Dec 16, 2010

What is POTS?

POTS (Postural Orthostatic Tachycardia Syndrome) is a disorder of the autonomic nervous system.  The autonomic nervous system controls the involuntary functions of your body, like breathing, blood pressure, heart beat, digestion, etc.  These are the things that keep you alive, that you normally don't have to think about.  When you eat a cheeseburger, you don't tell your stomach " O.K. stomach, let's get to work and digest that cheeseburger."  Your stomach and the rest of your gastrointestional tract just do it for you, because they are controlled by your autonomic nervous system.

People with POTS have a problem with one or more parts of their autonomic nervous system, and since the autonomic nervous system is so important to good health, people with POTS can suffer from a long list of symptoms, although not every person with POTS has every symptom.  The "S" in POTS stands for "Syndrome" because doctors don't really know what exactly causes POTS.  The medical community calls a list of symptoms that are related and commonly seen together a "syndrome" to help with diagnosis, but there is no definitive answer at this time on what causes POTS in each patient.  POTS was only recognized as a syndrome and given a name by researchers at the Mayo Clinic in 1993, however other researchers had described its symptoms under various terms since the 1940s. 

Some POTS patients can find an underlying cause that has triggered their POTS - like a recent viral infection.  I have found two underlying causes for my POTS, autonomic small fiber neuropathy (death and damage to the nerves that control my blood vessels, amongst other things) in my legs and low aldosterone, the hormone produced by your adrenal glands that controls your sodium/potassium/water balance, and thus your blood volume and blood pressure.  However, my doctors have not been able to figure out what is damaging and killing my small fiber nerves, and what has caused my adrenal glands to stop producing aldosterone.  I am trying to find a doctor who is willing and able to run tests on my to help figure this out.  Like every well informed POTS patient, I am looking for an underlying problem that is hopefully treatable and reversible!

Here's a list POTS symptoms I've had, and for the record, I did not have any of these problems before I got really sick in January 2010.  Before all of this I was a healthy, active, athletic person. Thankfully I don't get every symptom at the same time, but these are the ones I've had often enough to remember:

-rapid heart beat (tachycardia), especially when standing up

-heart beat increasing 30 beats per minute (bpm) or more upon standing - I am usually 80 bpm when laying down and then 130 to 160 bpm as soon as I stand up, and it keeps going up the longer I stand up

-low blood pressure, made worse when I stand up


-vertigo (this is different that dizziness - for you older POTS patients, vertigo is that spinning/swirling feeling you get when lay down after you've had too much alcohol - in college we called it "the spins")

-fainting (also called syncope)

-almost fainting (pre-syncope)

-severe shortness of breath

-rapid breathing/hyperventilation that is not due to an emotional trigger

-sharp and dull chest pain in various places all over the front of my chest cavity

-sharp sudden stabbing pains and also dull aching/pressure pain all over my back, especially near the back of my armpits, between my shoulder blades and along the bottom of my rib cage in the back

-aching/sore neck and shoulders

-tightness in my chest and throat that makes it hard to breathe

-horrible night sweats

-heart palpitations

-thumping feeling of my heartbeat in my stomach, chest, neck, ears, eyes, thighs and fingers

-an very noticeable sinus arrhythmia (a sinus arrhythmia is when your heart beats faster as you breathe in, and slower as you breathe out - it is considered normal in healthy people, but mine has become more noticeable and more exaggerated since I developed POTS)

-seeing your pulse flash in your eyes, even when tey are closed and you are in a dark room

-extreme fatigue (as in, laying in bed for a week straight and not being able to go downstairs to get a glass of water)

-despite being tired, you can't sleep (try sleeping when you're heart is beating 130 bpm and your pulse is flashing in your eyes!)

-temperature sensitivity (getting REALLY cold and shivering when it's not even that cold out, getting REALLY hot and sweating when it's not that hot, taking along time to recover from being too cold or too hot)

-abdominal pain of every kind

-bloating, even after eating small, healthy meals

-feeling dizzy/lightheaded after eating (doctors call this post-prandial hypotension-it's because the blood is pooling in your belly to help digest your food)

-getting the chills after eating, and no amount of blankets or hot tea will make it go away

-acid reflux/GERD

-vomiting (almost every day for 3 months, but less often now)

-diarrhea (I'm not going to be shy about this - this is too important a symptom to leave out because it made me really sick.  I was getting is several times a day for months and months and I started to get malnourised, which can create very serious complications for someone who is already sick.)

-sudden weight loss (I lost 50 lbs., but I've gain about 10 back now.)

-random shooting/stabbing pains in my head, face, chest, and legs that actually make me scream out loud and drop to the floor, whatever I'm doing

-oversensitivity to pain and touch (when this symptom was really bad, I didn't even like getting hugged because it hurt and it seemed to overstimulate me - needles for the hundreds of blood tests I had were torture, even though I never had any problems donating blood or getting shots in the past)

-oversensitivity to noise (I'd jump out of my chair if someone knocked on the door or if my dog barked, and I'd get headaches very easily from quietly watching TV or listening to my I-Pod)

-heightened senses (I'm the first one to smell something weird, or to hear a strange noise in the distance, or to taste that milk has started to spoil)

-hyperreflexia (your reflexes are on overdrive and you literally jump at the slightest noise or unexpected touch)

-very dilated pupils, even in bright light (dinner plate pupils)

-light sensitivity (I get burning eyes, dizziness and headaches in bright light)

-irregular menstrual cycles and a worsening of most of the other POTS symptoms before and during menstruation

-the skin on my legs turns blotchy and purple if I stand up for a few minutes, and every time I take a bath (I can't stand in the shower most days)

-flushing (my arms, upper chest and face turn purplish red, seemingly for no reason)

-worsened allergies (I always had mild allergies since I was a kid - normal stuff like dust mites and dog dander, but never needed medication for them and never had any food allergies - now I'm on allergy meds everyday and I have to carry an Epi-Pen around with me)

-lactose intolerance for the first time in my life (and I'm a cheese addict!)

-suspected gluten intolerance (still waiting for more testing)

-chemical/medicine sensitivities (if the recommended adult dose for a medicine is 10 mg, I probably only need 1 mg even though I'm a 6 ft tall adult)

-pins and needles/tingling/creepy crawly skin sensations (especially when I'm given medications that effect the nervous system)

-dry mouth, eyes and skin (despite the fact that I'm drinking 100 oz. of water and juice per day)

-frequent infections/weakened immune system (I've had a constant sore throat for 11 months.  I've also had several unusual small cysts on my skin, which my dermatologist said were infected with a common and normal skin bacteria.)

-terrible fatigue, especially in the morning.  All of my symptoms tend to be worse in the morning, until about 3PM when I start to come alive a little bit.

-forgetfulness/spaced out feeling

-easily distracted/hard to focus

-not being able to find the word you're trying to say (doctors would call this recall or cognitive impairment)

Gosh, I'm getting tired just typing all of these symptoms up.  I've had other symptoms, but frankly, I'm having a brain fog moment and I can't think of them.  There are many more symptoms associated with POTS, and each POTS patient seems to present in their own unique way.  For more information on POTS symptoms, you can visit the Dysautonomia Information Network or the Wikipedia page on POTS.

Next time I will explain why some of these symptoms occur.

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