Updates, updates, updates! Last we spoke, I’d begun experiencing a symptom flare that resulted in fainting. This meant more testing. The testing confirmed what we have long suspected: my autonomic nervous system is broken.
Thankfully, I was able to make an appointment to see my specialist much sooner than expected. So yesterday, with a page full of scribbled down questions, my mom, husband, and I made our way to UTMC to see Dr. Grubb, a leading specialist in autonomic dysfunction.
What is the full diagnosis?
The basic diagnosis is Dysautonomia [dis-aw-tuh–noh-mee-uh], a disorder of the autonomic nervous system. Since the autonomic nervous system controls so many aspects of your body, it can malfunction in several different ways. This is why Dysautonomia is a “blanket-term” for a number of specific conditions related to autonomic dysfunction. So what is my specific condition? I fall into the spectrum of both POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (Neurocardiogenic Syncope). These two often coexist and are treated identically.
This short video on POTS gives a fantastic explanation of my symptoms and what is causing them:
What is the treatment plan?
Thanks to the knowledge of my primary doctor, I am already on one of the medications commonly used for treatment (Fluoxetine). In addition, I will be starting a low dose of Fludrocortisone. It is possible I could be on these medications for the rest of my life, but there have been success stories of others being able to be weaned off of them over time.
It’s also important that I maintain a steady fluid and sodium intake, as well as find exercises that do not exacerbate my symptoms.
What will the future look like?
While there is no cure, that doesn’t mean that I will feel as badly as I do right now for the rest of my life. On the contrary, there is definite hope of improvement to the point of leading a very normal life. This condition will always be something I have to be mindful of and I will likely always be managing it to some degree, but with treatment that management will get much easier.
We still don’t know exactly how long it will take for improvement to begin or how long it could be before I see a drastic enough improvement to consider things like applying for a “real world” job or other exciting things, but the hope of that alone is a definite answer to prayer.
What is going through your mind?
For the first time in 6 years, I feel like we have a concrete understanding of what I am facing and what my prognosis is. This is an enormous blessing. In an Instagram post yesterday, I briefly detailed what these years of searching for answers have been like and the many emotions involved.
Today I see a world renowned specialist. I’ve written down an entire page of questions. I’m nervous. This is what six years of searching for answers looks like. A girl afraid to hope, but filled with anticipation. I’ve been thinking a lot about the phenomenon that occurs after years of not knowing. Of being told it’s all in my head. Of doctors not taking me seriously. You can’t live through being continually met with doubt without it affecting your outlook on life. Even as I prepare for this appointment, I’m noticing it. I never wear makeup to my appointments, because I want to be taken seriously when I say that I’m sick. And, just maybe, if they can see the dark circles and the pale skin they might be more inclined to believe the truth. This is what living with an invisible illness is like. We don’t long for people to recognize that we’re really sick because we want the attention. We long for it because we want understanding. We are not immune to beating ourselves up over our limitations. We are not immune to feeling weak and useless. And when others say our illness is nothing, that we are doing this to ourselves, or that we could do better, it only adds. I have battled severe depression due to wondering if somehow this was something I was doing to myself…. if maybe it was all in my head, like I’d been told, and everything I felt wasn’t real. This causes emotional trauma. And it leaves a lasting scar. So as I approach today with anticipation, I can’t help but speak out on this for all those who are searching high and low for these kind of answers. This battle is real. #dysautonomia #ncs #neurocardiogenicsyncope #chronicfatigue #chronicillness #spoonie #makeupless #hope #answers #understanding #depression #mentalhealth
To put it simply, I’m grateful. Grateful to the people who have believed and supported me. Grateful to the doctors who have taken me seriously and provided answers where there were endless question marks. And most of all, grateful to God for all that He has done; for the unwavering hope that I have found in Him whether answers were discovered or not. He has used every stage of this journey thus far to grow me. I’m definitely not the person I was before I got sick and I’m okay with that. Though I would never wish to relive most of these last six years, I can honestly say I’m grateful for them. I’ve come to accept that God, in His infinite wisdom, has allowed all of this to happen. God is good and I have been blessed beyond what I deserve.