How PANS Really Feels

“Mom, I want to die!” I burst into the living room screaming, a look of sheer terror in my eyes.

“Please… Help me!” I plead as I crumple into a heap on the sofa, wailing and yelling at the top of my lungs.

I’m being tortured—a sinus infection is causing my immune system to attack my brain, triggering sudden and severe mental illness. This is just another evening in the life of someone with PANS/PANDAS who’s having a flare…

The only way to describe the torment I feel in these moments of a severe flare is that it’s like someone has jabbed a knife into my brain, but the pain is mental instead of physical. It’s like fingernails scraping against a chalkboard, and the chalkboard is my soul being whittled away. It’s like a bomb going off inside my mind, scattering my thoughts and setting my brain on fire. I’m no longer present, but I’m aware enough to not be spared the grief of losing myself. It’s mental agony so intense that, in those hours, I’d rather die than continue to endure it indefinitely.

Shockingly, just a few days before, I wasn’t unlike any other college senior—I was happy, full of life, a bit stressed from midterms, yet looking forward to all that was in store for me. Killing myself was not something on my agenda. But then, I caught a cold, and I soon noticed myself becoming forgetful and struggling to think clearly. A few days later, I started refusing food out of fear (not from a lack of appetite). Then, I suddenly began hearing looping thoughts telling me that I wanted—and needed—to die. The most basic tasks were impossible—simply putting my shoes on was mentally overwhelming. I didn’t care about anything and was completely disengaged with life.  Every few hours, I’d suddenly become gripped with a wave of terror for no reason, and I’d start crying uncontrollably because of the severity of the mental pain.

Within a week’s time, I’d lost my mind.

My parents had come to stay with me for fall break, believing they would bring me home for the rest of the semester. The usual high-dose steroid regimen I take for flares had failed miserably—even a high-dose Solumedrol IV drip did nothing. However, one night, in a last-ditch effort to rescue me from the brink of insanity, we pulled out what was left of an old Azithromycin prescription, and I started taking it (with my doctors’ approval). Sometimes, if steroids don’t help PANS symptoms, it’s a good indication there’s an unresolved infection. I was already on penicillin, but plenty of bacteria can’t be killed by it.

With three days of Azithromycin, I felt no change—though my parents claimed I was starting to look a little less tormented. And then, one day, I started doing homework. Then I ate real meals. Before long, I felt engaged with the world again. By the fifth day, it was as if the whole incident had never happened; I was 100% back to where I was before.

People often ask me what it’s like to have PANS—to survive the mental anguish of flares and then in the good times, to live with the knowledge that it could all recur any day. But the truth is that, to me, there’s nothing like losing, and subsequently, finding your mind again to make you appreciate the goodness of all the little things in life that so many of us take for granted. When I have a bad flare like this one, PANS makes me want to die, because it turns my brain against me. On all the other days, PANS makes me want to live as fully as possible, because I know tomorrow is so uncertain, and I want to enjoy all the good things in my life while I can.

Living with PANS has never been easy—in fact, it often feels impossible, but now that this flare is over, I’m grateful to be alive and well and back in class, and I’m grateful for Azithromycin.  And of course, I’m grateful for parents and doctors who don’t give up on helping me live even when my brain tricks me into wishing that they would.

17 thoughts on “How PANS Really Feels

  1. I feel this pain every time I have a PANS flare. It’s terrible, even worse than any Lyme aches. But it’s more of a mental pain and a physical pain, not just physical.

  2. I know that pain! I am all too familiar with it. And it does make you want to die rather than continue being tortured by it. Sometimes it’s the worst pain I’ve ever felt! Does getting cool help you? It does me and my inflammation.

    1. Awh, I’m sorry that you know that pain, but it sure seems like it’s almost universal among people with PANS. I’ve never tried getting cool, but if it comes back, I might have to see about that. Thanks for the tip!

  3. Beautifully written, as usual. You nail it.

    Not sure how to get in touch with you, but would like to cite your blog in an upcoming presentation and would like your permission. Would you reach out to me?

    Wishing you the best as you continue to heal.

  4. Thank you for posting. It really helps to know we are not alone. It is amazing that you are able to share your experience with this disorder. You are very brave , I hope you feel better real soon

  5. Wow. What a wonderful post. I am so sorry you went through that torment, but as you say, it makes you appreciate the good things in life. And…being such a gifted writer, you are able to express what you are feeling so well that you give an amazing gift to others – hope.

    1. Thanks, Janet. Being able to write about this, share it with others, and hopefully help someone along the way makes going through all of this so much more tolerable. Thanks again for reading!

Share your thoughts. What do you think?