Living with a dysautonomia patient.

[DYSAUTONOMIAMOM]

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.

 

 

 

[MomtoGiuliana]

Welcome to the forum.  

Being a caregiver to someone with a chronic condition can be physically and mentally exhausting.  

We don't have many caregivers very active on the forum but there are a few who come by from time to time.

Yes many patients experience the lack of understanding you are describing.  That is an added burden for them and also for you the caregiver.

We do have this resource that may be helpful if you are trying to help someone understand.

https://www.dinet.org/content/information-resources/pots/understanding-dysautonomia-a-guide-for-family-friends-r153/

I hope your daughter is able to find treatment that can help her to feel better and more stable.  Many of us here experience flare ups like you are describing.

[MTRJ75]

The best advice I could give is if she's considering disability, try to do it while you have enough work credits within the last decade. I waited too long and let some work credits lapse and while I was eventually approved for disability, I'm getting much less than if I had done so five years earlier. 

And you're right, most people without the experience have no idea. She has no idea how lucky she is to have at least you in her corner. I still fight with family member on a daily basis about the things I'm not able to do. 

[Sarah Tee]

That is a very difficult situation for you both.

I first started having symptoms when I was 29, but they were mild to begin with, so I was able to keep working for quite a while. But over the years my symptoms gradually got worse, and I am now unable to work or do much of anything. My father is my main support person, taking me to appointments and helping me deal with paperwork and other things that brain fog makes hard.

Is your daughter happy with her doctor? Although research into dysautonomia doesn't move very fast due to the lack of funding, there have been a few developments in medications and diagnosis in the last few years. Maybe it is time for a review of her situation or a second opinion if her doctor has perhaps not been keeping up with advances.

Does she have the kind of symptoms that IV saline might help when she goes into a flare?

[Birdlady]

19 hours ago, MTRJ75 said:

The best advice I could give is if she's considering disability, try to do it while you have enough work credits within the last decade. I waited too long and let some work credits lapse and while I was eventually approved for disability, I'm getting much less than if I had done so five years earlier. 

And you're right, most people without the experience have no idea. She has no idea how lucky she is to have at least you in her corner. I still fight with family member on a daily basis about the things I'm not able to do. 

MTRJ75's advice is spot on.

Your daughter may want to call the SSA to see if she has enough work credits. You also want to find out her "Date Last Insured". Not sure if this info is available online or not. This way you know what you are up against. If the date has already lapsed, then she will only be able to get SSI. If the date is rapidly approaching, then you want to seriously consider applying for disability if she cannot find a job that works around her limitations.

I also waited years to apply for disability and once you lose work credit, instead of SSDI, you get put on SSI which is currently $841 a month. It goes up with cost of living increases but it's never enough to survive on. It's a strict system where you cannot get any help from people without money being taken out of your monthly check. There's tons of rules and regulations. 

I really feel for you and your daughter. She's so blessed to have you as a mom caring for her and listening and understanding that these are real limitations and not her just 'being lazy' like soo many people believe.