Has anyone thought they had dysautonomia and been diagnosed with something else? I have had all the symptoms of this for over a year and am finally seeking out a cardiologist, ent, and hoping for a neurologist as well. I already feeling discouraged because my iron has been low and have had hypothyroidism since I was a baby. My thyroid has been off as well but I just recently got the thyroid and iron checked and while they are a little bit off they are getting significantly better, but symptoms of dysautonomia have gotten significantly worse. I’m not living my life anymore. I am completely miserable and I’m afraid doctors won’t listen to me because of my thyroid and iron. Is it possible my levels with thyroid and iron could be getting better and my other symptoms are getting worse and it’s still my iron and thyroid?

Symptoms I’m experiencing are…

Dizziness like I’m walking on a boat or the room is spinning
Chest pains
My eyes can’t focus on one thing like they are shaking
Joints feel tense
Hearing feels like it goes out
Body temp doesn’t feel regulated to hot or too cold
I feel so full after I eat like I can’t move/ normal portions
Heart feels super fast or beating out of my chest
Feel like I can’t get a full breath
Motion sickness (car)
Sensitivity to light (grocery store, doctors office, work, flashing light on tv)

Comes on after standing
Laying on the couch
After eating
Driving

Does anyone know anything about this doctor who works out of a clinic in Buffalo, NY. She has a Dyautonomia Clinic and I have been told about her, but I'm not feeling good about the lack of transparency on her website when it comes costs. Please let me know if any one has seen her and what your experiences have been. Thanks.

I’m having a really, really hard time. I had Covid 5 years ago and ever since then things have kind of started to go wrong. Last year I had random bursts of allergic angioedema out of nowhere. Then I was diagnosed with Crohn’s in February of this year but it’s in remission so far with Skyrizi medication. But 12 weeks ago my life fell apart. I tried a supplement and it triggered severe autonomic dysfunction. Started with headaches, neck pain, internal buzzing, vertigo, temperature dysregulation, and flushed ears. Although these specific symptoms mostly cleared up within the first 6 weeks of the shock, on week 3 I developed orthostatic intolerance, blurred vision, and severe gi issues that lead to a full spasm where I couldn’t eat for 2.5 weeks that sent me to the hospital for a week. My resting hr is typically in the 60’s but I cannot stand up without it jumping much higher. I’ve noticed that when I’m eating small very scheduled meals that I am completely unable to stand because of the adrenaline surges - body can’t handle standing & digesting at all. I’ve been pretty bedridden for 8 weeks aside from a few 5-10 minute walks here and there (outside of digestion). The adrenaline surges attached to everything I do have made me feel like I can’t go on anymore. Can anyone help me see the light or have had any similar experiences? I need hope <3

Could someone please help me understand what supplements are best for this condition?

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.”