Syncope

[lopiper]

I have hypocomplementemic Urticarial Vasculitis. I recently have had episodes of syncope and uncontrollable hypertension. I can’t stand up for very long or walk very far without extreme shortness of breath and getting dizzy. The doctors are having a hard time figuring this out. Has anyone else experienced these symptoms?

[michichgo]

Hi Lopoper.

I was diagnosed with mpa in 2013 & my only issue, at diagnosis, was near kidney failure. Since that time, my kidney function has improved. Sadly, then other systemic issues began to appear. I'll touch on those items similar to yours.

In 2015, I was diagnosed with tachycardia, high heart rate. I keep it controlled with meds but still struggle when I exert myself, which honestly doesn't take much! The following year came shortness of breath and syncope. I recognize the funny feeling precursor, so I know when I need to stop all activity. But once or twice a month, I'll go out like a light!

I've worn an external heart monitor but it only showed an increased heart rate at the time of a syncope episode. The monitor showed no other issues of significance & my cardiologist feels both the tachycardia and syncope issues are vasculitis related.

The tachycardia is treated with the med Bystolic. The syncope by simply lying down. Which can be problematic, say in a grocery store.

Best wishes,

Michelle

[lopiper in reply to michichgo]

Thank you so much for replying. I have all of those symptoms you spoke about. I too wore a monitor for 30 days that showed tachycardia and no other signs. Like you, I’m listening to my body and I sit or lie down when I feel lightheaded and shortness of breath.I don’t go anywhere alone now. I seem to have good and bad days. Needless to say, I had to give up my job as a nurse

[michichgo in reply to lopiper]

I had to stop working as well. Once fatigue sets in, pain follows and I simply deteriorate. I describe it as similar to having the flu. Everything hurts and fatigue is overwhelming.

I've chosen to attempt the following exercise regimen: 5 minutes in the morning, 5 in the evening. Sounds pitiful but it's the best I can manage! And somedays I never leave bed. Such is life with vasculitis. It's not for lightweights!

[lopiper in reply to michichgo]

Your life sounds just like mine. Hang in there and thank you for validating that these symptoms are real. A couple of doctors that it was all in my head

[michichgo in reply to lopiper]

Doctors seem to say that when they are unable to make a diagnosis.

Be well.