Hyperarousal and Sensory Overload: Do Not Mix

"I feel like life is a bunch of jump ropes all going at once, and I have to try to jump in without getting hit by any of them..."

I just found that quote in a journal I started years ago in an attempt to process the mysterious changes that were taking place in how I experienced the world, long before I recognized the connection between these symptoms and the trauma that brought them. At the time, I was noticing more and more that my mind seemed overactive and I felt overwhelmed by activities that were previously mundane, like shopping. Now I know that I was suffering from hypervigilance.

Hypervigilance belongs to the symptom cluster of hyperarousal, which also includes heightened startle response, difficulty concentrating, irritability, risky behavior, and insomnia. Last night the first three threatened to ruin my evening. (I was already tired and feeling like I was done for the day at 4:00 p.m., but I didn't want to cancel my dinner plans because I am so tired of CPTSD stealing my life. In hindsight, I probably should have because I think the tiredness made me more susceptible to being on edge.)

I was at a loud, crowded restaurant: people bustling around, lots of noise, candles flickering. My brain politely informed me that I was in a safe and enjoyable place, but my body wasn't having it. The environment felt hostile, like everything was conspiring to crush me into the wall and set me on fire and the whole place was yelling at me. My friend ordered for us both because I couldn't focus enough to make sense of the words on the menu. I only began to feel calmer when I tasted a very gingery drink. It seems like that should have overloaded my senses even more, but it actually helped me to focus on that one sensation and block out the others. (The whiskey probably didn't hurt either.)

I'm not afraid of roller coasters, but I absolutely hate them because the one time I went on one, I felt like I was in hell. My body was being thrown around outside of my control and my brain couldn't possibly process everything I was sensing fast enough to be able to anticipate what was coming next or perceive potential threats, and -- worst of all -- there was nothing I could do to stop it. I coped by closing my eyes and trying to imagine I was somewhere else and waited for it to be over. When your body is constantly terrified, you don't need to seek thrills.

There are some high-stimuli situations in which I can be just fine or even have a really good time. For example, I've been to live punk rock and heavy metal shows that were fun, and as a teenager I found moshing to actually be therapeutic. This kind of atmosphere would appear to be much more volatile than a restaurant or shopping mall, but I think what makes stimuli stressful is 1) lack of agency over it and 2) multitasking. A crowded grocery store will stress me out because I'm attempting to simultaneously select my items while avoiding small children with my cart, whereas at a concert with much more intense sights and sounds and movement, I can just enjoy it because that's all I went there for.

What We Call It Matters

My first counselor had probably twenty years of experience. She ignored the trauma and said I had a mild depression. Her philosophy was that we could spend hours analyzing the past, but it would be a better use of time to just focus on the positive and move forward. She recommended that I plan some fun activities to look forward to. At the time I didn't know anything about different therapies so I went along with it, but I felt like I was at the doctor's with a festering wound and was being told to diet and exercise. This approach blows my mind now. It may be appropriate for someone who has a mild depression with no cause, but to completely disregard trauma is uninformed. There is no moving forward when the past has chained itself to you. Many psychotherapy patients have been traumatized, so it seems to me that all mental health professionals should be highly trained in recognizing and treating trauma survivors.

My second counselor was a graduate student under the supervision of my previous counselor. She was obviously trying out a variety of techniques she was learning and not all of them worked for me, but overall I made much more progress with her despite her inexperience -- or maybe because of her inexperience, she was more open to trying different things.

My next counselor, also a grad student, exhorted me to have more faith and eat more avocados and get prescription sleeping pills. Only the last advice was helpful.

My next therapist lasted three sessions: the first one was introductory, in the second one she told me about some approach that sounded like pseudo-science, and in the third we watched Dr. Phil. I walked out at Dr. Phil and gave up on therapy until my doctor recommended another practitioner and encouraged me to try again.

My current therapist, Z, is the best so far. But if I use the term Complex PTSD, everyone who works at these places acts as if they didn't hear the first word. If it's not approved by the American Psychiatric Association's inclusion in the DSM, it doesn't exist. (I understand why they can't officially diagnose it, but I feel like they would indulge me more if I walked in there and said I was God or a squirrel! It's so bizarre.) But Z is the one who recommended that I read the book Trauma and Recovery by Judith Herman, so I believe she agrees with Herman's view.

Herman is the one who first proposed Complex Post-Traumatic Stress Disorder as a freestanding diagnosis. I thought this must be a new book, because I never even heard of CPTSD until last year. I checked the copyright date: 1992!? Are you kidding me? Why is this still not legitimized?! Herman sheds some light on why it's so difficult to accurately revise the DSM: Members of the APA from a vantage point of empowerment don't see the need for a diagnosis that necessarily applies to the disempowered. When women presented rational arguments, "The men of the psychiatric establishment persisted in their bland denial. They admitted freely that they were ignorant of the extensive literature of the past decade on psychological trauma, but they did not see why it should concern them" (p. 118). Basically, empowered people assume psychological maladies cause traumatization rather than the other way around, which puts the blame on the victim instead of the perpetrator. (Of course, men can be victims too. Herman explains it much better than I do. It's an excellent book. I would read it for her crisp writing alone.)

Maybe if CPTSD was officially recognized, I would have gotten help sooner. Not to mention the added stress involved when your actual problem supposedly doesn't exist. Gaslighting is what contributed to CPTSD for some of us in the first place, so the APA needs to stop rewriting our reality.

Hijacked

Over the weekend I experienced the worst flashback I've had in months.

I had arrived at a volunteer event in a cheerful mood, but I was soon accosted by five different triggers in quick succession. It was overpowering. The best way I can describe a flashback is that it feels like I'm being hijacked, like some idiot has taken over my body and I'm just along for the ride and don't know what's going to happen next.... but the hijacker is invisible so I don't understand what's going on; all I know is that I've inexplicably lost control of the aircraft and we're going down.

According to Pete Walker in Complex PTSD: From Surviving to Thriving, CPTSD flashbacks differ from PTSD flashbacks in that they can be purely emotional, without any sensory phenomena. I was surprised to observe myself rapidly becoming unduly frustrated and irritable, to the extent that the surly comments that normally get filtered by the brain were instead fleeing out of my mouth. Not exactly how you want to present at a church Christmas volunteering event. At least no one got beaten with a roll of wrapping paper.

So why was my brain's filter missing in action? I read recently in The Body Keeps the Score by Bessel von der Kolk that during flashbacks, the right (intuitive) side of the brain is activated while the left (analytical) side of the brain is deactivated. That's why I don't realize I'm in a flashback while it's happening. I just felt like everyone was the enemy and I had to get out. My arms grabbed my coat and my mouth said I was done and my legs walked out... apparently I was leaving.

I sat outside, thinking, Well, here I am again, quarantined. How many times have I had to bail on life due to the grip of these symptoms? How many bridges have I burned because I've acted in ways I couldn't control? But this is my life, and participation in it now looks like playing brain games on my phone (to help reengage my left brain) and listening to guided meditation and doing breathing exercises. Luckily I'm unlikely to see those people again.

This experience taught me that I need to have a plan for dealing with triggers. It's impossible to anticipate every trigger, but just having an exit or timeout strategy before entering unpredictable situations could help maintain self-awareness to prevent losing control.

Handling Stress

With a stress disorder, the stress-o-meter is permanently maxed out because the body must deal with past and present stress simultaneously. As shown in the image below, there's just not a lot of room for extra stress. (I'm not sure why PTSD is sandwiched between good and bad stress in this image... good and bad stress are both in the present, while PTSD deals with the past, so it seems like that should go in the cup first.) At times in my life when I've been in long-term stressful situations, my symptoms have increased. And earlier trauma may have made me more susceptible to developing CPTSD in the first place.

my cup runneth over

Since I didn't know what was wrong with me for so long, I would try to live a "normal" life (or even push myself to the limits) and didn't understand why things seemed so much harder for me than for other people. Now I have learned that I have to be a lot more careful with how much stress I allow in my life so that I don't burn out.

During periods when major life stressors were few and coping resources were many, I was able to make significant progress in recovery. I haven't struggled with self-harm or suicidal preoccupation in years. I don't depersonalize to nearly the extent I used to, and I have very little tolerance for toxic relationships. Flashbacks don't occur as often and are easier to manage. But while these symptoms have decreased, other symptoms have taken their place. Insomnia seems to be worsening, and over the past two years or so, fatigue has been creeping steadily into the foreground. (Insomnia and fatigue are not always included as direct symptoms of CPTSD, but they can result naturally from the other symptoms -- for example, hypervigilance is exhausting.) For about a week the fatigue was so bad, even insomnia couldn't take it, which was an odd relief. Some days I am too tired to do basic daily tasks like cooking. Some days (like today) I already need a nap before I even go to work in the morning. It's a downward spiral because the more the symptoms interfere with my life, the more they reduce my coping resources, and the fewer coping resources I have, the more my symptoms run wild. Right now my focus is on getting my energy back because I can't really do anything without it.

What is CPTSD?

Although CPTSD is not currently an official diagnosis, the following definition has been proposed for inclusion in the eleventh revision of the International Classification of Diseases (ICD), to be released in 2017:

Complex post-traumatic stress disorder (Complex PTSD) is a disorder that may develop following exposure to an event or series of events of an extreme and prolonged or repetitive nature that is experienced as extremely threatening or horrific and from which escape is difficult or impossible (e.g., torture, slavery, genocide campaigns, prolonged domestic violence, repeated childhood sexual or physical abuse). The disorder is characterized by the core symptoms of PTSD; that is, all diagnostic requirements for PTSD have been met at some point during the course of the disorder. In addition, Complex PTSD is characterized by 1) severe and pervasive problems in affect regulation; 2) persistent beliefs about oneself as diminished, defeated or worthless, accompanied by deep and pervasive feelings of shame, guilt or failure related to the traumatic event; and 3) persistent difficulties in sustaining relationships and in feeling close to others. The disturbance causes significant impairment in personal, family, social, educational, occupational or other important areas of functioning.

The diagnostic criteria proposed by Luxenberg, Spinazzola, and van der Kolk in 2001 is similar, but laid out more clearly here:

To be more specific about what this looks like, here are some common symptoms of CPTSD patients:

Thank you, science; you are genuinely helpful. Here's an equally accurate way of putting it:

http://www.complex-trauma.eu

A Complex Diagnosis

I mentioned I was diagnosed with PTSD, but I'm going to focus on CPTSD because I believe that's more accurate for me. The C is for Complex.

I had never heard of CPTSD until I stumbled upon some information about it last summer. I immediately recognized myself in the diagnostic criteria and suddenly my entire adult life made sense. For years before that I knew there must be something wrong with me, but I didn't have a word for it so I figured I was just weird. (As a friend helpfully pointed out, "They're not mutually exclusive!")

So why was I diagnosed with PTSD? According to the official rules, you can't have CPTSD. In the US, the rulebook we use is the Diagnostic and Statistical Manual of Mental Disorders (DSM). The rules change a lot, so I don't mind breaking them.

I recommend the DSM for entertainment purposes only, so I'm including this brief history just for context: PTSD wasn't officially recognized in the DSM until the 1980s. It soon became apparent that this diagnosis was insufficient for survivors of complex trauma, and when the DSM-IV came out in 1994, it included Disorders of Extreme Stress Not Otherwise Specified (DESNOS) under the PTSD label. The term DESNOS didn't really stick (shockingly) but is basically the same thing as what is commonly called CPTSD today. The most recent edition, the DSM-5, tacks on the additional symptom clusters of CPTSD in a single sentence under "Associated Features Supporting Diagnosis." It also allows for a dissociative subtype, which is closer to CPTSD. This edition was published in 2013, but there is still a lot of controversy over whether CPTSD should be classified as a subtype of PTSD or as a separate disorder.

This chart I stole from the internet shows the difference between PTSD and Complex PTSD symptoms. I think this is taken from the ICD-11 (another classification system that I won't get into now), but the three symptom clusters of PTSD seem to reflect the DSM-IV. In the DSM-5, Avoidance has been split into two clusters: Avoidance and Negative Alterations in Cognition/Mood, which absorbs some of the CPTSD symptoms. So the PTSD diagnosis has expanded to become more inclusive of CPTSD than this chart shows.

Fun times.

Dear Everyone

I'm sorry for being such an unreliable friend/family member/citizen the last few weeks/months/years. I have been dealing with health problems that are difficult to talk about for several reasons.

Earlier this year I was diagnosed with Posttraumatic Stress Disorder (PTSD). Not life-threatening in the traditional sense, but it affects my life every day. These days, my worst symptom is chronic fatigue. Within the past year or so, I have had to cut my work hours in half, quit volunteering, and quit dancing. At this point I am struggling to just make it to work four hours a day. I am seeing an excellent doctor, therapist and nutritionist, but progress is two steps forward and one step back. Some weeks I'm functioning at such a low level that I have to cancel all of my plans, and my energy level is so unpredictable that I often avoid making any to begin with.

So, I'm sorry if I missed your birthday/wedding/major life event. I probably didn't forget. Chances are I had it on my calendar for weeks prior, and then some hugely exhausting task like commuting got in the way. I tend to be all-or-nothing, so I probably opted to disappear completely rather than be flaky. I'm working on that mindset.

I am starting this blog to process my experience in the context of community as a part of recovery. Apparently isolation isn't healthful. I appreciate your support.