How I Treat and Manage My Dysautonomia

When I was first diagnosed I was shocked to hear how I was supposed to manage my illness. I would be on beta blockers indefinitely, and have to have large amounts of water and salt everyday. I also was told compression socks could help me keep blood from pooling in my lower extremeties. And I would have to drink a minimum of two litres of water everyday. When it comes to fluid intake people who live with POTS should generally have to be drinking 2 litres of water as a baseline. The more we drink the better. When water is hard to get down soup and tea can help to replenish. The idea with salt is generally to help retain all the water we are drinking. It’s recommend to have around 5 grams of salt per day for most patients with POTS. We generally have low volumnes of salt and water so we always have to be on top of that. The more water we can retain the easier it is on the heart and blood flow through the body.

When it comes to taking beta blockers I take Metoprolol every 12 hours. The theory for taking beta blockers is so that it helps keep your heart beat and blood pressure at a consistent pace. Since some of the more prominent symptoms for POTS are cardiac related. It also helps my heart rate from spiking too high during a episode as my heart rate can get close to 200 bpms without any noticeable influence. It is common for patients with POTS to take salt supplements though my digestive tract cannot tolerate them. And most people who have pots are on a low dose beta blocker.

I also have a personal EKG monitor attached to the back of my cell phone. And I try to take one whenever I’m not feeling well or having a episode. My Cardiologist then monitors my results.

In addition to these treatments I’ve had to make some lifestyle changes. It’s been a learning curve but I’ve learnt over time what aggrevates my symptoms and how to lessen the risks of having a flare up. Some have been suggested by my cardiologist and some I’ve learnt after finding out the hard way.

  • Alcohol is a something I have to avoid as it promotes dehydration. Having a low fluid count for someone with POTS can exacerbate symptoms.
  • Low count simple carbohydrate diet, with high counts of protein.
  • Eating large meals in one sitting. Both this and avoiding excess carbs helps to prevent too much blood being redirected to the digestive system which in return lowers the risk of feeling symptomatic.
  • Prolonged standing.
  • Avoiding direct sunlight and high temperatures. POTS patients often have a hard time regulating body temperature and when we are either too cold or more often when we are too hot we tend to be highly symptomatice. I usually have a burn and become episodic especially when I overheat.
  • Watching my caffeine intake. Patients with POTS vary in how caffeine affects them. I’ve never had much of a issue until leading up to my diagnosis I was becoming tachycardic after having my second cup in the afternoon. It’s hit or miss for me.
  • Taking my mornings slow. Blood pooling for myself seems to be throughout my entire day, but getting ready in the morning means prolonged standing so it’s important I give myself time to rest, build up my energy and raise my legs.
  • Taking breaks in between activities.
  • Sitting with my legs elevated or laying flat.
  • Limiting my amount of driving long distances.
  • Wearing compression garments. This is one I am still experimenting with. I find that 15-20 mmgh does nothing for me and that’s what you can buy over the counter. I plan to get a prescription to have some high compression pairs fitted. I’ve also bought some online and will have to see how those work out in the following weeks.
  • Avoiding physical and emotional stress at all cost, easier said than done.
  • Avoiding atmospheric stress. Examples, shopping, concerts ect. Places with lots of walking, unable to control temperatures and highly stimulating environments such as concerts with bright lights, loud noise and prolonged standing and high temperatures that you cannot avoid.
  • Creating a physical activity routine. People with POTS can’t do high intensity workouts and can’t do cardio related workouts. Weight training, seated workouts such as rowing, limited yoga and swimming are all reccomend. I recently learnt that swimming in 4 ft deep water is essentially as if your wearing 90mmgh compression stockings. Swimming also creates a weightless affect so it’s low stress on the body.
  • Constantly replenishing with electrolytes.

POTS (Postural Orthostatic Tachycardia Syndrome) Is often unpredictable, and sometimes that means no matter what I do it may not be enough to prevent me from feeling symptomatic. Symptoms may evolve over time and management may change to accommodate that.

If you have any questions don’t hesitate to reach out by emailing me, commenting on this post or reaching out on Instagram. Thank you for reading and supporting myself, and Dysautonomia Awareness Month.

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