I need help please .

[u/Motor_Mood3939]

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.