29 January 2016

Skittles and the VA

I keep a folder of research papers, articles, blog posts, and other stuff titled 'PTSD Files'. It's an extension of a three-ring binder that I first started accumulating things in right around the time I was first diagnosed with PTSD. I highlight, I annotate, I underline, I write in the margins-- both on the paper pages and in the pdf files that live on disk. When things get rough, I read through the pages and look at the notes I've left myself. When things work I make notes that say so. When things don't work I try to record that too. It's not really a diary (this blog serves that purpose); I only loosely keep track of bibliographic information, so it's not an organized collection of research sources either. Perhaps informal personal library is the best description-- and the description is important because I want to point out that it's not the kind of thing that you'd put together if you were doing actual research. It's a collection of stuff.

The interesting thing about my PTSD files, as I leaf and page through it all, is that some patterns have emerged over time. (There's no scientific method behind the scenes here. So standard disclaimer, what I'm going to say next is my opinion as a patient. I'm not a mental health professional, but I've met a lot of them.)

The following are the types of PTSD therapy I've been involved in at the VA:

  • Cognitive processing therapy
  • Mindfulness therapy
  • Behavioral Activation therapy
  • Prolonged Exposure therapy
  • Couples therapy (when I actually had a SO)
  • Transitions Clinic
    • Mindful eating, Tai Chi, controlled breathing, art therapy, developing a wellness recovery action plan (WRAP)
These are the medications I've been on at various times for PTSD/anxiety/depression:
  • sertraline (SSRI)
  • citalopram (SSRI)
  • venlafaxine (SNRI)
  • trazodone (SARI)
  • bupropion (SSRI)
  • vitamin D
This doesn't count the times I went to the VA before I was actually diagnosed with PTSD (got out in 1992, wasn't diagnosed until 2009), or the social anxiety therapy I went through (2005ish) before I went back to the VA.

Has any of it worked? Yes and no. It depends on your (my) definition of success. It's hard to quantify what it means to say "this drug worked" or "that therapy worked". Correlation, as I have learned in natural science, computer science and math classes, does not equal causation.

That doesn't stop anyone, especially the VA, from often saying that drug A or therapy B is successful because they were able to survey a number of veterans at one hospital and no one bitched very loudly about it. When I first agreed to try medication, I distinctly remember having the psychiatrist explain that "we'll try this, and if it doesn't work we'll try something else and eventually we'll get the cocktail mix right." That's what I read in "the literature" and I hear it from other veterans. A lot of us call the pills by the general name Skittles, after the packets of different colored pellets of high density sugar in the candy section-- you eat them by the handful. PTSD treatment is like that-- handfuls of pills that seem to do about as much to get rid of the PTSD as handfuls of Skittles.

Again, definitions matter. PTSD is supposed to be something that can be cured-- watch a movie about someone with PTSD. At the start, it's all about the loss of a job and a failing relationship and the world falling apart and towards the end the script or the plot always hits fast forward a few months or a few years and shows the person living happily ever after. See, the script says, go get help and everything will be better before the credits roll.

The general impression I get, from all of the information I've collected put together with everything the VA has said over the years, is that no one really knows what works. If you get lucky and get the right combination of Skittles, things get better for you. If you don't, change the flavor. If you run out of flavors, well, we'll deal with that later.

I'm out of new flavors to try. Maybe pushing my meds levels back up will help make me feel better than I have been, maybe not. I was taking a much higher dose of what I've been taking (plus several other medications) before and during the time I was homeless, and ended up homeless anyway. I still have the same PTSD symptoms-- actually they shift around sometimes, but it's the same lot. I've honestly given up hope in the VA being able to do more for me, because I look at what they offer and I've had a taste of nearly all of it.

That little voice in the back of my head is whispering "ok, if you're going to do this on your own, isn't that the hard way?" My response to that is, what have the past couple of years been but the hard way?

I'm done with the meds and I'm done with the VA. Time for a different approach.

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