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Dysautonomia/Syncope

Brain & Nervous System | Last Active: Feb 12, 2019 | Replies (18)

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@colleenyoung

Thank you for digging up this discussion @widman and offering to share your experiences with dysautonomia. You may also be interested in connecting with @neeci and @mojoearle in this discussion "Diagnosed with dysautonomia. Looking for treatment options." http://mayocl.in/2bKzAwa

Welcome to the community.

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Replies to "Thank you for digging up this discussion @widman and offering to share your experiences with dysautonomia...."

You are welcome! Glad to connect with people. Our journey has been going on many years now, and thankfully, we have made huge progress, so I thought I would share with @haylie'smom, because things sounded so familiar. I have hundreds of answers for my family now that I only had frustrations and questions about four years ago. It has been a harrowing time for us, but we are in a much better place now. Do you know how I can connect with @hayle'smom? It's been over four years since she posted, so I would be interested in finding out if she has any answers, too! Maybe we can put our information/heads together. (By the way, I stumbled upon this discussion by googling "dysautonomia and blood sugar swings.")

It is possible that Haylie's mom has turned off receiving notifications from Connect 🙁 But your message will definitely help other members here on Connect, and other people googling dysautonomia as you did 🙂

I know these posts were 2 yrs ago but my story sounds so much like theirs. Curious how they are doing now after they possibly having a pacemaker for a few yrs already?
My daughter started fainting when she was 13 yrs old. Dr did tilt table test at the time. Saw that her heart did stop. She had a 5 second pause. She also always had extreme low blood pressure. They put her on Atenolol and said she would grow out of these fainting episodes ( which only happened with anxiety or pain).
Ex. Giving speech at school or witnessing a friend getting injured or getting her ears pierced. From 13 to 17yrs old she did well on the Atenolol.
18-24yrs old she began fainting again & had extreme migraines which prevented her from finishing college. Multiple drs could not help her. They blamed her for being dehydrated & poor eating habits. We saw cardiologists& nuerologists and lots of medications that never helped.
She became extremely thin, pale, weak, always tired. Always having pain from migraines. GI problems started occurring. She’s lived this way for roughly 10 yrs. Just this yr she finally got the correct diagnosis with Dysautonomia & they want her to get a pacemaker because she did another tilt able test and her pause was 30 seconds. Yikes! She is being referred to Mayo Clinic.
She is now 28 yrs old. She is seeing an automic specialist who has also been a big help.
This all came about the last few months. So we are first learning about Dysautonomia now. We had never heard of it before nor POTS neither.
Anyone’s stories or information are greatly needed and appreciated! A worried mom