got out of bed in the morning.  It was just a few months ago that I realized that not everyone blacked out every time they stood up or when they tilted their heads up.

It all started when I was a junior in high school.  I had heavy menstrual bleeding-- so strong that I couldn't keep consciousness and wound up in the hospital on and off for two months due to my fainting and period troubles.  After these issues were resolved, I thought all my problems were over, until I right before I went off to college.  I fainted in sports medicine class; when I went to the pediatrician, she told me that a lot of young girls faint and not to worry about it.  I was at a medical camp shadowing an orthopedic physician when I fainted next.  The doctor said that many people faint when they see medical procedures; I knew this couldn't be possible since I had been standing at a work station, not even close to a patient.  I went to a cardiologist who did various tests including and EKG and a 24 hour heart monitor holster.  The results came back relatively normal.  He told me to be thankful that I didn't pass out everyday and he instructed me to drink Gatorade every once in a while.

When I moved to college my appetite went away, I developed extreme stomach pain, and I lost 15 pounds.  I came home for summer and had ankle surgery for a dance injury and continued to lose weight, faint, and be overwhelmed by abdominal pains.  By my sophomore year, I would have days when I couldn't get out of bed for fear of fainting, and when I could get out of bed, I would spend my days nearly getting sick.  I tried to stay connected with my friends, but they couldn't understand why I needed to sleep all the time.  Even taking a shower or walking around my apartment took a massive toll on me.

I got down to a terrifying 95 pounds.  My parents were incredibly concerned and they never left my side.  They fought for me when I wasn't strong enough to fight for myself.  I went to 14 doctors: pediatricians, general practitioners, an eating disorder specialist (who told me that I was faking to get attention), gastroenterologists, and naturopathologist.  I was subjected to EKGs, an endoscopy, ultrasounds, a CKG, gallbladder removal, blood tests, gastric emptying tests, and a small intestine barium study.  Everything was normal.  Doctors chose to ignore my syncope symptoms and focused on my intestinal problems.  When they couldn't find anything, they gently implied that I was faking.

Finally, doctor #14, a neurologist, offered me the answers that I had been so desperately looking for.  After an EEG, a tilt table test, and an MRI, I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS, which is a form of dysautonomia.  Every day is a still a challenge, but I am so relieved to finally know what has been plaguing me for years.  I wanted to write this blog because POTS is so rarely diagnosed, and many doctors don't know about it.  We need to raise support for dysautonomia awareness.