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How did your doctor diagnose dysautonomia?

I am a 24 year old female. I have had multiple surgeries since I was younger (tonsils removed, 2 ovarian cysts removed, gallbladder removed, eye muscle surgery that was supposed to help with migraines). I have had migraines my whole life, and nobody has been able to figure out the cause. I have also always been quite anxious, and I started having panic attacks in college which would mostly come at night where I felt like I wasn’t breathing as I was trying to fall asleep. I have never been given a diagnosis of anxiety from my doctor. She always told me it was “stress” and blew it off.

Long story short, in February of this year was a very scary day. I went to work (I’m a teacher) and I took an excedrin for a migraine that I woke up with. Early on in the day, I began to feel very clammy, my heart was racing, I was nauseous and dizzy and felt like I was going to pass out. I remember seeing black spots in my vision as if I were about to pass out. I remember running to the restroom thinking I was going to throw up but instead I would have severe diarrhea (sorry tmi). I went to the school nurse and she checked my bp which was perfectly normal, but my heart rate was 145. I continued to feel worse and I eventually left work and went straight to the urgent care in my area (I’m not even sure how I was able to drive to get there). The doctor there was very concerned with my heart rate being so high and he sent me straight to the ER to have blood work done. Once I got there, my heart rate was still elevated and they gave me medicine through an IV to help lower it. All of my blood work came back normal. A few hours later, my hr was finally down to a normal level (still at 100 though) and they sent me home with Metoprolol to take until I was able to meet with my doctor.

I wasn’t able to see my doctor until the next week, and I started having severe panic attacks every night where I couldn’t sleep and was scared I was going to stop breathing. I told all of this to my doctor, and she did a bunch of blood work to test different things. My heart rate became elevated while I was there to about 130, so she did an EKG which was normal, but showed that my heart rate was fast. She ordered a scan of my abdomen to check for adrenal tumors and an ultrasound of my heart. No adrenal tumors were found, and my heart scan was sent to a cardiologist.

Fast forward to the cardiologist and he tells me that he’s 100% sure that I have dysautonomia. He tells me about it and how I can get it under control (no caffeine, no chocolate, and some form of daily exercise). I’ve been following that advice for 5 months now.

My doctor also wanted me to see an endocrinologist to rule out anything else. The endocrinologist ordered a saliva test to check cortisol levels, more blood work to check my thyroid, and a 24 hour urine to check for adrenal tumors. All of those tests came back normal.

Here I am today, almost 6 months later, and I have had no relief. I have terrible anxiety pretty much all day and severe panic attacks when I’m feeling out of control. I am still taking metoprolol which is helping with my heart rate, but it doesn’t keep it down all the time. My IBS has flared up significantly within the past few months which could be from not having a gallbladder or from whatever else could be wrong with me. I’m tired all the time and have no energy. When I have panic attacks/ anxiety flare ups, I feel like I’m going to pass out. My hands get tingly and I start feeling fuzzy/seeing black spots if it’s really bad, but I’ve never passed out. I also feel short of breath or like I can’t get a good breath when I get anxious too. My doctor is sending me to a dysautonomia clinic in my area, but I just feel funny about it because nobody has done any sort of test to check specifically for dysautonomia and I also don’t have changes in blood pressure. My doctor thinks I have a mild case of dysautonomia, but I feel terrible all the time and it’s definitely something that nobody else sees when they look at me. My husband sees this in more detail, and he seems to think that a lot of it anxiety-related and that I need to see another doctor which I agree to. I feel like my whole demeanor has changed in the past few years and I don’t know what to do anymore. Even the smallest things get my heart racing these days and I feel like I can’t seem to get the anxious thoughts out of my head.

I apologize for the super long, in-depth story. I would love to hear other stories about being diagnosed, symptoms you have, etc. to see if I’m even being pointed in the right direction because I am exhausted! Thank you so much.
1 Responses
Avatar universal
Why do you think you have anxiety?  Are you scared to think something might really be wrong?
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