How PTSD Can Result From Neuromyelitis Optica Attacks

NMO patients need to take mental health symptoms seriously, this columnist says

Jennifer van Amerom avatar

by Jennifer van Amerom |

Share this article:

Share article via email
banner for

I have this recurring dream where I’m trapped in a room. I can hear voices on the other side of the door, so I call out, except my voice feels heavy. The words are caught in my mouth, so no one can hear me. I try to get up. I’m not sure if I’m lying or sitting down, but it’s irrelevant, as I can’t reach the door anyway. My head is telling my legs to move, but I feel like I’m swimming in a vat of molasses.

Sometimes I free myself from my dream. Other times my screams can be heard in the next room, and my husband gently wakes me from the prison in my mind.

As behavioral sleep medicine expert Michelle Drerup told the Cleveland Clinic, dreams are associated with a “consolidation of memories.” For many patients with rare diseases like neuromyelitis optica (NMO), our minds can be plagued with many unpleasant memories. It’s always felt unfair to me that my nighttime is just as challenging as my daytime.

I wish I dreamed about any time before NMO.

Recommended Reading
banner for

How a Lack of Understanding About NMO Affects My Mental Health

PTSD and NMO attacks

I recently had dinner with several other patients. Throughout the evening we talked about our lives, but also about our experiences with NMO. One patient said that after an attack, she feels like she has post-traumatic stress disorder (PTSD).

Wait, what did she say?

It occurred to me that many patients, including myself, devalue the trauma we’ve endured during our attacks. It’s not like we suffer from PTSD; many of us do suffer from it.

According to the Mayo Clinic, “[PTSD] is a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it.”

I know losing the ability to walk, losing vision, inserting a port, and enduring treatments such as intravenous Solu-Medrol (methylprednisolone sodium succinate) or Rituxan (rituximab) can all be terrifying events. Yet many of us don’t view them as traumatic or think we need mental health support.

How to talk to your doctor about your mental health

As an NMO patient, I’m hyperfocused on managing my physical health. I know my specialists are focused on my current treatment plan, which consists of Enspryng (satralizumab-mwge), gabapentin, modafinil, omeprazole, and Suboxone (buprenorphine/naloxone), and whether it’s keeping me stable. That’s a lot of medication to manage, so by the time my visit is over, we haven’t even spoken about my mental health.

I always feel awkward bringing up the conversation because it never feels like the right moment. Besides, how does one begin to highlight concerns about such a subjective topic? One doctor might say I’m just feeling isolated and overwhelmed due to the pandemic. Another might call it stress and dissociate my mental health challenges from NMO.

The Global Assessment of Functioning is the scale used by medical professionals to determine how a patient’s mental health symptoms affect their daily functioning. Similar assessments are available online and might help provide you with some language to use when speaking with your doctors. For example, a patient might say, “I feel there isn’t enough balance in my life.”

I’m curious how other NMO patients engage their team of specialists on the topic of mental health. You’re invited to share your experiences in the comments below.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


Leave a comment

Fill in the required fields to post. Your email address will not be published.