Autonomic dysfunction despite IVIG

Sorry to hear about your dysautonomia. I also have autonomic dysfunction. My symptoms were initially tachycardia with minimal exertion, lightheadedness, fatigue. At one point my pulse would run in the 140’s just standing while brushing my teeth. Occasionally my pulse and blood pressure will run low, and I experience blurred vision. My autonomic symptoms are always worse in the morning, but also fluctuate during the day. My neurologist told me the same thing that it would eventually improve. It was hard to believe as I felt so crummy and at times I still do. Be patient as it does get better. It took me months and I am still on IG. Now the sub-q variety, and also take prednisone 10mg daily. I found that compressive stockings, salt, and fluids all helped. I use drip drip which is an electrolyte powder that I put in my water. My neurologist also prescribed salt tablets and midodrine. I have been slowly using less and less of the midodrine as time has gone by. Light exercise has helped. I cant do what I use to do, but try to do something daily. Inch by inch it has slowly improved for me. Hang in there as it can be frustrating

My blood pressure was perfectly normal until I developed CIDP. Then it became erratic and required multiple medications. I spent a night in an ER because it was in the stroke range, over 200 systolic, and wouldn’t go down. Then it started dropping as low as 80/49 during infusions. My cardiologist needed weeks to get it stable. It’s all right now, but I have to keep a close watch on it. All the doctors involved agree that CIDP is the cause of the instability.