I Have Long-COVID-Linked Dysautonomia. What Should I Do Next?

Getting a diagnosis of dysautonomia can be scary, especially if this is the first time you’re hearing about this illness. If your dysautonomia diagnosis is caused by Long COVID, the new diagnosis can be doubly shocking. Not only do you have to contend with the lingering symptoms of Covid-19, but you also have to deal with a new illness that comes with it. 

So, what should you do in the days and weeks following your dysautonomia diagnosis?

Get Educated

Most people have never heard of dysautonomia, and the fact that the word “dysautonomia” describes a number of conditions rather than just one can make things more complicated. 

The first thing to remember is that you’re not alone. Over 70 million people^[1] live with dysautonomia around the world. There are support groups worldwide, and if there is no in-person group near where you live, there is likely an online group that you can join. Because of the symptoms associated with dysautonomia, many support groups function in a hybrid manner (in-person and online) or only online.

Additionally, familiarize yourself with the symptoms of your dysautonomia. Not every person living with dysautonomia experiences every symptom, but having an idea of what to expect makes it easier to prepare for all eventualities. 

You should also ask your doctor for a specific diagnosis of which dysautonomia you, have if you haven’t already received one. Again, this helps give you a better idea of what is in front of you and what you can expect in terms of symptoms. 

If your dysautonomia is a result of Long COVID, it’s likely that your dysautonomia is postural orthostatic tachycardia syndrome (POTS)^[2]. However, it’s possible that you have a different dysautonomia, which is why it’s important to get a proper diagnosis. 

Once you have a diagnosis and know what to expect, the next step is to ask your doctor for a treatment plan. Any treatment and management of dysautonomia should always be done under medical supervision, and your medical provider will be able to advise you about what your plan of attack should be. 

That said, there are some recommendations you will likely be given that you can start with immediately. Additionally, there are some tips and tricks you can use to make it easier to live your normal life even with dysautonomia^[3].

Let Your Gadgets Work for You

Some of the symptoms of dysautonomia and POTS are lethargy, brain fog, and even pain. There are days when these symptoms are manageable – and then there are days when you feel unable to get out of bed. If necessary, don’t feel bad about relying on gadgets to do some of your everyday tasks for you, so you can conserve your energy for things you love. Let your robotic vacuum cleaner clean the house, and your phone’s To-Do list remind you of pending tasks. You can even put gadgets on double duty – for example, let your dishwasher sanitize your toothbrush for you! Take full advantage of everything the 21st century has to offer you.

Consider Dietary Changes 

One of the biggest challenges people with dysautonomia face is nausea, diarrhea, and constipation, all of which can prevent them from eating regular meals^[4]. At the same time, missing meals can make symptoms of dysautonomia worse, creating a vicious cycle of symptoms.  

Some ways to ensure you get enough nutritious food include: 

• Eat smaller meals more frequently. Larger meals can worsen several dysautonomia symptoms, including lightheadedness when standing up because the blood is diverted to the stomach to aid in digestion^[5].

• Dysautonomia can result in dehydration, and drinking large quantities of alcohol and caffeine increases this risk. Alcohol should be avoided as much as possible. Caffeine can help some people feel better – if you are one of them, make sure to drink it in moderation.

• Research suggests that a gluten-free diet can help reduce dysautonomia symptoms^[6]. Consult your medical practitioner about whether this might be a possible path forward for you.

• As mentioned above, use technology to your advantage. Use slow cookers and crockpots to create one-pot meals when you don’t want to wash too many dishes, or meal prep one day of the week so that you don’t have to do any prep work when you’re feeling too fatigued. Make use of a grocery delivery service or food delivery app instead of opting for easy-to-access but low in nutrition processed foods.

Additionally, you’ll likely be advised to increase your salt and fluid intake. Water helps increase plasma volume and reduce dysautonomia symptoms, salt can help your body retain fluids^[7], and you must balance your salt and fluid intake to prevent dehydration. Your doctor will advise you as to what your new salt intake should be (the general DV is 2300 mg, but it can be significantly higher for people with POTS and/or dysautonomia).

There are several ways to increase your salt intake to meet your new recommended limit, including:

• Salting your food more
• Eating salty snacks as part of your smaller meals, such as broth, jerky, and even potato chips
• Taking salt capsules

Many people with dysautonomia opt for the latter for several reasons. For one, a lot of people aren’t able to eat overly salted food. Additionally, because dysautonomia brings a host of lifestyle changes, many people prefer to try and keep their diet as similar to the one they had before their diagnosis as possible.

Salt tablets like Klaralyte are extremely helpful in getting you the additional salt you need. Klaralyte contains 250g of sodium and 50g of potassium, helping you keep your electrolytes balanced. Additionally, you can take up to 2 tablets up to 5 times a day with water, allowing you to reach for Klaralyte whenever you feel you need a salt boost. 

That said, it’s always best to consult a doctor before you start taking salt capsules or increase your salt intake past the 2300 mg DV. They’ll be able to advise you on what course of action is best for you.

Exercise Slowly

A major challenge when living with POTS and dysautonomia is being able to exercise because of the associated fatigue and lightheadedness. At the same time, evidence indicates that exercise can help improve POTS and dysautonomia symptoms^[8].

Because of this, exercise is an important part of living with POTS and dysautonomia. It’s essential to slowly build up your tolerance to physical activity^[9], especially if you experience extreme lightheadedness and dizziness as part of your symptoms.

Additionally, you should always speak with your medical provider before you begin a new exercise regimen. They’ll be able to advise you as to whether you should start under the supervision of a trained physical therapist before attempting to exercise on your own and what exercises are best for your needs.

Finally, make sure there is always someone in your home who will be able to help should you fall do while exercising.

Ideally, you want to be able to build up to being able to exercise for about 20-30 minutes, at least 3 times a week^[10].

Final Thoughts

Living with dysautonomia and POTS can be challenging. However, it’s essential to remember that your diagnosis can be managed, and there are others in the same position as you who can help.

Sources Cited:

[1] https://coloradopaincare.com/living-with-dysautonomia/ 
[2] https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/covid19-and-pots-is-there-a-link 
[3] https://dysautonomiainternational.org/blog/wordpress/life-hacks-for-dysautonomia-patients/ 
[4] https://my.clevelandclinic.org/health/articles/17851-living-with-dysautonomia 
[5] https://www.dysautonomiasupport.org/diet-nutrition/ 
[6] https://smbsweb.med.buffalo.edu/COS/abstract_submission/abstracts/150253_McLaughlin_Abigail.pdf 
[7] https://www.npr.org/sections/health-shots/2021/05/22/996533041/after-months-of-a-racing-heart-and-burning-feet-a-covid-long-hauler-gets-a-diagn 
[8] https://www.sciencedaily.com/releases/2011/06/110620161159.htm 
[9] https://www.standinguptopots.org/livingwithpots/exercise 
[10] https://myheart.net/pots-syndrome/exercise-in-pots-syndrome/