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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
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.
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
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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.
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
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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
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make a diet and eat vitamins
Posted Sep 10, 2017 by Annie 2050
