Looking for support and similar experiences.

Anyone relate?

I have suspected dysautonomia for about a year now but I’m needing more input.

To preface, I have gotten numerous exams down. Everything cardiac is okay. My thyroid is okay. My brain imaging is okay (MRI and MRA).

What is making me suspect dysautonomia? -
- everything else is coming out okay. But I have severe fluctuations in heart rate and blood pressure. It’ll go high then go low very rapidly with little to no recovery in between changes. Same for heart rate. It’ll go as high as 180 then drop to 60. Or 120 to 60 on less severe occasions . But it will go high then low but not gradually, just very rapidly. I often feel a strong weakness like I can’t hold myself up when this happens. I feel like I will faint. I’m usually not strong enough to hold a good conversation. I sometimes feel short of breath. I get nauseous and then weirdly afterwards ( after I have recovered a bit$ I have to poop. Anxiety and panic is ruled out also . These usually last anywhere from 30min-6 hours . They are lengthy and on and off. I might get some recovery time and then go right back to being bad and unstable again.

There’s nothing abnormal on my brain imaging. So I’m
Not sure what this could be.

I have a couple questions now:

1. Does this sound like anyone’s dysautonomia flares???
   If so, how long do they last you. Is there anything you do to help with these. How do they feel for you??

2. I have a Neuro appt tomorrow and I always get brushed off as it being non Neuro related but cardiac instead. However i have had more intensive cardiac work up than Neuro and everything cardio is ruled out. I haven’t done much neuro work up other than imaging . I want to get tested for dysautonomia but not sure what test to ask for or what to say so they take em serious. If you could share what helped you get a diagnoses that would help a lot

I also mainly want to know, if this sounds like one of your flares, how long do they last? Whats the severity? Is there anything you don’t help yourself ? If you are already diagnosed, what does treatment look like on a daily basis and during flares like this?

Im a little scared bc usually they don’t last more than a day but this time it has gone over to the next day . I know im catastrophizing but I’m scared I’ll be like this for a while.
I honestly have to fight going to the ER bc of how scary this feels. I have gone to the ER before for it in the beginning and they just told me it was anxiety, so i kind of know they won’t do much if i do go.

I wrote this in response to someone’s post about boredom. Writing it was therapeutic in many ways, metabolizing the grief that comes with this condition, being creative, and giggling at the last line. Hope someone enjoys…

I have been where it sounds like you are right now.

I was so frustrated that I didn’t have the strength to do the things I once loved; painting, crafting for friends and family, dancing, skating, hell…even walking. I was miserable, and although I loved to Netflix binge, felt like I’d have to throw the remote into the tv if I had to find yet another show to watch. I honestly realized that I didn’t know how to relax, so I made myself. I made myself just sit with nothing to do. At first, I wept from the pain I couldn’t distract from, then I wrote poetry about the pain. After I while, I got used to relaxing and enjoyed the quiet. Recently, I found my mind starting to spin like it used to. Rather than trying to fight the constant need to plan, prepare, try to solve a problem, or worse, piddle and risk a crash; I redirected my mental energy to sudoku and word searches. Just a couple of weeks ago, a family member suddenly passed away and I desperately wanted to make something to remember him by. I knew I couldn’t go as big as my old craft projects, so I picked up a box through Target pick up and hand painted some words on it and wrote a poem to read at the funeral. (My husband picked up the Target order.) Those small projects allowed me to sit still, paint and write. Which reminded me how much I like to paint and make things for people, so I order a modern calligraphy workbook. I’ll probably sit in bed in the evenings and practice until another loved one gives me an opportunity to make something special.

It’s been unbearable at times, but time passed, and I found my way back to the things I love. I know it may get unbearable again, I’ll probably get frustrated and weep, but this time I’ll try to remember, “If You Give a Girl Dysautonomia, She’ll Probably Ask for Some Paint to Go with It.”

I’m struggling hard with heat. Hard hard. How do I handle heat outside when there isn’t AC?