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Which advice would you give to someone who has just been diagnosed with Dysautonomia / POTS?

See some advice from people with experience in Dysautonomia / POTS to people who have just been diagnosed with Dysautonomia / POTS

Dysautonomia / POTS advice

Advice for Someone Diagnosed with Dysautonomia / POTS


Receiving a diagnosis of Dysautonomia or Postural Orthostatic Tachycardia Syndrome (POTS) can be overwhelming and confusing. It is important to remember that you are not alone, and there are steps you can take to manage your condition and improve your quality of life. Here are some essential pieces of advice to help you navigate this journey:



1. Educate Yourself:


Take the time to learn about Dysautonomia and POTS. Understanding your condition will empower you to make informed decisions about your treatment and lifestyle adjustments. Research reputable sources, consult medical professionals, and connect with support groups or online communities where you can learn from others who have similar experiences.



2. Build a Support Network:


Surround yourself with a supportive network of family, friends, and healthcare professionals who understand and empathize with your condition. They can provide emotional support, help you navigate medical appointments, and offer assistance when needed. Consider joining local or online support groups to connect with others who share similar challenges.



3. Find a Knowledgeable Healthcare Team:


Seek out healthcare professionals who specialize in Dysautonomia or POTS. These specialists will have a deeper understanding of your condition and can provide tailored treatment plans. Collaborate with your healthcare team to develop a comprehensive management strategy that addresses your specific symptoms and needs.



4. Prioritize Self-Care:


Managing Dysautonomia or POTS requires a holistic approach to self-care. Focus on maintaining a healthy lifestyle by prioritizing adequate sleep, regular exercise, and a balanced diet. Avoid triggers such as excessive heat, stress, and certain medications that may exacerbate your symptoms. Listen to your body and rest when needed.



5. Gradual Exercise Program:


Engaging in regular exercise can help improve your symptoms and overall well-being. However, it is crucial to start slowly and gradually increase your activity level. Work with a physical therapist or exercise specialist who understands Dysautonomia or POTS to develop an individualized exercise program that suits your abilities and limitations.



6. Stay Hydrated:


Hydration is essential for managing Dysautonomia or POTS. Drink plenty of fluids throughout the day, especially water and electrolyte-rich beverages. Avoid excessive caffeine and alcohol, as they can worsen symptoms. Be mindful of your body's hydration needs and adjust your fluid intake accordingly.



7. Manage Stress:


Stress can significantly impact your symptoms, so it is crucial to find effective stress management techniques. Explore relaxation techniques such as deep breathing exercises, meditation, yoga, or engaging in hobbies that bring you joy. Prioritize activities that promote relaxation and emotional well-being.



8. Communicate with Your Employer or School:


If you are employed or attending school, it is important to communicate with your employer or educational institution about your condition. Discuss any necessary accommodations or modifications that can help you manage your symptoms while still fulfilling your responsibilities. Open and honest communication is key to maintaining a supportive environment.



9. Keep a Symptom Journal:


Maintaining a symptom journal can help you track patterns, identify triggers, and communicate effectively with your healthcare team. Record your symptoms, their severity, and any potential triggers or alleviating factors. This information will assist your healthcare team in adjusting your treatment plan as needed.



10. Be Patient and Kind to Yourself:


Living with Dysautonomia or POTS can be challenging, and it may take time to find the right combination of treatments and lifestyle adjustments that work for you. Be patient with yourself and celebrate small victories along the way. Remember that self-care and self-compassion are essential components of managing your condition.



Remember, this advice is not a substitute for professional medical guidance. Always consult with your healthcare team for personalized advice and treatment options. With the right support, self-care, and management strategies, you can lead a fulfilling life despite your diagnosis of Dysautonomia or POTS.


Diseasemaps
10 answers
Find a doctor whose familiar with the condition and research as much as you can in you're own. You are your own best advocate!

Posted Apr 19, 2017 by Nikki 2192
Stay hydrated. Water is now your best friend. Don't over work yourself. I know it may be hard but you can do this. Also, adding salt to your diet can very much benefit you with lessening your symptoms.

Posted Apr 27, 2017 by SaraW13 1050
Learn to adjust not everyday is the same, listen to your body

Posted Apr 27, 2017 by Melissa 1100
Be ready for random bursts of energy followed by long periods of staying in bed because you literally cannot leave it. There are people out in the world just like you so believe me when I say you're not alone!

Posted Aug 17, 2017 by Miranda 2150
My advice to you would be to not dwell on it, I mean of course allow yourself some time to adjust but after that "mourning" period get back to your daily routine, don't allow some illness to take over your life.

Posted Sep 27, 2017 by Lbond94 4100
Just research as much as you can - search everything on it on the internet, most medical 'professionals' will have read maybe one or two articles and think they know everything.... you will find a handful really who are true experts in the field and will admit that they do not know everything but are always looking for more answers - THEY are the ones to listen to and look for......

Take note of all your symptoms, your HR, what sets it off with the changes, your BP, whether its changes in weather, foods, stress levels, etc that change things for you, your dizziness, pain levels etc - just track it all ...... It can be your life saver if you have to go to your doc or to the ER for some reason with it..... Keep a folder with all your discharge notes, along with the symptoms etc and make sure you take it with you - have your current meds, current diagnoses and whatever else you can think of.... its all helpful.

If I had had those notes and stuff with me to start with - I think I would have been taken more seriously than I was initially.

Posted Dec 3, 2018 by Shell 800
Translated from spanish Improve translation
Learn more about the disease and ask the doctor all your questions, pages, and blogs that discuss the topic.
ask about which medications you can take, and which not.
Don't feel guilty since you don't get so provoked.

Posted Jun 3, 2017 by Aurora Saez 3201
Translated from spanish Improve translation
Take the recommended medication, it is very important to get a good doctor who specializes in dysautonomia and if there are no good doctors where you live, search for it in another country. I recommend to always be aware of the new developments to improve the quality of life.

Posted Jul 5, 2017 by Ana 2050
Translated from spanish Improve translation
make a diet and eat vitamins

Posted Sep 10, 2017 by Annie 2050

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