DizzyGirls Posted February 16, 2018 Report Share Posted February 16, 2018 My daughter was just diagnosed with dystonia on Monday. She has Ehlers Danlos Syndrome along with her Dysautonomia. The neurologist didn't give us an in-depth explanation about why the dystonia, but he believes it mostly likely has to do with her dysautonomia. Another doctor that we see had said that she believes my daughter's Sympathetic Nervous System is a little "lazy" and only works when it absolutely has to. Thus why my daughter's dystonia is worse inside, than outside. Being outside, the body has to be alert and aware of it's surroundings, so her Sympathetic kicks into gear, but (for my lack of being able to explain this any better) inside the house it doesn't seem to be too worried. I know this is odd. Does anybody have Autonomic related dystonia? And, what are you using to treat it? Quote Link to comment Share on other sites More sharing options...
WinterSown Posted February 16, 2018 Report Share Posted February 16, 2018 I am so sorry, you and your girls never get a break :-( I hope she can begin feeling better soon. I did find some information with a doctor giving a thorough lecture in a video.https://www.dystonia-foundation.org/what-is-dystonia If you don't have a DPT yet then one may be in her future--physical therapy is suggested to help. Many centers have a pediatric DPT on their staff so she will get right care.https://www.dystonia-foundation.org/living-with-dystonia/non-drug-therapies/physical-therapy My very best hopes and wishes, Trudi Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 18, 2018 Report Share Posted February 18, 2018 Sorry to hear your daughter is still struggling . I taught a child who had Dystonia mainly in her neck she received botox injections to relax the muscles she also wore a body brace . However she didn't have dysautomonic problems . I hope your daughters find some relief soon Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted February 18, 2018 Author Report Share Posted February 18, 2018 Thank you both for your words of wisdom! When he diagnosed her with dystonia, I thought, great! A diagnosis! Then I thought, wait a minute, dystonia is a symptom. What's causing it?? So going on the fact he mentioned dysautonomia, we will start there. I asked her if she wanted to try one of the clonazepam that he prescribed. She said, "nope, I've got energy today and things to do!" It wasn't a lot, but she had some plants that needed tending and was going to help me clean out our back room. Even though she has trouble getting around, she doesn't let it stop her. I don't blame her. I just want to make sure that it doesn't get worse if we aren't treating it. She can manage around the house, it's not always pretty, but when she's bad she can just stay put. Just would like to know what part of the dysautonomia is triggering it and how to make it better. Hers is generalized, the legs, pelvis/trunk are the worst. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 18, 2018 Report Share Posted February 18, 2018 A number of years ago I watched a TV dovumentary on Dystonia. A woman on there had terrible muscle spasms all over her body but when she picked up the violin and played they stopped it was quite astonishing . If I remember rightly they mentioned concentration helps the tremors, sorry I can't remember exactly the explanation to this response I hope you can make the connection so you can find some sort of treatment Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted February 19, 2018 Author Report Share Posted February 19, 2018 Yes! Concentration does help. We finally figured out that that was the key when she was walking and not falling. If you interrupted her, down she would go. Also, if people are hovering over her when she falls, she can't get up. You have to leave her be and she can get up on her own. It's a crazy thing! No rhyme or reason for some of it. Thank you for your thoughts!! Quote Link to comment Share on other sites More sharing options...
PJ54 Posted November 7, 2022 Report Share Posted November 7, 2022 On 2/18/2018 at 3:22 AM, DizzyGirls said: Thank you both for your words of wisdom! When he diagnosed her with dystonia, I thought, great! A diagnosis! Then I thought, wait a minute, dystonia is a symptom. What's causing it?? So going on the fact he mentioned dysautonomia, we will start there. I asked her if she wanted to try one of the clonazepam that he prescribed. She said, "nope, I've got energy today and things to do!" It wasn't a lot, but she had some plants that needed tending and was going to help me clean out our back room. Even though she has trouble getting around, she doesn't let it stop her. I don't blame her. I just want to make sure that it doesn't get worse if we aren't treating it. She can manage around the house, it's not always pretty, but when she's bad she can just stay put. Just would like to know what part of the dysautonomia is triggering it and how to make it better. Hers is generalized, the legs, pelvis/trunk are the worst. The doctor never told me dystonia was a symptom. I did find out some other things though. They did another nerve test and found out I have nerve damage on the top of my forearm, carpal tunnel in my hand and also dystonia according to him. Concentration doesn't help mine. I can be cooking, washing dishes, or typing and my hand and arm starts acting up. Also, every so often my leg and foot does the same thing. Can you explain what dysautonomia is? I was trying to find out the difference between the two. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 7, 2022 Report Share Posted November 7, 2022 5 hours ago, PJ54 said: Can you explain what dysautonomia is? Quote Link to comment Share on other sites More sharing options...
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