I am 13 years old, and in the 7th grade. A couple days ago I was diagnosed with dysautonomia. No one in my family has it but me, so it wasn't genetic. My life is not normal anymore. My legs give about at least twice everyday, and my parents are buying me a wheelchair. My hands turn blue and I lose control of them mostly during stress and temperature changes. I get short of breath, and I have trouble concentrating, and I have memory loss or brain fog. I get headaches,nausea,lightheaded, dizzy, and I tend to go cross eyed. How can I have a normal life with dysautonomia?
With your diagnosis did they put you on medications? If so, you need to give them time to work. It is trial and error. My son is 15, was diagnosed last June and we are still trying to get it under control.
Most of his symptoms are under control with medications, but we are having trouble with the nausea. Don't give up and don't overly push yourself, as it can make you worse. I've read with teens you are more likely to grow out of it, so just hang in there.
Be sure to drink plenty of water and get extra salt in your diet.
I am sorry that you have been diagnosed w/ this disease.
Just as Christy had said.......Don't push yourself and certainly don't be to hard on yourself.
And the drinking PLENTY of water and some Gatorade, also have you ever
heard of or tried Smart Water? It was recommended to me by my Cardiologist and Electrophysiologist.
You are in thought and prayer. Everything is goiung to be Ok! :)
Make sure to continue to stick here with our forum as you will learn alot here and you can come here to vent and ask questions, or just to hang out and say HI!
It saddens me when I hear of people so young suffering with this x
But as the ladies above have said teenagers generally have a good prognosis so the important thing for you to do at the moment is to find medications that help you, drink PLENTY of water, increase your salt intake and you could also try wearing compression stockings (not a good look I know - but they help many people).
Follow the link below and it will give you more links for websites that are for younger people with dysautonomia, you may have already found these, but if not give them a try:
Did they do a brain scan on you? Test your thyroid function? Did they test your blood iron & ferritin levels? What about your blood sugar level fasting? Even with dysautonomia, a person can have more than one thing wrong with them. Even with a normal CBC, low iron can cause symptoms- take it from someone who has dysautonomia herself.
Did you know that low iron can cause dizziness, difficult in concentration, tachycardia (which can lead to shortness of breath), light-headedness, headache, cold skin, and weakness amongst other symptoms according to wrong diagnosis website? Did you know low potassium can cause weakness of your legs even to the point of feeling paralyzed? What tests did they run to definitively diagnose you with dysautonomia? And regarding family- are you sure no distant relatives suffer from it? I have a second cousin who has, like me, been diagnoses with postural orthostatic tachycardia syndrome. She also suffers from migraines as do I. And of course the running in families always has to start with someone!
I just think they should be thorough in testing for other possible causes of your symptoms before settling on this one & I hope they have been. If not, I'd be pushing for more diagnostic testing to rule out some other things before acceptance of this diagnosis.
Check out xxxxxxxxxx.com - Tyler has done a fantastic job of adapting to it. Also, check out xxxxxxxx.com for videos of others adapting their life style to cope with it. Just keep in mind that adapting to our circumstances is part of life - with or without an illness. Money, family, learning abilities all give us cause to adapt.
Hi - saw your post in medhelp.com My 11 yr old daughter is newly diagnosed and I am trying to find pre-tens/young-mid teens to talk with her about coping methods and to help her feel so not alone. I know it is creepy to be contacts by a grownup, but here is her blog - kaitydid-disautonomia.blogspot.com .
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