A POTS Primer

 In my daily encounters, I'm finding more and more people who are dealing with Postural Orthostatic Tachycardia Syndrome (POTS) or other similar autonomic system dysfunctions.  There's honestly too little information out there about what life with this condition is like, what kinds of treatments help, and what accommodations a person can make to make life safer and easier. Please note: none of this post is medical advice; I'm not a doctor. There are affiliate links at the end of this post for some of my personal favorite products; if you follow these links, I may earn a small commission at no extra cost to you.

Let's start at the beginning: 

Autonomic System- this system in your body is responsible for everything your body does subconsciously in response to stimuli. It is involved in things like blood pressure, digestion, and body temperature. If you change position, your autonomic system should adjust your blood pressure so blood keeps flowing to your head and extremities. If you eat something, muscles should activate and gastric fluids should be introduced to the digestive tract to process your food. As external temperatures shift or you move to a different environment (inside vs outside) your autonomic system should be adjusting your body's heat tolerance to keep you comfortable, or should make you shiver or sweat if the environment is outside of ideal range.  None of these things require your conscious thought.

Some indicators that your autonomic system is not functioning normally include dizziness when standing (sometimes to the point of blackouts or fainting/syncope), digestive issues, being unable to get warm or cool off in a setting with average ambient temperature, sweating when not exerting energy, and fatigue. Often these issues are worse when a person is in a hot or humid environment (including a shower), dehydrated or tired, and issues like feeling lightheaded usually subside when lying horizontally.

Depending on location, the type of doctor responsible for the care of this condition varies.  There are not currently very many autonomic specialists, and the field as a whole is massively understudied.  In some regions, a neurologist will oversee care for POTS patients, while in others a cardiologist is the primary for this issue.

Often, besides anecdotal testimony, doctors will perform a tilt table test. A patient is hooked to monitors that record heart rate, blood pressure, sweating, etc. and then asked to lay flat on a table and secured by straps at the shoulders and hips. A baseline reading is taken for about 10 minutes. The table is then changed to a near standing position (actually about 70 degrees instead of a vertical 90) and the monitors continue, while the patient notes any changes the readings may not capture like pain, shaking, or vision issues. This monitoring continues for 20 minutes, or until the patient loses consciousness, at which point they are laid back horizontally. Diagnostic criteria includes a significant change in heart rate or blood pressure while upright.

For pharmaceutical treatment, a patient may be given blood pressure medication (either to increase or decrease depending on their baseline). Many patients with POTS receive no medication, however, and treat symptoms with lifestyle changes. The common recommendations include hydrating, increasing electrolyte intake (more than recommended for the average person), wearing compression garments to limit blood pooling in any particular area, finding ways to do daily activities while seated instead of standing, and avoiding hot and humid environments.

Use ice packs or heating pads to help regulate temperatures. Take cold showers and use a shower chair to reduce risk of issues, and I personally can only use one arm at a time to wash anything above my shoulders. Invest in and wear good quality compression socks in the 20-30mmg range. Compression leggings, shirts, and gloves may also be helpful; I use them especially when flying. Increase your water intake (the average person is told (body weight lbs)/2=oz per day, so aim above that at a minimum). Eat more salt and/or add electrolyte supplements to your drinks or food. I use a wheelchair when outside my home, but use rolling office chairs and stools any place I used to stand (there's stools at the stove, the coffee station, my bathroom sink, at my fridge that dispenses ice water, and the top and bottom of the stairs). Previously, I used a rollator walker to lean on while out and about, because it meant I always had somewhere to sit at a moment's notice, others use special canes with fold out seats for the same reason.

In some cases, there have been service dogs trained to alert to pre-syncope conditions, allowing their person to get somewhere safe to sit down instead of collapsing suddenly. Most smart watches now come equipped with heart rate monitors that can be set to alert if there's a sudden spike without physical activity. There are other health trackers that are coming to market more specifically designed for those with POTS, and so far the reviews I've seen have been good.

Unfortunately, the number of cases of POTS diagnosed is increasing rapidly, as it seems to often correlate with Long Covid cases. While that's not exactly good news for those patients, it does help bring more attention to this debilitating condition and more research is being started that may help advance treatment options.

Socks: https://a.co/d/6fwwePy

Ice packs:
    Hands: https://a.co/d/35TrpUT
    Feet: https://a.co/d/6SDb7a3
    Shoulders/back: https://a.co/d/7o5O4Re
    General use: https://a.co/d/7qJZ5GX

Shower stool: https://a.co/d/evjm6Im

Seating:
    Vanity: https://a.co/d/4oI3u1o
    Kitchen: https://a.co/d/6bZz9i7
    For Travel: https://a.co/d/1BFOKwt

Rollator: https://a.co/d/g7p2j1U

My favorite pill holder: https://a.co/d/ee4D1jJ

Med timer lids: https://a.co/d/5VM9zeQ

Grabber: https://a.co/d/cGf2eBD
    Foldable grabber for car: https://a.co/d/aC5YXCp

Neck fan: https://a.co/d/g8IU9gZ

Table fan: https://a.co/d/cy97fYi

Fan for travel: https://a.co/d/gto5n86

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