Functional seizures: The patient’s perspective of a diagnostic and treatment odyssey, 2022, Andrini et al

[Andy]

Highlights

• Functional seizures remains a complex neuropsychiatric condition to identify and treat.
• Practitioners must address management of physical symptoms and underlying causes.
• Management strategies can fail if their reasoning is not properly communicated.
• Better outcomes may result where treatment rationale is emphasized from outset.

Abstract

Functional seizures can be challenging to properly diagnose, often leading to delays in treatment. The etiology of functional seizures is multifactorial, with psychological factors identified in many, but not all cases. Misdiagnosis may occur due to clinical features mimicking other medical conditions. Once a correct diagnosis is reached, delivery of definitive, evidence-based treatment may be challenging due to limited availability of specialized resources. Research shows psychological education and cognitive behavioral therapy (CBT) have the greatest efficacy. However, individual differences, including acceptance of the diagnosis, therapeutic alliance, duration of symptoms, comorbidities, and access to care may influence outcomes. There is a critical need for reports that can help identify barriers to effective diagnosis and treatment.

We present the diagnosis and treatment of a woman who visited the emergency room after an attack of predominant left-sided paralysis, speech dysfunction and altered awareness. Following multiple daily episodes and visits to multiple medical practitioners, testing led to a diagnosis of functional seizures. While the patient was recommended to undergo a variety of therapeutic interventions, including CBT, she ultimately terminated treatment. In a subsequent interview, the patient revealed her personal experience with perceived limitations of acute management strategies. We explore the complexities of diagnosing and treating individuals with functional seizures.

Open access, https://www.sciencedirect.com/science/article/pii/S2589986421000836

 

[Solstice]

Trying to wrap my head around the term "functional seizures" :') .

 

[chrisb]

I'm trying to wrap my head around the idea of a "clinical feature" mimicking anything - let alone "other medical conditions".

 

[Hutan]

This poor women was having many seizures a day. At followup several years later, she was still having seizures, but had learned to tell when they were coming, and sit down.

Some highlights from the paper:

CBT sessions encouraged relaxation techniques, but these paradoxically caused increased stress and anxiety. She did not understand how the techniques directly contributed to relieving her functional seizures. Similarly, the patient was engaged in discussion of past traumatic events but did not understand how they related to the manifestation of functional seizures. The disconnect between the patient’s conceptualization of functional seizures and the therapeutic objectives appeared to be the single most important miscommunication during this patient’s pursuit of treatment.

The patient was discouraged by the experience of not feeling validated by providers for how terrifying it was to experience an episode. She was referred to a number of different treatments intended to help the episodes, but she felt that none of the healthcare professionals were experienced enough with functional seizures to help her. She stated that she had “talked to many therapists who wanted to see her but really did not have any experience,” leaving her feeling at a loss for what to do.

With respect to the patient’s perspective on how to care for individuals with functional seizures, the patient attributes most of her functional seizure episode management to self-directed learning about the triggers and warning cues for when episodes will occur.

This bit was particularly remarkable - the authors acknowledge many people get better without treatment. And the treatment of functional seizures usually takes months...

The treatment of functional seizures usually takes months because of the time it takes for the patient to finally come to terms and accept their condition [29]. Studies have shown that episodes can cease in many patients without treatment within 3–6 months

During the interview several years later, the patient continued to express that discussion of past events in CBT felt irrelevant, despite concern by providers that they may be linked [32]. Notably, she stated “all he talked about was about my life and my family and my relationships and my work, but it wasn’t really dealing with what I’m going through. […] I felt that I could be a better therapist for myself because I felt there was no connection. They had no idea. They were treating it as a normal therapy session and that wasn’t what I needed, so I stopped.” Patients who cannot correlate stressors to their condition may have a reduced ability to identify with their diagnosis of functional seizures [12], [14]. Thus, it appears that lack of understanding between this patient and the medical practitioners presented the most significant barrier to pursuing effective treatment and progress for resolving her functional seizures.

I find it amazing that the authors could put so much effort into researching and writing this paper and still be completely oblivious to the fact that the medical professionals caused harm to this woman and provided no help. It was not a problem in communication. The problem was that the medical professionals had absolutely nothing of use to offer.

 

[ukxmrv]

This poor women was having many seizures a day. At followup several years later, she was still having seizures, but had learned to tell when they were coming, and sit down.

Some highlights from the paper:







This bit was particularly remarkable - the authors acknowledge many people get better without treatment. And the treatment of functional seizures usually takes months...






I find it amazing that the authors could put so much effort into researching and writing this paper and still be completely oblivious to the fact that the medical professionals caused harm to this woman and provided no help. It was not a problem in communication. The problem was that the medical professionals had absolutely nothing of use to offer.

Is this one of those "CBT" sessions where the patient has to confess to a distressing life event which is seized on as the reason for their physical symptoms?

(I went through something similar in a IAPT supposedly "CBT" setting where the therapist picked through my childhood and adolescence (before ME) trying to find something that would explain to them why I ended up sick. I was then expected to agree to this as being the cause.

The Therapist told me that all ME cases and all immune related diseases (including autoimmune) were caused by distressing previous experiences. hence the interest in families, current relationships, work etc

There was, like this patient maybe?, a lack of interest in how a lack of medical care harmed me)

 

[Arnie Pye]

I don't blame this poor woman for terminating treatment. Apart from anything else, the patient appears to live in the USA. So she is paying for all this failed and useless treatment.

I wonder if they actually did much in the way of biological testing. I was rather shocked to see that they prescribed Haloperidol (an anti-psychotic used in the treatment of schizophrenia) in the very beginning because of a comment from the patient that it helped 23 years ago. In the patient's shoes I would have kept quiet about this.

Upon arrival, she was immediately treated with lorazepam, haloperidol, corticosteroids, and diphenhydramine. Haloperidol and steroids (Solu-Medrol) were administered empirically to relieve her symptoms because the patient shared her recollection of having received the medication during a similar event 23 years prior.

This appears to me to be very, very lazy doctoring. I wonder what evidence there was that the diagnosis (if any) and treatment was correct 23 years ago. It sounds as if the doctors were just "winging it".

Just as an aside...

Various parts of my body used to lock up sometimes and any attempt at relaxing would fail within seconds, although I don't have the problem any more. As a result of experimentation (by me) I found out that my problem was magnesium deficiency. Cheap as chips and works very quickly if my muscles won't relax e.g. if I get cramp.

According to wikipedia (I know, I know - a dreadful reference), magnesium deficiency can cause epileptic seizures . Yet, if you read the link on epileptic seizures it doesn't mention magnesium deficiency as a cause. The problem with testing magnesium is that it is an extremely poor test and few people would ever show up as being deficient in a such a test.

There are various other electrolytes that can cause muscles to spasm if levels are wrong. I wonder what the effect would be on the head and brain.

 

[Hutan]

Is this one of those "CBT" sessions where the patient has to confess to a distressing life event which is seized on as the reason for their physical symptoms?

This is what is said about the CBT:

CBT was the last known treatment this patient pursued, beginning on August 15th for three sessions and ending on August 28th. This treatment was recommended by a prior ER physician. The CBT therapist acknowledged the patient’s missing brother (resolved) and close friend’s brain cancer diagnosis to be significant stressors and potential precipitators for functional seizures. The medical records from the CBT therapist were also the first and only to note that the patient’s mother experienced anxiety and depression associated with spousal infidelity and being bitten by a dog when the patient was 15 years old. No prior history of therapy was indicated. During the second session, the CBT therapist explained functional seizures episodes as a “conversion disorder” and that the focus was on accepting and integrating the condition into the patient’s life. A plan to reintroduce hypnotherapy and introduce breathing techniques to manage the episodes was initiated. However, the patient stopped attending CBT after the third session and ceased all other treatments as well.

It's not at all clear if the woman's seizures were being linked to the trauma of herself being bitten by a dog when she was 15, or if instead the issue was her mother being bitten by a dog when the patient was 15. Also, the patient's mother was upset about spousal infidelity, possibly when the patient was 15. Regardless, although it's hard to know exactly how traumatising each of the events noted were, it all sounds rather like grasping at straws to connect them to recurrent seizures.

This statement at the end of the article adds a further twist to the account. I find both the quality of the medicine and the science set out here disturbing and very revealing.

Declaration of Competing Interest
The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: One of the authors of this case study has a personal association with the patient of interest, but purposefully did not interact directly with the individual regarding this research. This case study was completed following all IRB guidelines.

 

[Hutan]

• Management strategies can fail if their reasoning is not properly communicated.
• Better outcomes may result where treatment rationale is emphasized from outset.

I mean, what exactly are the authors advocating? It seems to be informing the person more clearly that her physical symptoms are linked to past trauma and stress, so that she becomes willing to engage in therapy.

So, are they suggesting that the possibility of a biological cause should never be mentioned to a patient? Do they think that if the CBT therapist had said that the woman's problem was conversion disorder on the first session rather than the second, that the woman would not have terminated the therapy by the third session? How can you 'properly communicate' a management strategy when that management strategy is based on unfounded and wild speculation?

Ugh, this one got under my skin.

 

[dave30th]

being bitten by a dog when she was 15, or if instead the issue was her mother being bitten by a dog when the patient was 15.

I read this first as the mother having been bitten when the mother was 15, but when I re-read it I was convinced that the patient herself was bitten when the patient was 15. It's not clear. But we know two things: Someone was bitten, and someone was 15.

 

[Hutan]

It feels as though a podcast could be made disentangling story. Or an episode of a medical soap opera.

(not to make light of the woman's experience, which undoubtedly has been awful)

 

[Wonko]

How old was the dog?

 

[Milo]

It all sounds to me like propaganda. That poor woman.

 

[chrisb]

The only interesting question which arises from this paper is: "Do they run any critical thinking classes at Schmid College of Science and Technology, or, come to that at Stanford?"

EDIT perhaps I should expand on that.

How can they say that etiology is multifactorial when they don't know the causes? All they can claim are correlations. Is that what they mean by etiology? Presumably the multifactorial features are biopsychosocial. But that, potentially, includes everything. What useful claims are made?

At least when Wessely claimed that etiology was not important, it was a meaningful statement - even if wrong.