Dysautonomia was my first diagnosis in the fall of 2013 and it happened by accident. I was on a medication for depression at the time which required me to have regular EKGs. My EKG showed sinus tachycardia around 121bpm, and the health center at my school asked me to see a cardiologist.
The cardiologist did another EKG with similar results. He hypothasized that I had some form of dysautonomia. We did a poor mans tilt table and he tenatively diagnosed POTS and put me on metoprolol.
I had symptoms of dysautonomia (pre-syncope, fatigue, racing heart) before this but i thought they were all normal/anxiety. Looking back I know I had symptoms for at least a year before my diagnosis.
After around 6 months it was clear that the metoprolol was not working for me and they took me off it. By this time I had moved to NY and was having other health problems. My new specialist, who was a neurologist, switched me to mestinon.
I was on that for a while with no improvement, and we switched to florinef which helped.
I then moved to philadelphia for grad school and began to see a new cardiologist. Also during that time my GI issues worsened and i was not able to tolerate anything. Due to this my symptoms worsened so we upped my florinef and began saline infusions. These infusions were amazing because they not only improved my dysautonomia symptoms but also provided hydration when i could keep nothing down. We put in a PICC line and i did my infusions myself at home which was so convenient.
As my GI issues worsened so did my dysautonomia. We added midodrene.
I got a feeding tube in January. I’m thankful to say my dysautonomia has been stable since then.
I started ivig in July for my Chronic Demyelinating Inflammatory Polyneuropathy but i dont think its effected my dysautonomia.
It took 3 years but i’m so glad i found a treatment plan that works for me.
If youre still struggling, please keep playing around with your treatment and dont stop until you figure out what works for you. Keep sharing your story.
Dysautonomia affects 70 million people worldwide. We all struggle differently. Some of us faint, some have seizures, and some show no outward symptoms. Some people have dysautonomia secondary to something else (like me) and some have it as a primary condition.
I first heard of it when i was around 11 because a friend of mine from camp had it. But i wasnt really sure what it was. little did i know that 9 years later i would have it too.
I’m thankful to my dysautonomia community and my doctors and i know that together we can fight back against this debilitating condition.