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Hi, I was diagnosed with CIDP in July of 2020. Started IVIG in August. My leg weakness is better as well as my balance and gait. I keep having episodes of my pulse falling into the mid to low 40s. I’ve had every kind of cardiac work up and my heart is fine. When it gets that low I just crash. My neurologist says it’s part of the autonomic dysfunction and it will eventually improve. Anyone else experience this or anything similar? Just wondering if any additional or other treatment would be helpful?
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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
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Thank you Mike! After being sick without a diagnosis for 12 years the way I finally got to treatment was never settling for what a doctor said if I felt it wasn’t quite right and always pushing the envelope. I guess that won’t work anymore and I just need to be patient with healing. Again, thank you.
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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.
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Thanks Sandra, I’m still up and down but usually low BP and low pulse. They put me on Wellbutrin as it helps some with energy and a side effect is high BP. Not working for me. Did your doctor prescribe anything for the low BP? Thanks!
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