How important is alexithymia in the treatment of psychogenic non-epileptic seizures (PNES)? (Post for clinicians)

Spoiler alert: Important in patients who have PNES and high alexithymia

What is alexithymia?

Basically, it is, not having words for emotions (a=not having, lexi=word, thymia=emotion) or in other words, having a hard time identifying and describing feelings.

In psychology it is associated with two concepts: emotional knowledge (EK) and emotional regulation (ER).

EK has to do with: 1) Being able to identify situations that provoke emotions, 2) detecting and recognizing emotions not only in yourself but in others, and 3) being able to name emotions.

What happens when there is a deficit in EK?
For example, if your friend states, “Laurie has gotten fat, obviously not as huge as you, but still really fat,” if your EK is diminished:

  • You may not accurately appraise that comment as insulting (or you may do so only fleetingly).
  • Although there may be physiological changes (e.g. muscle tension or change in heart rate) happening in your body, you will only vaguely be aware of these, if at all.
  • Because the situation has not been appraised correctly and the physiological signals have not been registered, the cognitive response, the conscious feeling of being offended will not be available to you.

So, if I were to ask you, did anything happen this week that might have stressed or upset you, you would truthfully say, “Not that I know of.”

The other concept I mentioned above is Emotional Regulation (ER). It is achieved through fluid connections between cognitive and behavioral processes that allow the person to assess, interpret and develop a response that helps maintain the system in an even-keeled state. Of course, if your EK is diminished, your ER is going to suffer.

What might that look like? If you have high alexithymia, the insult has started to reverberate and although there are physiological changes, you are not picking up on them. You remain unaware and even unable to put into words: “I was hurt” or “I am angry”, etc.  ER is lost and instead you have emotional dysregulation.  That free-floating emotion is then “converted” into a psychogenic symptom.

Some other important details that research into alexithymia has revealed:

People who are highly alexithymic tend to:

  1. Have deficits in identifying emotional states in others, whether they are presented visually (e.g. facial expression) or verbally (e.g. tone of voice). But they are especially at a disadvantage when faced with negative emotional states (e.g. anger, sadness and fear) rather than positive emotions.
  2. Have a paucity of words and descriptors when trying to communicate or explain feelings.
  3. Rely more on a less effective ER strategy called emotional suppression. In our example above, you would try to actively ignore your friend’s hurtful comment and perhaps distract yourself with something.
  4. Have memory deficits, especially when asked to link feelings with auto-biographical and other memories.
  5. Suffer more from depression, functional somatic symptoms, certain medical disorders, more interpersonal difficulties, and lower quality of life.

So, as a psychologist working with someone who has high alexithymia and PNES, what might this look like?

First off, when you explain to the patient, “PNES is a stress disorders,” and ask, “has anything stressful occurred that might have triggered your seizure?” The patient will often truthfully respond with a “no.”

Additionally, because patients with alexithymia tend to have memory deficits for memories that are emotionally laden, again, a negative response should not be unexpected. The patient may very well have forgotten that unhappy or tense event that preceded the seizure!

So how would a psychologist work with someone who is alexithymic and has PNES?

There are several ways to approach this, but for the most part, rather than simply asking if something stressful occurred in the week; it is necessary to ask for a report of the hours and days prior to the seizure.  As the patient outlines the events of the week, the patient may encounter something that they had forgotten or suppressed, or something will be mentioned that seems relevant and that the psychologist may decide to highlight and analyze more carefully.

Asking the patient to keep a seizure log in which they write down every time they have a seizure and jot down what they were doing at the time and even what had been going on earlier that day.

The psychologist will also work with the patient helping to identify physiological reactions and then associating those with a descriptive word, a feeling.

It will also be important to increase the patient’s vocabulary of emotions.

The psychologist may encounter that the patient may forget stressful events from one session to the next and will benefit from being reminded of a particular event and memory in later sessions.

Furthermore, with specific recounted events, the psychologist might suggest an emotion associated to that particular event and open the space for reflection (e.g. you mentioned that your boss yelled a you. Most people might feel hurt, or sad or angered by that.  How about you?).

Suggested reading for professionals (Much more detailed presentation of research into alexithymia):

Alexithymia: Advances in Research, Theory and Clinical Practice(Luminet O, Bagby RM & Taylor GJ (Eds.), 2018.

https://books.google.com/books/about/Alexithymia.html?id=3Os5swEACAAJ

Next blog post: What can you do about alexithymia if you are the patient?

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