Dysautonomia Awareness Month: So you’re POTSy. What does that mean?

The primary symptom of POTS is “orthostatic intolerance”.  What..? It means that your body objects to you being upright and your heart has a tantrum beating more than an extra 30 bpm when you try to do something  astoundingly difficult such as standing up. In my case my heart tends to jump around 35 to 37 bpm.

There is more than one flavour of POTS so the symptoms not only vary for each of us day to day, but from person to person.

My heart has a particular objection to me doing something like cooking, especially pealing potatoes or (for some reason) making scones.

When I stand up for any length of time (more than 10 minutes) I feel dizzy and sick, my ankles swell and my legs get rashy. Not pretty. (Maxi dresses rule!) Sometimes the tacky will even out but my oxygen saturation will drop. My heart gets my lungs onside to threaten strike action should I try something like going upstairs or trying to stay in the shower too long.

The other symptoms of being POTsy are:

  • disabling fatigue; bone aching weariness.
  • Tachycardia – that’s the fast heart rate. For POTS is goes up by more than 30 bpm when you stand up.
  • severe headache/migraine (I get aura so I can usually medicate it to sensible proportions before a full on migraine arrives) but the back of the head pain seems to be more stubborn.
  • Myofascial pain with trigger points. This is often dx as fibromyalgia and may be why the research is pointing to FM being a dysautonomic disease.
  • Dizziness and near fainting or actually fainting. (syncope is the posh word)
  • Nausea and occasionally cyclical vomiting.
  • Standing up makes you need the loo. (annoying!)
  • exercise intolerance (I find the stairs are like Everest!)
  • Claminess (this usually goes with the nausea for me; yuk)
  • Anxiety (thankfully so far I haven’t had to deal with this)
  • Sleep disorders (yup) Those who can get tested often show lack of delta sleep – that’s the healing one.
  • flushing (yuk. I hate this)
  • hypotension (not me thankfully though my high BP will suddenly drop from high to just below normal which feels horrible)
  • Cognitive impairment (concentration problems, foggy brain, word problems, memory problems)  I entertain many people with my word confusion. Told Avila to put her pjs on instead of saying Beaver’s uniform! And everything is a dishwasher for some reason!
  • narrowing of upright pulse pressure (yes, lots. It’s often around 10 should be around 40) – could be a sign of low blood volume.
  • cold extremities – I have Reynaud’s, but I also have the “cold meat” body parts.
  • low blood volume. (Don’t know if I have this as yet but my very low pulse pressure would indicate it)
  • Chills – I also get uncontrollable shivering even when I don’t feel cold. My body’s temperature control is bust. So while everyone else is wrapped up I’m opening doors and windows desperate for cool air, and when they are in shorts I’m in three shawls.
  • Hypertension (yup, although apparently this is rarer than hypotension) It’s probably a sign of  HYPERADRENERGIC POTS
  • hyperventilation (not so far, but my oxygen sats can drop to 85 on a bad day) I get really breathless at the slightest thing and having asthma means I wheeze like an old steam engine.

    making scones; pulse 145 SATS 86.

  • restless leg
  • Low back pain and shoulder and neck pain
  • noise sensitivity  (occasionally for me with some hearing loss now and then)
  • light sensitivity (very often. I find car head lights at night really painful) I also have night blindness.  Blurred vision and tunnel vision is all part of the daily surprises.
  • problems with balance or gravitationally challenged. I have a tendency to hug door frames, walls and radiators, attack random bookcases and grab random people to keep the floor at bay. Makes me look very affectionate!
  • arrhythmias – missing or irregular heart beats. These feel awful. They are difficult to monitor on my little blue thing as it fuzzies out when it can’t get a regular pulse.

There’s more but that’ll do. Many doctors find the complexity and sheer number of symptoms overwhelming so instead of thinking, “If I find this difficult, how must it be for the patient,” they say “Go away, it’s all in your head.” I don’t think I’ve read a single POTS story or Fibromyalgia story that doesn’t have the part where doctors were brutally dismissive. It’s well past time doctors learned just basic manners.

It is said that Fibromyalgia, ME/cfs, Dysautonomias such as POTS are all “invisible illnesses”.  I don’t know how anyone can watch someone with these diseases and think they are invisible.  It seems to me that we wouldn’t need all these AWARENESS campaigns if people just paid attention.


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