My Crohnic Life

– LIFE WITH AN INVISIBLE DISEASE – 

Ahhhh, if I had a dime for every time I have had to explain this illness to a doctor, I’d be able to pay for salty supplements for the rest of my life.

POTS (Postural Orthostatic Tachycardia Syndrome) is a disorder that causes orthostatic intolerance, as one of the main symptoms. Basically, the blood vessels in my legs are weak and unable to effectively pump blood to my brain when I change positions (i.e. sitting to standing) and my blood pressure tanks. To compensate, my heart rate rapidly increases to get oxygen to my brain. If this clusterf*ck of a survival system fails, I pass out.

POTS
POTS

Have you ever experienced a head rush after standing up too fast? You know, maybe you haven’t had enough water, and you’ve been lying on the couch, binging Real Housewives for the past 7 hours? (I don’t pass judgment because same). This is what POTS is like, except these “head rushes” are referred to as episodes.

During these episodes, my vision goes black, I can’t hear anything, I lose my balance, Vertigo floods my head, I can pass out, etc. After this portion passes, the episode can last for hours; I become agitated, extremely irritable, tense, plus I get headaches, nauseous and my body vibrates from shaking (especially my hands). I become irrational, anxious, hostile and volatile. According to my general physician, the reaction sparked by a POTS episode, is comparable to a diabetic experiencing low blood sugar.

So, the treatment? Salt!

The reason potsies quickly reach for salt is because it raises blood pressure. It gives me almost instantaneous relief when I’m in an episode, and I quickly snap out of it (most of the time).

I constantly have salty supplements such as Nuun tablets, Liquid IV and Limon 7 packets (a Mexican candy that consists of a salt and lemon powder) shoved in my purse. I can also find some relief with drinking water or caffeinated drinks such as Coca-Cola. Restorative yoga and inversions can also work wonders for me; it regulates my heart rate and gets my blood flowing.

Although there’s no cure, this illness can typically be manageable with the proper medical care and education regarding the syndrome. Like every disease, every person experiences it differently and at different levels of severity. There is a major lack of awareness of invisible illnesses in general, but this one has to be among the least visible of all; the majority of medical professionals are even baffled by the phrase “POTS” (however, it seems as if awareness is increasing).

My advice, if you have POTS is to:

  • Become as educated about the illness as possible; knowledge is power!
  • Talk about it with those close to you (that you trust), so that they can HELP you. When I’m experiencing an episode, my brain fog clouds my judgment to the point where I don’t even think to eat salt or drink water sometimes; my family and boyfriend are aware of the warning signs and suggest salt for me, if need be.
  • Keep salt handy! Keep it next to your bed, in your backpack, purse, car, locker, bathroom, friends’ houses, etc.
  • Advocate for yourself. This can be hard as f*ck. In my experience, doctors can be quick to bypass these symptoms because they aren’t educated about POTS & don’t want to spend time listening. Make them hear you! Your concerns, questions, anxieties, feelings and symptoms are VALID.

My advice if a loved one has POTS is to:

  • Again, become as educated about the illness as possible; knowledge is power!
  • Listen to what your loved one needs; don’t pass judgment and don’t dismiss their feelings. They trust you with this delicate & personal information; what they’re feeling is REAL; they question their own symptoms enough.
  • You are NOT their doctor; your loved one knows better than you.
  • Watch for the warning signs of an episode (irritability, confusion, dizziness, shakiness, spaced-out looks, etc.). Grab them some water and salt and gently encourage action toward resolving the episode.
  • Advocate for your loved one, but never speak over them.  
  • Show them love & support; that’s what they need most from you.

Sincerely,

One salty b*tch

xx