PTSD and SCAD

Got to love acronyms.  PTSD.  SCAD.  Only eight letters between them, yet they have both been life altering for me.  Some days they feel like chains weighing me down.

According to an article in the Journal of the American Heart Association, survivors of SCAD have significant rates of posttraumatic stress disorder (PTSD), depression, and anxiety, which are associated with lower quality of life, specifically among those with lower resiliency.

PTSD is usually thought of as a mental health issue impacting combat veterans and first responders, but it can be triggered by an acute health event, such as spontaneous coronary artery dissection (SCAD). (2) In fact it can be triggered by any sort of major trauma such as childhood abuse, serious accidents, spousal abuse, sexual assault, war, torture, traumatic work events.  And those who have had trouble with anxiety and depression in the past seem to be at greater risk. (3)

I knew about this even before I experienced SCAD in 2018. Like many women my age, I had already racked up my share of traumatic life events, and had struggled off and on with anxiety and depression, and had done my share of reading to try and help myself.

When I regained consciousness in the ICU of the city hospital and they explained what had happened, it wasn't long before I was concerned about my mental health.  I was very weak when I first woke up and had too much time to think.  I found myself spending a lot of time thinking about another very traumatic event that happened when I was 13 years old.  

My paternal grandparents lived in the basement apartment of our family home.  On September 23, 1976, my grandfather was found unresponsive in bed by my grandmother.  I ended up trying to do CPR on him until the ambulance arrived.  He was still unresponsive when he was taken away and declared dead shortly thereafter.  He had died from congestive heart failure during the night.

So there I was, in ICU in early September 2018, thinking back to how he died, how I was unable to save him, and everything came rushing back like it hadn't in years.  My ICU nurse was fantastic.  She listened to my concerns and my requests for antidepressants. I explained I had a long history of nightmares and given my current situation and flashbacks to 1976, it was agreed that it would be good to be proactive.

I've thought a lot about my grandfather since that day in the ICU.  There was no counselling for me at the time, of course.  Looking back, I realize I struggled with the trauma and the accompanying guilt for a long time on my own.  Now, I had a front seat view on what it was like to live with congestive heart failure as my SCAD left me with a badly damaged heart. In the early days, I had to sleep sitting nearly upright as anything less made me feel like I was suffocating.  I remembered that Pop slept on only one pillow the night he passed away and I marvelled at how that was even possible.

Of course, most lives have their share of trauma, and mine was no different.  But it wasn't until my SCAD that I gave myself permission to even talk about the possibility of PTSD.  In hindsight, I realize, I struggled at several points throughout my life.  And even when I sought counselling, I rarely talked about anything other than the current events of my life at the time, as if any past trauma had miraculously resolved on its own.  I now realize that is not the case.

Nothing like a health crisis and plenty of time on one's hand convalescing to change one's perspective.  And this time, the PTSD symptoms have been more profound and durable.

I've had flashbacks this time that have been extremely dramatic and upsetting. In the past, I'd have dreams about a traumatic event. This time, I was awake when they hit.  And what horrible experiences they were!  

I've managed to avoid most nightmares thanks to a nightly dose of Ativan; however, any attempts to wean myself off that medication have been disastrous.  Even cutting it back by 50% resulted in vicious nightmares where I woke up screaming or tried to claw the walls. Thankfully most nights are calm, but there are times I just do not sleep.

Sometimes, something triggers me and I become hypervigilant. I may have been sleepy one minute, the next I'm so alert it is insane.  I hear, smell and feel everything.  It takes some serious self-talk and plenty of word games on my phone to maintain my calm.  Those nights I usually don't sleep until dawn.

And this hypervigilance has endured.  It doesn't happen every night like it did when I first came home from the hospital.  But it happens often enough to remind me that while I may feel physically and emotionally stronger, I'm still a shadow of my former self.

I can also be triggered and spiral downward into extreme sadness or anxiety.  The last time it happened was mid December.  I'd had a routine cortisone shot in my right knee (which is in dire need of joint replacement).  The shot was more uncomfortable than usual as the joint space is so small now.  That evening, I couldn't sleep. And the following day, I started spiralling down.  The sadness was overwhelming. It washed over me in waves. It took a week before it subsided.

Despite the ongoing issues associated with PTSD, my day-to-day quality of life is pretty good.  I'm physically more active now than I was in 2019. I no longer need my rollator on outings. I follow a low salt diet. I can participate around my home more than before.  I no longer need to nap every afternoon.  And I can enjoy a 2 km walk with my partner and our dog. I am rediscovering old hobbies and trying some new ones.

I realized over the holidays that the main reason I do as well as I do is I have the luxury of adapting my expectations of myself.  I do not have to worry about the roof over my head.  My family is supportive and understanding.  I can plan to do as little or as much as I think I can handle each day and they are okay with that.  If I can't sleep and need to stay up, my partner kisses me goodnight, tells me to wake her if I need her, and then she keeps the house quiet when I try to catch some sleep after sunrise.   

I can't imagine having to go back to a job while coping with PTSD.  Some days I can handle disruption and upset reasonably well.  Other days I absolutely can not and melt down almost immediately.  If I couldn't insulate myself from stress like I do, I don't know how I would cope. I can literally hide from the world when I feel I need to do so.

Interestingly, my physical health has gotten far more attention from my health care team than my mental health.  I think that's partly my fault as I'm still hesitant to talk much about it.  I did tell the Congestive Heart Clinic staff about my flashbacks as I thought that was relevant and I have mentioned my sleep disruption issues.  But I guess they figure I'm managing pretty well all things considered.

I'm beginning to realize that PTSD is a lot like congestive heart failure (CHF).  You can do things to help mitigate your symptoms, like keeping stress levels low like I keep my salt intake low.  I can take medications to help. I can implement self-care routines to help.  But it is something you have to learn to live with.  Neither is going anywhere anytime soon.

So, it has finally sunk in that PTSD and CHF will be with me for the foreseeable future. Reading the research may help you know what you are facing, but it still takes time for the depth of your new reality to be revealed.  Thankfully, I am blessed and am not facing this alone.

If you have not talked to your health care provider about depression, anxiety or PTSD following your SCAD, please consider doing so.