Finally a Diagnosis - Neurocardiogenic Syncope

I finally have a diagnosis – neurocardiogenic syncope. Read about what I went through and what the diagnosis means.

Back in May, I shared that I have been experiencing some health problems for some time now. I have been experiencing some of the symptoms on and off for almost 2 decades. Other symptoms are newer. Regardless, in February I got serious about finding out what was going on with my body.

I was hospitalized, went through a battery of neurological tests like an MRI of my brain, an EMG (which was one of the most tortuous things that I have ever experienced), an EEG (it was super fun wearing wires all over my head for 3 days) and more. I was cleared of neurological problems and was even told they’ve never had a patient score as high as I did on their memory test.

After I was cleared by the neurologist, I saw an endocrinologist. I was on a steroid cream for over 20 years to control my eczema, before I knew I could control it with diet, so we wanted to make sure my adrenals weren’t damaged. They also tested my thyroid levels. All good there.

Next it was an ultrasound to make sure I didn’t have fibroids. Again, nothing. The ultrasound tech even said, “I don’t know how to break this to you, but you have a pretty perfect pelvis.” LOL.

As great as all that news was, I still wanted an answer.

And finally, I got in to see a cardiologist that I was referred to so they could evaluate why I had low blood pressure. Honestly, the one doctor I expected not to have any answers for me did. After all, my echocardiogram showed a perfect heart. Who knew you could have a heart issue with a perfect heart? Apparently you can.

On Monday, I was diagnosed with Neurocardiogenic Syncope (NCS; also called Vasovagal Syncope). The best way to describe it is that my heart and brain don’t communicate with each other like they should. This miscommunication causes blood to pool in my legs and my blood pressure to drop significantly, leading to all sorts of lovely symptoms.

Many of the symptoms mimic MS, which is what the neurologist originally thought I had, but fortunately Neurocardiogenic Syncope isn’t fatal or progressive. While it isn’t life threatening, it is life disrupting. And there isn’t a cure.

The cardiologist referred to it as a disorder of healthy, fit people. He said they very rarely see it in someone with poor health. So at least that’s good news, right? I have to laugh about it so I don’t cry or trigger an anxiety attack.

Because there is no cure, all I can focus on is how to control the symptoms.

I have to be very conscious about keeping very well hydrated. I have always gotten dehydrated very easily, and neurocardiogenic syncope explains that. People with neurocardiogenic syncope have trouble retaining the fluids from what they drink, so adding electrolytes to my drinks is important. I found a great Food Babe post on natural sources of electrolytes because I’d prefer to avoid the doctor’s suggestions of Gatorade, Pedialyte and Crystal Light.

I also need to consume more quality salt to help keep my blood pressure up, and caffeine can help bring your blood pressure up as well.

There is a whole list of things I should be avoiding, and it’s amazing that I already know some of these things are triggers for me (like heat). It makes me wonder what else I will need to avoid.

The only other recommendation the doctor had for me was to wear compression hose to help return the blood from my legs to my heart and brain. While the thought of doing that makes me feel a bit like an old lady, I will give it a try once cooler weather returns and I can hide them under my jeans.

So, while there are days that I feel frustrated because I can’t do the things I want to do, I am keeping my head up and moving forward. I just have to give myself grace and be kind to myself. When I’m feeling overly tired, I need to allow myself time to rest and not feel bad about it. On my dizzier days, I need to really pay attention to what may be off.

My lifestyle may be changing a bit, but at least I know that I’m not going anywhere. My worst fears won’t be realized. I will get to see my kids grow up and be there for them each step of the way. For that, I’m grateful.

So, from time to time, you’ll see me share updates about neurocardiogenic syncope and how I’m doing with it. If you have neurocardiogenic syncope or something similar, will you share your story below so we connect?