It’s been a while since I’ve had much to update you on when it comes to my health. It’s been rather quiet until recently.
In May I was having a horrible time with my PoTS. I was blacking out at least once if not twice or three times a day. It was pretty much impossible to do anything. After calling and leaving many messages with the Arrhythmia Nurses at the hospital, they finally contacted me and together we decided to increase my medication.
Thankfully it has helped, and I’ve been able to do things but that month has left me exhausted which has effected everything from my appetite to my ability to pole dance.
In response to my calls of desperation, the nurses wanted to see me in the clinic to discuss what had been going on. The appointment just so happened to be the day after my neurology appointment. This is where it gets interesting and a little bit silly.
According to my neurologist, he is convinced that I “obviously do not have PoTS and that [I] am suffering from dissociation attacks”. After he pointlessly explained to me what PoTS is, (as if i didn’t already know the text book definition) and what the difference is between PoTS and Dissociation, I took a deep breath and asked him ” Well, what now?”. There are a few treatments for dissociation including psychotherapy (which I had last year) as well as Cognative Behavioural Therapy (CBT). I asked if I could try CBT as I had already tried psychotherapy. My understanding is that CBT is a type of counselling where instead of opening up and exploring any issues or traumatic events, you train your brain to respond differently to triggers or similar situations. I have always been skeptical of this diagnosis as when ever I have read up of Dissociation or spoken to other people who know about it, they’ve always been surprised by it and have often said to me “well, that just doesn’t fit with you”.
I thanked my neurologist, a shook his hand and left the hospital feeling relieved, yet apprehensive.
Nurse- “Hi Maria. Just looked over your last tilt table test (TTT) and it clearly shows a orthostatic intolerance. Your heart rate jumped from around the 60’s to 130bpm and as you know, your blood pressure dropped causing you to pass out, meaning that you are suffering from Postural Orthostatic Tachycardia Syndrome (PoTS)”.
Me-…. *awkwardly laughs* “Well, this is interesting…”
Annoyed? A little.
Angry ? maybe?
It’s just typical really. Neurology and Cardiology are struggling to function and work correctly, much like how my brain and heart struggle to get along and cause me to black out.
The positives to all of this is that I am still able to function and live my life without any major complications or restrictions. I am under medical care and there are doctors and nurses who are doing their best to help me which I am forever grateful for.
The negatives however are that I do feel like I am in constant limbo and I often feel like the messenger between the two departments which is exhausting. I struggle as it is to remember things for university and words for basic conversation, never mind having to relay what one department did or didn’t say/do.
Things have calmed down again since my last flare up, I am exhausted all the time but I’d rather be tired yet doinh stuff than sleeping and missing out.
Here’s to staying upright and positive,
Peace and love,