When PTSD Takes Over
This is not what I planned to write this week. I wanted to write about my awesome experience at iOSDevCampDC. But something happened that impeded my ability to focus on the truly wonderful things that are happening in my life right now. Something big and scary and consuming. Something that demanded all of my attention.
I had what appeared to be a seizure. Twice.
I’d been having strange muscle spasms, mainly at night. I mentioned them to my chiropractor, who is also a close friend. She said to monitor them, but as long as they were mild and infrequent, they weren’t much cause for concern. I had already scheduled an appointment with my neurologist for later this month, so she said I should mention it to him then.
But they got worse. More frequent. More areas of my body were spasming. My arms started twitching during my 40 minute drive to my Chiro appointment. I told her about it, and she had me lay down on the table so she could evaluate me. Before she could begin, I started having the full body spasms again, in a way that looked like a seizure. She refused to touch me, and said I needed to see my neurologist. Now. And no more driving. I had to take an Uber home.
The neuro did a few muscle tests and said he thought the spasms were caused by my whiplash. He gave me a muscle relaxer and referred me to a physical therapist (PT). He said if that didn’t work, we could do further testing.
I hated the muscle relaxer. It made me dizzy, drowsy, unable to think. I didn’t see much improvement in my symptoms, so I stopped taking it after 2 days.
The PT did some gentle traction on my neck, which triggered another round of muscle spasms, even worse than before. The PT refused to treat me further, because it looked like gentle treatment was causing a seizure.
I called the neurologist, and he still insisted that it wasn’t a seizure, because I wasn’t losing consciousness. He said for me to get a series of MRI’s and if we didn’t find anything, he’d order an EEG.
I was so frustrated and scared. I felt like the neuro wasn’t taking me seriously. He was so focused on proving that it wasn’t a seizure. I didn’t care what it was called, I just wanted it to stop. I wanted to be able to drive again. I don’t like having to rely on other people for rides.
I couldn’t get into an MRI for a week and a half, and I was getting significantly worse each day. As the symptoms got worse, so did my anxiety. I needed an answer soon. So I did some research into seizures and seizure-like symptoms.
I found two possible diagnoses that fit my symptoms: a simple partial seizure (potentially caused by brain trauma, and I have a concussion) or a non-epileptic seizure (also called a pseudo-seizure, usually caused by PTSD/high anxiety). The first was usually treated with medicine, the second with biofeedback therapy and/or cognitive behavioral therapy.
I knew I had PTSD and high anxiety, so I found a local neurotherapist who does CBT and biofeedback. I figured trying that was a win/win… at worst, he’d help me manage my anxiety, which was shooting through the roof, and maybe it would help make the spasms go away too.
The neurotherapist is awesome. He really listens to me, validates my feelings and concerns, and he came in on his normal day off so I could start treatment immediately.
He said part of the biofeedback therapy is an EEG, so we’d be able to determine if these were actually seizures. Finally, I was going to get answers, and a plan for treatment.
I’ve had one biofeedback session, yesterday. Basically it takes the EEG results and sends them back to your brain in the form of music and/or pictures. If your brainwaves are chaotic, the music/pictures are too. When your brain is calm, the music is soothing and the pictures come into focus. So it is like forcing the brain to look into a mirror so it will correct its behavior.
Afterwards, the doctor showed me my brainwaves. When my eyes were closed, my alpha waves were astronomical, often going off the chart. The beta and theta waves were higher than normal too, and none of them were moving in sync with each other. He said my brain looked like a veteran’s after returning from war.
But with my eyes open, focused on the pictures, my brain calmed down, almost too much. He said I was stuffing everything down so I could function.
So it wasn’t a seizure. Essentially, my brain is convinced that I am always in danger. It’s to the point that when I try to relax, it’s causing muscle spasms to keep me alert.
This makes so much sense to me. I’ve known I’ve had PTSD for a long time. I suspected it was actually Complex PTSD, which is when a person feels trapped in a traumatic situation (like a victim of domestic abuse). I’ve spent years living in fear. And although I’ve escaped the cause of my fear, the cumulative effects of the C-PTSD and the extremely high stress levels I’ve endured have taken their toll.
Now I have quantifiable proof that my brain has been chaotic at a level beyond my conscious control. There is something oddly comforting about seeing the proof of my anxiety up on the screen, hearing it’s voice in the form of a high pitched violin. It’s validation. Now I can say “see, that’s what I’ve been dealing with. There is my struggle, right there. I’m not making it up.”
Most people have no idea my anxiety is as high as it is. I apparently handle it well. I’m used to it, and I know all kinds of tricks to deal with it so I can function. I’ve often been told I “work well under pressure”. That’s because I don’t remember what it’s like to NOT work under pressure. I’ve had to adapt to the constant weight of anxiety and depression, to feeling overwhelmed by even small tasks. I’m incredibly stubborn sometimes, and I’ve used that to force myself to keep moving forward, no matter what.
The key thing I want to point out here is that I thought I had it handled. I’ve worked my butt off to create a life for myself that is less stressful, less dangerous. I finally succeeded in that. I have a job I really love, with a boss I admire, that makes enough money to pay all my bills. I have supportive friends. I’m finally in a good place.
But I am SO used to having constant stress and anxiety, that my body doesn’t know how to handle the lack of it. I’ve removed the cause. Now it’s time to heal the damage. The hardest part is admitting that I need help to do that. I’ve managed really well on my own. But I can only do so much.
Now that I have a path forward, a treatment plan, I feel so much better. For the first time, I actually have hope that I can get over most of my anxiety. The neurotherapist said most people get about 80% improvement, then it plateaus. That sounds so amazing to me… to be able to function again without constantly fighting my anxiety…
So I invite those of you who are struggling with anxiety and/or PTSD to seek treatment. Look into biofeedback therapy. I saw some improvement after one session, and I’m hopeful that continued treatment will significantly reduce my anxiety.
Hope is a pretty awesome feeling.