Ever since my tonsillectomy, I’ve noticed my OCD dying down significantly. I’ve found myself touching cabinet knobs in the kitchen that I haven’t been able to touch in over a year. I’m not checking my room for people trying to hurt me. I’m not washing my hands all the time.
I’ve been in CBT all summer, but the improvement I’ve seen seemed to happen much more suddenly and with much less effort than what I normally get from using therapy techniques alone. It was as if maybe, I had less brain inflammation, because I no longer had an infection in my tonsils.
But one evening, I was in the car with my parents heading to church, and out of nowhere, the OCD thoughts came roaring back:
You didn’t turn off the stereo, so now the whole house is going to burn down while you’re gone. You didn’t bring your computer with you in the car, you haven’t backed it up, and now, you’re going to lose five years of work when it burns up.
My heart began to race as I wrung my sweaty hands together in the back seat.
“Hey… I left the stereo on. Do you think that’s okay?” I asked my parents.
“Yes, that’s fine. Nothing will happen,” my mom assured me.
But that wasn’t enough. My brain wanted me to ask again and again, or better yet, go back home and turn everything off. I wanted some reassurance that my thoughts were lying to me (even though part of me knew it was all ridiculous). But after the months of therapy I’ve been through, I knew that no matter how long I kept asking, I’d never get the certainty I craved. So I stopped and sat there with the anxiety instead.
It wasn’t easy, though. The anxiety felt like someone was scraping their fingernails against a chalkboard inside my head. It was as if I had to crawl out of my skin, but I couldn’t. OCD is like a little brother that keeps poking you all day long, no matter how many times you ask him to stop.
But like a naughty little brother, if you can learn to ignore him and not react, eventually, he will go away.
To calm my anxiety, I tried some “box breathing:” inhale for five seconds, hold your breath for five seconds, exhale for five seconds, hold your breath for five seconds again, and repeat. I’ve never been a fan of breathing exercises, but this technique actually works for me.
By the time we got to church, I was feeling much better. But of course, I was still waiting for the rest of the flare to come. If my OCD had suddenly spiked, wasn’t I going to lose myself at any moment? Wasn’t I about to start doing the chorea dance again? Wasn’t I about to fall into a deep depression? Not necessarily.
My psychiatrist told me that he expects I’ll always have a tendency toward OCD to a more mild extent, even when I’m cured from PANS. He believes that people with PANS are pre-disposed to OCD, so I shouldn’t expect it to completely go away from IVIG or tonsillectomy or any other medical treatment.
He wasn’t trying to negate that those things help OCD in people with PANS. He was just saying that, like everyone else with OCD, I have to treat it with therapy so that I know how to manage whatever tendencies and learned behaviors may be left when I’m otherwise symptom-free.
I must admit that I was a little discouraged when I heard this, but there’s a bright side if he’s right: just because I have one hour where my OCD acts up a little doesn’t mean I’m “flaring” in the PANDAS sense of the word. Just because my OCD is worse one night doesn’t mean I have to load up on Prednisone and prepare for battle. If I do have some degree of “normal” OCD, then it will simply act up occasionally, especially under stressful circumstances—but OCD can be managed.
Sure enough, the rest of the PANDAS symptoms never came that night. Maybe it was just a “flare” of regular OCD. Maybe it was a very mild PANDAS flare. No one knows. But what I do know is that, aside from that night, my OCD is dramatically better than it was a couple weeks ago.
To me, I think the most important thing for PANDA’s is to treat both the immune response causing the worst of the OCD and to do CBT to deal with the OCD in the meantime—whether it’s purely caused by inflammation or if it’s also something we’ll always be prone to.
4 thoughts on “OCD No More?”
Do you mind me asking what your PANS is caused by? I.e: strep, microplasma, etc. My daughter’s is due to high microplasma and her OCD is raging. Just wondering if the tonsillectomy helped due to yours being caused by strep. Thanks! I really enjoy reading your blogs. My daughter is 8 and it is so hard to see her struggle.
Hi Kelly. Sorry to hear your daughter is struggling. We never figured out what the initial trigger was for me. I had severe fatigue and joint pain for several months when I was eleven and negative tests for all sorts of viruses (though I don’t think anyone ever considered Strep/Rheumatic Fever at the time), followed by a sudden onset of OCD. I tested positive for EBV last spring, and we believe this was the trigger for last summer’s exacerbation (and it may have stayed in my tonsils). The doctors found a Serratia marcescens infection in my tonsils/adenoids and no Strep, so this was a big surprise for everyone.
Great post, and great news!! You describe so well why CBT is necessary even when the OCD is caused by PANS.
Thank you! 🙂