An Instructional Module for Functional Dissociative Seizures (FDS) in Hindi: Enhancing Communication and Management in India

Abstract

Background and Objectives:

Functional dissociative seizures (FDS) are very common in neurology clinics, they straddle both neurology and psychiatry. In India, scarce resources and guidelines are available for effectively conveying their diagnosis and management, which leads to a substantial gap in care. We aimed to provide an instructional module for FDS, tailored to clinicians, patients, and caregivers in Hindi, to enhance communication of diagnosis and facilitate suitable management strategies.

Methods:

The instructional module development process was based on clinical settings and expert opinions. A standard translation process was performed to ensure the linguistic and cultural equivalence. Validation was carried out by a panel of 15 validators, comprising 13 neurologists and two psychiatrists, to identify key psychoeducation components and their significance. They were provided a questionnaire consisting of five questions that were related to completeness, understandability, legibility, clarification, and usefulness of educational material for clinicians, patients, and caregivers. Items were rated using a 5-point Likert scale.

Results:

There was agreement on four items (Q1, Q3, Q4, and Q5), whereas approximately 85% of the validators agreed on the remaining one item (Q2). The instructional module demonstrated high content validity as indicated by both item level-content validity index (0.98) and scale-level content validity index (0.97), alongside content validity ratio and modified kappa statistics.

Conclusions:

The developed Hindi instructional module for FDS serves as a valuable tool to enhance the communication of FDS diagnosis and dispel misconceptions. This offers a comprehensive resource for clinicians, patients, and caregivers in India, potentially bridging gap in FDS care.

Introduction

Functional/dissociative seizures (FDS) (formerly known as Psychogenic Non-Epileptic Seizures (PNES)) are sudden changes in consciousness and behavior that somewhat mimic epileptic seizures, but are not accompanied by electrophysiologic changes which are a defining feature of seizures.[1,2] Due to the unavailability of consistent data, the exact prevalence of FDS cannot be determined. A few studies have found the prevalence of FDS among the rural population to be approximately 2.9 per 1000 people compared to around 33 per 100,000 people in Western countries.[3,4] About 10%–20% patients admitted in seizure monitoring units have FDS.[4] FDS are a type of dissociative disorder according to International classification of Disease-10 (ICD-10).[5] FDS are difficult to diagnose due to shifting presentation of symptoms, which makes them identical to some types of seizures. Misconceptions and biases also play a role, which negatively impacts the management of FDS.

Patients with FDS grapple with the lack of information regarding their symptoms, which leads to confusion and frustration. FDS are a neuropsychiatric disorder, and this adds to the confusion regarding its management. Even though physicians have accepted the psychologic model of dissociative disorders, it is not readily employed during the diagnostic process. Numerous studies have indicated that physicians continue to experience uncertainty about various aspects of FDS ranging from reasons for FDS to perceptions about treatment.[6,7] Moreover, most physicians view dissociative disorders and malingering in a similar light.[8] All these factors impede accessibility to treatment and increase medical expenditure. Recognition of FDS can be difficult even for neurophysicians, while home videos do assist in the diagnosis.[9] Video electroencephalograph monitoring of the events is the gold standard in diagnosing FDS.

Studies have noted an improvement in the symptomatology of FDS when patients are given a psychoeducative intervention or are simply explained the symptoms of FDS.[10,11,12,13] However, previously published instructional guidelines on communicating the diagnosis have not been validated or translated for the Indian population. The aim of the present study is to develop an information module for patients with FDS that can provide essential information regarding the condition.

Methods

Development

This study was conducted in accordance with ethical standards, and approval was obtained from the Institutional Ethics Committee, AIIMS, New Delhi [Ref no: (IEC-2/14.01.2022), RP-33/2022]. This instructional module was based on previous clinical protocols published on FDS.[14,15,16] Module-related interviews were conducted with neurologists and psychiatrists with experience treating patients with FDS [Table 1]. The process of psychoeducation, problems faced by clinicians during psychoeducation, and common misconceptions held by the patients which impact the treatment were explored. This data was then analyzed by epilepsy researchers and psychologists. This information was utilized for formulating guidelines for communication and management of the FDS population for clinicians, patients, and caregivers in Hindi.

Table 1.

Experts/panelists’ opinions on the FDS guidelines

Tested items/questions	Strongly disagree (1)	Somewhat disagree (2)	Neither agree nor disagree (3)	Agree (4)	Strongly agree (5)
Q1. This instructional module for clinicians, persons with FDS and their caregivers is written in a simple and understandable language
Q2. This instruction module will provide a clear understanding of this condition and the steps that need to be taken for treatment
Q3. This instructional module provides information about FDS & how it is different from epilepsy
Q4. This instructional module motivates the person with FDS not to worry or feel guilty
Q5. Do’s and Don’ts mentioned in the instructional module are informative

FDS: Functional Dissociative Seizures

Participants

The instructional module was prepared using inputs from subject matter experts from neurology, psychology, and psychiatry with experience treating patients with FDS. The experiences of physicians were documented using a semi-structured interview schedule, and informed consent was obtained from all the participants.

Translation process

This module was prepared in English by KK and SS on the basis of previously available study of LaFrance et al.[15,16] Then the items were made by the inclusion of previous guidelines as well as based on the views of our clinical expertise. The translation from English to Hindi and the interpretation process were performed in accordance with the guidelines of the World Health Organization (https://terrance.who.int/mediacentre/data/WHODAS/Guidelines/WHODAS%202.0%20Translation%20guidelines.pdf), and it was done by forward translation into Hindi by two bilingual epilepsy researchers [Annexure I]. The new translation was assessed by the subject matter experts to compare its authenticity and validity against the original English version of the instructional module. This was done to thoroughly evaluate and find out if the version was good enough. Furthermore, changes were incorporated, so that the meanings of the translated items were expressed accurately. All-round quality of the translation was assessed by looking at the words, their meanings, and by the degree of how easy it was to understand them in Hindi. Thereafter, the experts suggested further changes after a discussion and consensus. The final outcome was a draft of the translated instructional module that was then handed over to another group of bilingual mental health professionals for back translation. These translators were blinded to the original English version of the instructional module. This translation process was holistic and not merely focused on correct semantics, but also on conceptual and cultural equivalence.

These back-translated versions were then compared to the English version of the instructional module by the subject matter experts, and the Hindi version was modified to get rid of any ambiguities. This revised version was then distributed to 30 members of the community and 30 FDS patients in an effort to improve the quality of translation. They were asked to complete a questionnaire to understand their comprehension of the module. Their feedback was taken, and appropriate changes were made to the module to improve the quality of text. These suggestions were reviewed and discussed by the experts, and the instructional module was finalized.

Validation of instructional module

The validation process comprised a panel of evaluators, including experienced neurologists and psychiatrists. The rating scales were sent to the 15 evaluators. These comprised 13 neurologists and two psychiatrists who had worked with patients with FDS. This process was undertaken to formulate a valid and user-friendly module, which could adequately address the needs of clinicians, patients, and caregivers. The evaluators received specific instructions to assess the relevance, completeness, understanding, readability, clarity, and usefulness of the module. Scoring was conducted on a 5-point Likert scale that ranged from 1 (strongly disagree) to 5 (strongly agree). Content validity ratio (CVR), content validity index (CVI), and modified kappa statistics were computed for validation of the Hindi FDS module.

Statistical analysis

CVR was estimated for all five questions under study using the formula CVR = (Ne - N/2)/N/2, where Ne is the number of panelists/experts who said the question under consideration is essential and N is the total number of panelists/experts in the study. There were five CVR estimates for every question. CVI was estimated by averaging all the obtained CVRs scores.[17,18]

The item-level CVI (I-CVI) for each question was estimated by dividing the number of experts marking the question as essential by the total number of experts in the study. The scale-level index of instrument (S-CVI) was estimated using the following two methods: first, universal agreement (UA) among all item experts (S-CVI/UA) and second, average the items’ CVIs (S-CVI/Ave). Modified kappa statistics (K_c) were estimated to obtain the interrater agreement for each question in scale, using the probability of chance agreement (P_c).[19]

Results

CVI for Q1, Q2, Q3, Q4, and Q5 estimated using the above-mentioned formula was 1, 0.86, 1, 1, and 1, respectively. Four items were totally agreed upon by all validators (Q1, Q3, Q4, Q5), while the remaining one (Q2) item was agreed by almost 86% of them. CVI in our study was 0.97, which is greater than the critical value of content validity for 15 panelists/experts (CVR_critical = 0.6).[20] Therefore, the test has demonstrated good content validity.

I-CVI for Q1, Q2, Q3, Q4, and Q5 estimated was 1, 0.93, 1, 1, and 1, respectively. S-CVI using S-CVI/UA was 0.8 and using S-CVI/Ave was 0.98. Then, to obtain modified kappa statistics, the probability of chance (P_c) was 1, 0.92, 1, 1, and 1, respectively, for Q1, Q2, Q3, Q4, and Q5. The modified kappa obtained shows that experts agreed with all the questions because the value of K_C for all questions was above 0.74.[21] The result outcome is shown in Table 2.

Table 2.

Items with content validation of the instructions sheet

Question number	CVR	I-CVI	P c	Kc	Interpretation
Q1	1	1	0.00003	1	Excellent
Q2	0.86	0.93	0.00045	0.92	Excellent
Q3	1	1	0.00003	1	Excellent
Q4	1	1	0.00003	1	Excellent
Q5	1	1	0.00003	1	Excellent

CVR: content validity ratio, I-CVI: item-level content validity index, Kc: modified kappa statistic, P_c: probability of chance agreement

Discussion

FDS are a neuropsychiatric condition which has been fraught with diagnostic and management challenges that lead to unnecessary medical expenditure incurred by the patients. Published management guidelines for FDS have given importance to proper diagnosis and communication of the diagnosis to the patient as a part of the treatment plan. Studies have found that taking psychoeducational sessions with the client during which the physician explains the diagnosis of FDS to the patients serves as a therapeutic tool in itself and can lead to a reduction in the seizure frequency.[13,22,23,24] Two guideline protocols have been published thus far that elaborate ways of communicating the diagnosis.[14,25] However, no protocol has been published for the Indian population yet.

The International League Against Epilepsy taskforce has laid down guidelines for the management of FDS, which has helped standardize its diagnosis and management to a considerable extent.[26,27] However, they do not address the unique cultural understanding of the illness that impacts the clinical manifestations and treatment. Religious–cultural beliefs surrounding FDS led to its portrayal as a condition brought upon by an external entity like God, ghosts, spirits, or induced by black magic.[28] Due to this, the physician is tasked with not just merely conveying the diagnosis, but also clarifying the etiology of FDS, which is a condition most likely caused due to psychologic factors. This study aimed to develop an instructional module in Hindi for Indian patients with FDS and their caregivers that focused on conveying the diagnosis, explaining the causes, management of anxiety, reducing stigma, and improving treatment adherence.

The present instructional module was found to yield high scores on CVI, that is, the values of the indicators were higher than the threshold.[19] Thus, the module covers relevant areas related to the construct. The interrater reliability was also found to be significant. The current module provides a structured way to broach the diagnosis and discuss other aspects related to the treatment or nature of illness. This module not only offers cues to the physician to clarify patients’ questions on most relevant issues surrounding the diagnosis, but also directs them toward more appropriate management without ridiculing the symptoms or taking them lightly.

There are some limitations in the present study. One major limitation is that the instructional module was prepared in Hindi language, which might not be applied for the people not living in northern India. This has been compiled using the suggestions and feedback of clinicians/physicians only.

This instructional module was prepared in Hindi to ensure accessibility to patients belonging to northern India and also assist clinicians to be better equipped to provide diagnostic clarifications to the patients and caregivers. This will also dispel the myths and misconceptions related to FDS and aim to open channels for further discussion regarding assessment and treatment.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

Annexure I (Supplementary)

Management of Functional dissociative Seizures (FDS)

Guidelines for Clinicians, Patients, and Their Caregivers (English)

Index

1. Note for the clinicians

2. Instructions for Persons with Functional Dissociative Seizures (FDS) and their caregivers

3. References

Note for Clinicians

(LaFrance et al., 2013; LaFrance et al., 2013; Reilly et al., 2021)

The following points should be kept in mind while counseling/conveying a diagnosis of psychogenic nonepileptic seizures (FDS) to the patients and their caregivers:

1. If possible, please communicate with the patient in the presence of a family member.

2. Patients should be strongly encouraged to bring along a family member when the diagnosis is being discussed, since caregivers can help take in what the doctor has to say and reinforce this information to the patient.

3. Patients with FDS can be reluctant to accept that their apparently physical disorder is psychologic in nature. However, experience suggests that the clinician’s level of comfort in explaining the condition is likely to impact the level of acceptance by the patient and their family. Therefore, the diagnosis should be conveyed in a manner that is empathetic and understanding.

4. It is important to note that even patients whose FDS stop (at least temporarily) may still need further active psychologic or psychiatric treatment. This is because cessation of seizures alone may not improve any underlying psychologic distress, associated psychiatric comorbidity, and the overall health-related quality of life.

5. A history of trauma, abuse, bullying, stress, or unresolved emotional issues can be found in up to 80% of patients with FDS, and a patient may often divulge this history in an examination where current and past stressors are assessed in a systematic and empathetic manner.

6. Some counseling strategies to be used for caregivers of FDS patients:

   1. Educate them for its nature, and how it differs from epileptic seizures. Explain that FDS are psychologic conditions often triggered by emotional or psychologic factors, not abnormal brain activity.

   2. Stress on the fact that they are attacks (daura) not originating due to abnormal electrical activity, but due to stressors which affect the chemistry in the brain, and different people deal with them in different ways – some speak about them/discuss with others/cry out loud, while for some who are not able to deal with them, they manifest in ways such as FDS. It is not merely something that the patient is making up consciously, especially emphasize on this while discussing with the caregivers.

   3. Actively listen to their questions and feelings. Validate their emotions, as caring for someone with FDS can be emotionally challenging.

   4. Teach caregivers stress management techniques, as caring for someone with a chronic condition can be stressful. Encourage them to prioritize self-care and seek support for themselves as needed.

   5. Establish trust: Building a strong therapeutic alliance based on trust and respect is essential. FDS patients may have experienced stigma or misunderstanding regarding their condition, so it is crucial to create a safe and non-judgmental space.

   6. Address and challenge any stigma associated with mental health conditions, including FDS. Provide psychoeducation to patients and their families to help them understand the condition and its treatment.

   7. Use evidence-based counseling modalities such as cognitive–behavioral therapy (CBT) and psychodynamic therapy, tailored to the patient’s cultural background and needs. These therapies can help patients explore and address the emotional issues or trauma that may be triggering their seizures.

   8. Family counseling: Involving family members in counseling can help them understand the condition and its impact on the patient’s life. It can also provide strategies for supporting their loved one.

   9. A comprehensive psychologic assessment is essential to identify any underlying emotional or psychologic factor that may be contributing to the seizures. This assessment can help determine the most appropriate treatment approach.

   10. Stress management: FDS patients often benefit from learning stress management techniques. This may include relaxation exercises, mindfulness, and coping strategies to reduce the impact of stress on their condition.

   11. Supportive therapy: Providing emotional support is crucial for FDS patients. Counseling can help them develop a support network and strategies for dealing with the emotional challenges of living with a condition that is often misunderstood.

Instructions for Persons with Functional Dissociative Seizures (FDS) and their Caregivers

Dear patient,

You have been diagnosed with a condition known as FDS. This instruction sheet will provide you with a clear understanding of this condition and the steps you should take for treatment.

What are FDS?

The episodes or “seizures” you are experiencing are not caused by epilepsy, instead they are caused by emotional or psychologic issues. These types of seizures are called psychogenic nonepileptic seizures or FDS; in most cases, they are related to upsetting emotions about which you may be unaware. You should tell your treating doctor about any past history of abuse/trauma or any present stressful events that may be triggering these episodes. However, it can be difficult to identify the stressors that are causing these seizures.

How do we know it is FDS and not epilepsy?

Your clinician has made this diagnosis after thoroughly reviewing the findings from either or all these sources – a video electroencephalograph test, a homemade video of the attack, or your description of the seizure. While recording these seizures, the recording of the electrical activity of your brain was normal. Your doctor will explain further how they reached these conclusions.

Should I be worried?

Diagnosis of FDS and not epilepsy is a good news! It means you do not have an underlying neurologic condition. Worrying about your condition will only worsen the seizures or make them more frequent.

Should I feel ashamed?

No! There is no need to feel guilty or ashamed. You are not “crazy” or “mad” because you are having these episodes, nor are you suspected of causing them on purpose. FDS are common and recognized conditions which are treatable. Between 5% and 20% of the people who visit the epilepsy clinic have FDS.

What about my treatment?

Since your seizures are not caused by epilepsy, drugs that treat epilepsy will not work, in fact they may cause serious side effects. You should instead consult a psychiatrist, psychologist, or counselor for treatment. Counseling may not control the seizures immediately, but seizures can improve as the treatment, including CBT, progresses. Even though seizures are not under your conscious control, you can learn to control them with the help of a therapist. There is no role of unproven traditional cures in this disorder and in fact, these may make the episodes more frequent.

It is important to note the following points related to your treatment:

• If you have been taking anti-seizure medications (ASMs), the medications will be gradually withdrawn under medical supervision. Please do not stop these ASMs on your own, as it may cause serious side effects.

• More seizures may occur before complete control is achieved.

• Please make sure that you continue to visit your neurologist at regular intervals.

• Do not forget to visit your neurologist, psychiatrist, or psychologist, as advised by your treating doctor.

Instructions for caregivers:

• Please keep the patient in a comfortable seated or reclined position during the episodes.

• Do not try to change the patient’s posture during these episodes.

• Do not try to offer food, water, or medications to the patient as it could be a choking hazard.

• Do not panic and crowd around the patient, but ensure their safety. Leave the patient and do continue your activity and tasks in the same room. Do not give undue attention.

• Try to make a video of the event to share with the doctor, without focusing too much on the patient.

• Write down when each event happens and how often it occurs.

References

1. LaFrance WC Jr, Reuber M, Goldstein LH. Management of psychogenic nonepileptic seizures. Epilepsia. 2013;54 Suppl 1:53–67. doi: 10.1111/epi.12106

2. Duncan R. Psychogenic nonepileptic seizures: diagnosis and initialmanagement. Expert Rev Neurother. 2010;10(12):1803–1809. doi: 10.1586/ern.10.171

3. Mellers JD. The approach to patients with “non-epileptic seizures”. Postgrad Med J. 2005;81 (958):498–504. doi: 10.1136/pgmj. 2004.029785

4. Hall-Patch L, Brown R, House A, et al. Acceptability and effectiveness of a strategy for the communication of the diagnosis of psychogenic nonepileptic seizures. Epilepsia. 2010;51(1):70–78. doi: 10.1111/j.1528-1167.2009.02099.x

5. Shen W, Bowman ES, Markand ON. Presenting the diagnosis of pseudoseizure. Neurology. 1990;40(5):756–759. doi: 10.1212/wnl.40.5.756

6. LaFrance Jr WC, Baker GA, Duncan R, Goldstein LH, Reuber M. Minimum requirements for the diagnosis of psychogenic nonepileptic seizures: a staged approach: a report from the International League Against Epilepsy Nonepileptic Seizures Task Force. Epilepsia. 2013 Nov; 54(11):2005-18

7. Reilly C, Jette N, Johnson EC, Kariuki SM, Meredith F, Wirrell E, et al. Scoping review and expert-based consensus recommendations for assessment and management of psychogenic non-epileptic (functional) seizures (PNES) in children: A report from the Pediatric Psychiatric Issues Task Force of the International League Against Epilepsy. Epilepsia. 2023 Dec;64(12):3160-3195.

गैरमिरगी-संबंधीदौरे (FDS) का चिकित्सकों, मरीजों और उनकी देखभाल करने वालों के लिये प्रबंधन तथा दिशा-निर्देश (हिंदी में)

(HINDI GUIDELINES FORMULATED FOR PATIENTS, CLINICIANS, AND CAREGIVERS)

सूची:-

1. चिकित्सकों के लिए नोट (निर्देश)

2. रोगियों के लिए निर्देश

3. संदर्भ (References)

चिकित्सकों के लिए निर्देश

(LaFrance et al .,2013, LaFrance et al ., 2013; Reilly et al .,2021)

रोगियों और उनकी देखभाल करने वालों (Caregivers) को गैरमिरगी-संबंधीदौरे (FDS) का निदान बताते/परामर्श देते समय निम्नलिखित बातों को ध्यान में रखा जाना चाहिए:

1. यदि संभव हो, तो कृपया परिवार के किसी सदस्य की उपस्थिति में रोगी से बात करें।

2. जब निदान पर चर्चा की जा रही हो तो मरीजों को परिवार के किसी सदस्य को साथ लाने के लिए प्रोत्साहित किया जाना चाहिए क्योंकि देखभाल करने वाले डॉक्टर को जो कहना है उसे समझने में मदद कर सकते हैं और रोगी को इस जानकारी को सुदृढ़ कर सकते हैं।

3. पीएनईएस वाले मरीज़ यह स्वीकार करने में अनिच्छुक हो सकते हैं कि उनका स्पष्ट शारीरिक विकार असलियत में मनोवैज्ञानिक है। हालाँकि, अनुभव से पता चलता है कि स्थिति को समझाने में चिकित्सक की सहजता का स्तर, रोगी और उनके परिवार द्वारा स्वीकृति के स्तर को प्रभावित करता है। इसलिए, रो ग के निदान को सहानुभूतिपूर्ण तरीके से व्यक्त किया जाना चाहिए।

4. यह ध्यान रखना महत्वपूर्ण है कि जिन रोगियों के दौरे बंद हो जाते हैं (कम से कम अस्थायी रूप से) उन्हेंें, अभी भी आगे मनोवैज्ञानिक या मनोरोग उपचार की आवश्यकता हो सकती है। ऐसा इसलिए है क्योंकि सिर्फ दौरे बंद करने से किसी भी मनोवैज्ञानिक संकट, संबंधित मानसिक समस्या और जीवन की स्वास्थ्य संबंधी गुणवत्ता में सुधार होना आवश्यक नहीं है।

5. गैरमिरगी-संबंधी दौरे (FDS) के 80% रोगियों में आघात, दुर्व्यवहार, धमकाने, तनाव या अनसुलझे भावनात्मक मुद्दों का इतिहास (history) पाया जा सकता है और रोगी अक्सर इस इतिहास को भेंटवार्ता में प्रकट कर सकता है । वर्तमान इसलिए और पिछले तनावों का व्यवस्थित रूप से और सहानुभूति ढंग से । से मूल्यांकन किया जाना चाहिए।

गैरमिरगी-संबंधीदौरे (FDS) वाले मरीजों की देखभाल करने वालों के लिए उपयोग की जाने वाली कुछ परामर्श रणनीतियाँ

1. मरीजों को सिखाएं कि उनके हालत क्या है और यह मिर्गी के दौरे से अलग कैसे है। बताएं कि FDS (गैरमिरगी-संबंधीदौरे) एक मानसिक समस्या है, जो भावनात्मक या मानसिक कारणों से होती है, ना कि दिमाग की असामान्य गतिविधि से।

2. समझाएं कि FDS दौरे दिमाग में इलेक्ट्रिक गड़बड़ी से नहीं, बल्कि तनाव से होते हैं। लोग अलग-अलग तरीकों से तनाव से निपटते हैं-कुछ लोग बात करके या रोकर अपनी भावनाएं व्यक्त करते हैं, और जो इससे नहीं निपट पाते, उनके FDS जैसे दौरे हो सकते हैं। यह कुछ ऐसा नहीं है जिसे मरीज जानबूझकर कर रहे हैं, खासकर जब देखभाल करने वालों से बात कर रहे हों, इस पर जोर दें।

3. उनकी (मरीज की) बात सुनें और उनके सवालों और भावनाओं पर ध्यान दें। उनकी भावनाओं को समझें, क्योंकि FDS वाले किसी व्यक्ति की देखभाल करना मुश्किल हो सकता है।

4. देखभाल करने वालों को तनाव प्रबंधन सिखाएं, क्योंकि लंबे समय तक किसी बीमार व्यक्ति की देखभाल करना तनावपूर्ण हो सकता है। उन्हें खुद की देखभाल करने और ज़रूरत पड़ने पर मदद मांगने के लिए प्रेरित करें।

5. विश्वास बनाएं: विश्वास और सम्मान पर आधारित एक मजबूत संबंध बनाना जरूरी है। FDS मरीजों को अपनी स्थिति को लेकर शर्मिंदगी या गलतफहमी हो सकती है, इसलिए एक सुरक्षित और समझने वाला माहौल बनाएं।

6. मानसिक स्वास्थ्य से जुड़े कलंक को चुनौती दें: मानसिक स्वास्थ्य संबंधी किसी भी गलतफहमी को दूर करें। मरीजों और उनके परिवार को उनकी स्थिति और इलाज के बारे में समझाएं।

7. मरीज की संस्कृति और ज़रूरतों को समझते हुए, वैज्ञानिक तरीके से परामर्श [जैसे Cognitive Behavior Therapy (CBT) और साइकोडायनामिक थेरेपी] का इस्तेमाल करें। ये इलाज मरीजों को उनके भावनात्मक समस्याओं या मानसिक सदमे को पहचानने और हल करने में मदद कर सकते हैं, जो उनके दौरे (सीज़र्स) शुरू होने का कारण हो सकते हैं।

8. पारिवारिक परामर्श: परिवार को भी परामर्श में शामिल करें, ताकि वे स्थिति को बेहतर समझ सकें और मरीज की मदद कर सकें।

9. मानसिक और भावनात्मक कारणों की जांच करें: एक विस्तृत मानसिक मूल्यांकन करें ताकि उन कारणों की पहचान हो सके जो दौरे का कारण बन रहे हैं, और सही इलाज का निर्णय लिया जा सके।

10. तनाव प्रबंधन: ऐसे मरीजों के लिए तनाव प्रबंधन तकनीकें जैसे ध्यान (Meditation) और आराम-अभ्यास (relaxation exercises)सीखना फायदेमंद हो सकता है, ताकि वे अपनी स्थिति से होने वाले तनाव को कम कर सकें।

11. भावनात्मक समर्थन: मरीजों को भावनात्मक समर्थन देना जरूरी है। परामर्श से उन्हें उनकी स्थिति के साथ रहने की चुनौती से निपटने के लिए एक सहायक नेटवर्क और रणनीतियां विकसित करने में मदद मिलेगी।

कार्यात्मक विघटनकारी दौरे (FDS) वाले व्यक्तियों और उनकी देखभाल करने वाले व्यक्तियों के लिए निर्देश

प्रिय रोगी,

आपके डॉक्टर ने पूर्ण जाँच के बाद यह परिणाम निकाला है की आपको मन से उत्पन्न होने वाले, गैर मिरगी-संबंधी / कार्यात्मक विघटनकारी दौरे (FDS) दौरे पड़ते हैं। इन दौरों को चिकित्सक, साइकोजेनिक नॉन-एपिलेप्टिक दौरे या फिर पी.एन.इ.एस. या कार्यात्मक विघटनकारी दौरे (FDS). के नाम से बुलाते हैं।आपकी सुविधा के लिये, इस दिशा निर्देश में इन दौरों के बारे में सही तथा पूर्ण जानकारी व इलाज संबंधी सूचना दी गई है।

कार्यात्मक विघटनकारी दौरे (FDS)-संबंधी क्या होते हैं?

ये दौरे मिरगी की वजह से नहीं, बल्कि दुखी मन, चिंता या किसी भी तरह के मानसिक तनाव के कारण पड़ते हैं। इस प्रकार के दौरे को साइकोजेनिक गैरमिरगी-संबंधी दौरा// कार्यात्मक विघटनकारी दौरे (FDS) कहा जाता हैं। और ज्यादातर मामलों में, वे परेशान भावनाओं से संबंधित होते हैं जिनके बारे में आप अनजान हो सकते हैं। इसलिए यह आवश्यक है कि आप अपने उपचार करने वाले डॉक्टर को घटना या चिंताजनक वारदात के बारे में या पूर्व की तनावपूर्ण घटनाओं के बारे में बताएं। ऐसा भी हो सकता है कि इन दौरों के लिए जिम्मेवार तनाव-पूर्ण परिस्थितियां पहचान में न आ पाएं।

किस आधार पर कह सकते हैं कि यह दौरे मिरगी के नहीं?

आपके डॉक्टर ने रोगी का जाँच:घर पर बनाया हुआ वीडियो (Video), परीक्षण, या फिर दौरे के विवरण से यह परिणाम निकाला है कि रोगी को पड़ने वाले दौरे मिरगी के झटके नहीं हैं। इन दौरों को दर्ज करते समय, आपके मस्तिष्क की कोशिकाएं सही तरीके से काम कर रही थी।

आपके डॉक्टर आपको और विस्तार से समझायेंगे कि वे अपने निष्कर्ष पर कैसे पहुंचे।

क्या मुझे चिंतित होना चाहिए?

यह सुखद समाचार है की आपको मिरगी के दौरे नहीं बल्कि मन से उत्पन्न होने वाले दौरे पड़ते हैं। इसका मतलब यह हुआ कि आपको कोई मष्तिस्क रोग नहीं है। कृपया दौरों को लेकर और चिंता न करें, ऐसा करने से दौरों की संख्या व गंभीरता बढ़ सकती है।

इस बीमारी के बारे में चर्चा करने से मुझे शर्मिंदगी महसूस होती है| इसका कोई उपाय?

नहीं! खुद को दोषी समझने या शर्म/शर्मंदगी महसूस करने की कोई आवश्यकता नहीं है। इसका मतलब यह नहीं की आप ‘पागल’ हैं या अपना मानसिक संतुलन खो चुके हैं। हमे पता है के आप ये जानबुझ कर नहीं कर नहीं कर रहे है। इस प्रकार के दौरे पड़ना सामान्य बात है, और मिरगी का इलाज कराने आये 5-20% मरीज़ों को इस तरह के दौरे पड़ते हैं।

इन दौरों का इलाज कैसे किया जाये?

क्योंकि आपके दौरे मिर्गी के कारण नहीं होते हैं, मिर्गी का इलाज करने वाली दवाईयां रोगी की मदद नहीं करेंगी, वास्तव में वे बहुत अधिक नुकसान/दुष्प्रभाव पैदा कर सकती हैं। हम सावधानीपूर्वक निगरानी के साथ इन दवाओं को धीरे-धीरे कम करेंगे। इसके बजाय आपको उपचार के लिए मनोचिकित्सक, मनोवैज्ञानिक या फिर परामर्शदाता/सलाहकार से परामर्श करना चाहिए। कॉग्निटिव बेहवियरल थेरेपी (CBT) और कुछ दवाओं के आधार से इस बीमारी पर नियंत्रण पाया जा सकता है।इस बीमारी में झाड़-फूक, नुस्खे या अप्रमाणित औषधों की कोई भूमिका नहीं है और इन से ये दौरे बढ़ भी सकते है।

आपके उपचार से संबंधित निम्नलिखित बातों पर ध्यान देना आवश्यक है:

• यदि मरीज़ की मिरगी की दवा चल रही हो तो उसे खुद से बंद ना करें, ऐसा करने पर मरीज़ को नुकसान हो सकता है। यह दवाएं धीरे-धीरे ही घटाई जाएँगी।

• पूर्ण नियंत्रण हासिल करने से पहले अधिक दौरे पड़ सकते हैं।

• अपने न्यूरोलॉजिस्ट (मिरगी के डॉक्टर)को नियमित अंतराल पर मिलते रहे।

• आपके चिकित्सक द्वारा दी गई सलाह के अनुसार, अपने न्यूरोलॉजिस्ट, मनोचिकित्सक या मनोवैज्ञानिक से मिलना न भूलें।

देखभाल करने वालों के लिये निर्देश/सलाह:

1. कृपया दौरे के दौरान, मरीज़ को आरामदायक स्थिति में बैठाएं या लेटी हुई स्थिति में रखें।

2. इन घटनाओं के दौरान मरीज़ की मुद्रा बदलने की कोशिश न करें।

3. मरीज़ों को भोजन, पानी या दवाएँ देने की कोशिश न करें क्योंकि इससे दम घुटने का ख़तरा हो सकता है।

4. घबराएं नहीं और मरीज़ के चारों ओर भीड़ न लगाएं, उनकी सुरक्षा सुनिश्चित करें।

5. मरीज को छोड़ दें और कमरे में अपनी गतिविधियाँ और काम करते रहें। ज्यादा ध्यान न दें।

6. मरीज को बिना ज़्यादा ध्यान दिए, इस घटना की वीडियो बनाने की कोशिश करें ताकि डॉक्टर को दिखा सकें।

7. दौरा कब और कितनी बार हुआ, यह डायरी में लिख लें।