Living with Dysautonomia / POTS. How to live with Dysautonomia / POTS?

Can you be happy living with Dysautonomia / POTS? What do you have to do to be happy with Dysautonomia / POTS? Living with Dysautonomia / POTS can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Dysautonomia / POTS


Living with Dysautonomia / POTS


Dysautonomia, specifically Postural Orthostatic Tachycardia Syndrome (POTS), is a complex and chronic condition that affects the autonomic nervous system. Living with Dysautonomia / POTS can be challenging, but with proper management and lifestyle adjustments, it is possible to lead a fulfilling life.



Understanding Dysautonomia / POTS


Dysautonomia refers to a dysfunction of the autonomic nervous system, which controls involuntary bodily functions such as heart rate, blood pressure, digestion, and temperature regulation. Postural Orthostatic Tachycardia Syndrome (POTS) is a specific form of dysautonomia characterized by an abnormal increase in heart rate upon standing up.



Medical Management


Proper medical management is crucial for individuals with Dysautonomia / POTS. It is essential to work closely with a knowledgeable healthcare team, including a cardiologist or neurologist specializing in autonomic disorders. Treatment options may include:



  • Medications: Certain medications can help manage symptoms such as beta-blockers to control heart rate, fludrocortisone to increase blood volume, or medications to regulate blood pressure.

  • Fluid and salt intake: Increasing fluid and salt intake can help maintain blood volume and improve symptoms. Consult with a healthcare professional to determine the appropriate amount for your specific needs.

  • Physical therapy: Working with a physical therapist can help improve muscle strength, balance, and coordination, which may alleviate some symptoms and improve overall function.

  • Lifestyle modifications: Making certain lifestyle adjustments, such as avoiding triggers like heat or excessive physical exertion, can help manage symptoms and prevent symptom exacerbation.



Self-Care Strategies


Aside from medical management, implementing self-care strategies can significantly improve the quality of life for individuals with Dysautonomia / POTS. Here are some important self-care practices:



  • Hydration: Staying well-hydrated is crucial to maintain blood volume. Carry a water bottle with you and drink fluids regularly throughout the day.

  • Diet: Follow a balanced diet that includes an adequate amount of salt and nutrients. Consult with a registered dietitian to create a personalized meal plan that suits your needs.

  • Exercise: Engage in a tailored exercise program that focuses on low-impact activities such as swimming, cycling, or walking. Start slowly and gradually increase intensity under the guidance of a healthcare professional.

  • Rest and pacing: Listen to your body and prioritize rest when needed. Pacing activities throughout the day can help manage energy levels and prevent symptom flare-ups.

  • Stress management: Stress can exacerbate symptoms, so finding effective stress management techniques such as deep breathing exercises, meditation, or engaging in hobbies can be beneficial.

  • Support network: Connect with others who have Dysautonomia / POTS through support groups or online communities. Sharing experiences and advice can provide emotional support and valuable insights.



Adapting Daily Life


Living with Dysautonomia / POTS often requires adapting daily life to accommodate symptoms and limitations. Here are some practical tips:



  • Modify your environment: Make your living space more accessible by removing trip hazards, using assistive devices, or arranging furniture to minimize exertion.

  • Use mobility aids: Consider using mobility aids such as canes, walkers, or wheelchairs when necessary to conserve energy and prevent falls.

  • Plan ahead: Prioritize activities and plan your day to conserve energy. Break tasks into smaller, manageable segments and allow for rest periods in between.

  • Communicate with others: Educate your family, friends, and coworkers about your condition to foster understanding and support. Clearly communicate your needs and limitations.

  • Manage temperature: Extreme temperatures can worsen symptoms, so dress appropriately for the weather and use cooling or heating devices as needed.

  • Advocate for yourself: Be your own advocate by staying informed about your condition, seeking appropriate medical care, and actively participating in your treatment plan.



Living with Dysautonomia / POTS can be challenging, but with proper medical management, self-care strategies, and adaptations to daily life, it is possible to lead a fulfilling and meaningful life. Remember to consult with healthcare professionals for personalized advice and support.


by Diseasemaps

Many patients with POTS suffer with anxiety and depression because the mechanisms of all three of these conditions result from the autonomic nervous system. However, more often than not, anxiety and/depression is caused from being sick (not the other way around). Learning to live with this condition is hard but doable. You can find a way to be happy and have a good quality of life with proper management.

4/19/17 by Nikki 2192

As long as you're following what your doctor has mentioned to help with pots you can do just fine. For some people it's harder than others.

4/27/17 by SaraW13 1050

Supportive family and friends, don't let it take over your life take control of it

4/27/17 by Melissa 1100

Live every day like it's your last, meditation is very helpful, spend time with friends and family, remember all the fun and happy moments in your life especially when you're having a bad day

8/17/17 by Miranda 2150

Personally I hate it when summer comes around, I always find my POTs is way worse! But other than that I am generally happy with my life.

9/27/17 by Lbond94 4100

After at least 14 - 15 years - I am still working this out. Can I get back to you when I have it sorted? Seriously - just know your limitations and work within them. You may have to change your big life goals a little - but it doesnt mean you have to stop everything. It may cut back on everything for a while til you get used to it and work out what you are and are not capable of. Just go with the flow.

12/3/18 by Shell 800
Translated from spanish Improve translation

If you can live happy one should learn to be resilient, to be empowered and to learn about the disease and get to know it and understand it well. Enter to support groups online or face-to-face. See and learn about success stories of people with this disease that have been known to carry the disease and have managed to fulfill dreams or career goals

6/2/17 by Aurora Saez. Translated
Translated from spanish Improve translation

In my case, it is very symptomatic, the way to survive is with medication and a good physical exercise regime. You can be happy, even if it is passed bad moments. And the ones who suffer from this tend to get depressed, but just as there is to keep fighting.

7/5/17 by Ana. Translated
Translated from spanish Improve translation

no, you can't because you have no energy to be happy

9/10/17 by Annie. Translated
Translated from spanish Improve translation

Having dysautonomia is not the end of the world, this condition only involves making changes in diet and the daily routine; explain to the people that surround us and that are always close to us all is a disease for which we understand and support us, it is all a question of information and of attitude and living the day-to-day.

11/9/17 by Katerine. Translated

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