Hello all!
I am new to this group so this is my first comment.
I have a 31 year old daughter who was diagnosed with Dysautonomia about 10 years ago. She has been on Nadolol this whole time. Dr has tried her on different supplements as well. She has gone for months without bad episodes but when they flare up, boy do they flare up. Over the course of the last few years, she has been unable to hold down a job because of this. Most recently, she lost a job after having a bad flare up at work, we had just moved back home and she had just started a new job and was still in the first couple of weeks of training and then after this episode, missed a week or 2 of work. I think the whole thing freaked them out and they saw her as a liability (not the first job to do that to her), she brought Dr's notes and everything, they didn't care, they let her go. This was a little over a year ago and no job since. I know how debilitating Dysautonomia can be but right now I'm seriously worried about my daughter. She tells me she is applying for jobs (work from home jobs). She has insomnia so she is awake all night and sleeps all day. This was a young woman who was educated, ambitious, had plans, worked hard, an extraordinary dancer, smart, talented, now it's a struggle to get out of bed and try to function, to have a normal life. I would love to hear from other caregivers who are caring for a Dysautonomia patient or even patients themselves. I know that I am not the only one out here going through this. I just need to hear others experiences with this. Only people who are experiencing this understand. When you try to talk to people about this and they haven't experienced it, they have no idea. "Oh, she's being lazy, she needs to get a job, she needs to help you, financially, around the house etc...." I try explaining and they just don't get it. I need to be able to have conversations with people who do understand.
