ALTERNATIVE MEDICINE IN PATIENTS WITH EPILEPSY IN SANTA CATARINA, SOUTHERN BRAZIL

ALTERNATIVE MEDICINE IN PATIENTS WITH EPILEPSY IN SANTA CATARINA, SOUTHERN BRAZIL

Paulo Cesar Trevisol-Bittencourt, MD, MSc *
Victor Reis da Silva, MD**
Luiz Roberto Hilbert Ferreira, MD***
André Ribeiro Troiano, MD****
* Professor of Neurology Federal University of Santa Catarina
**Resident on Neurosurgery University of Toronto/Canada
***Psychiatrist Hospital Regional de São José
****Resident on Neurology Federal University of Paraná
Address:
Dr. Paulo César Trevisol Bittencourt
Universidade Federal de Santa Catarina
Hospital Universitário – Centro de Estudos
88040 – 900 Florianópolis, SC – Brazil
pcb@neurologia.ufsc.br
http://www.neurologia.ufsc.br

 SUMMARY

 The state of Santa Catarina is the smallest in southern Brazil. It has around five millions inhabitants, most of them descendants from Portuguese – especially from Azorean Islands, Italian and German immigrants. There are many minorities, the most numerous beings are native Indians and afro-Brazilians. We wished to elucidate the use of alternative medicine in this mixed population. The study was performed at the Multidisciplinary Clinic for Epilepsy, NHS, Florianópolis/SC. In 1993, questionnaires were sent to adult patients suffering from chronic active epilepsy, and their relatives to ascertain whether they had sought treatment from medical practitioners of religious institutions or leaders or, had used home remedies. Moreover, we made specific observations concerning the racial group of the patients to connect cultural influences among a population with the same condition but with different ethnic background. Roughly 60 % of sample had tried alternative treatments for epilepsy in the past. The lack of knowledge about epilepsy and its phenomenology was similar in most people, which may explain the wide use of alternative medicine that was observed. Religious leaders were the main source of alternative therapy. Spiritualism, Alan Kardec type, was the favourite religion. Medium, supposed to be a person with special powers, was the principal practitioner. Most of treatments ranged from blessing, home remedies, prayers to spiritual surgery.

Key words: epidemiology, epilepsy, alternative medicine

RESUMO

A despeito de todo o progresso científico observado nas últimas décadas, a epilepsia e os sintomas a ela relacionados, ainda estão envoltos numa nuvem de mistério para a maioria da população. Toda condição crônica frequentemente leva à busca de tratamentos alternativos. Nós desejamos, com este estudo, elucidar o uso de medicina alternativa pelos usuários da Clínica Multidisciplinar de Epilepsia, do Sistema Único de Saúde, em Florianópolis/SC. Em 1993, foram enviados questionários para pacientes adultos sofrendo de epilepsia crônica ativa e a seus parentes. Procurou-se identificar se houve procura por tratamentos oferecidos por membros ou líderes de instituições religiosas ou se houve uso de remédios caseiros. Além disso, nós observamos, mais especificamente, o grupo racial dos pacientes na tentativa de conectar influências culturais entre a população com a mesma condição, mas passado étnico diferente. Aproximadamente 60% da amostra tentou tratamentos alternativos para epilepsia no passado. A falta de conhecimento sobre epilepsia e sua fenomenologia foi similar para a maioria das pessoas, o que pode explicar o vasto uso de medicina alternativa observado. Líderes religiosos foram a fonte principal de medicina alternativa. O Espiritismo, tipo kardecista, foi a religião favorita. O médium, pessoa supostamente com poderes especiais, foi o principal praticante. Os tratamentos mais comuns foram bençãos, remédios caseiros, passes e cirurgias espirituais.

Palavras-chave: epidemiologia, epilepsia, medicina alternativa

 INTRODUCTION

Every chronic condition frequently leads to a search for alternative treatments. Such statement could be confirmed in any society, independently from its level of development. As some forms of epilepsy have tendency to develop into a chronic condition they can be considered within this context.

On the other hand, we should recognise that despite all the scientific progress observed in the last decades, the epilepsies and the phenomena related are still surrounded by a mysterious mist for the majority of the population, mainly in developing countries3,7,9,14,17.

There is a rich world wide folklore about this condition, most likely influenced by religion culture, contributing for that epileptic seizures keep on suffering misleading interpretations in the most different societies. However, such cultural distortion is not exclusive of the lay population, paradoxically, many conventional physicians have also a precarious level of information on epilepsy2,13. As a matter of fact, to confirm this, it would be enough only to pay a visit to any modern epilepsy clinic. In it, independently what country they are located, we would have among its patients an expressive number of individuals mutilated by bizarre drug therapies used in the past and disastrous surgeries in the present12.

Nevertheless, contributing for the end of mystification on epilepsy, recent epidemiological studies have revealed a distinct face from the one we inherited from our ancient teachers: a severe and lifetime condition. It is accepted today that except for the malignant types of epilepsy, a highly remission rate of symptoms can be observed in the majority of these patients. It is somewhat remarkable that nearly 80% of the patients tend to go into remission along the years10,11,17. It is most likely that this epidemiological detail be the best explanation to justify the fame held by many of the professional healers of epilepsy. A famous ancient Hindu proverb says “the medicine is the art of entertaining the disease while mother nature plays its role”. The popular wisdom may be applying intuitively this concept along the centuries.

On the other hand, we ponder that to study the alternative ways of treatment in a given society, considering the worst hypothesis, it would contribute to improve our knowledge level of the aimed population. Besides, it would allow us to identify methods, frankly odd, without any prudence, that would be contributing for the deterioration of the individuals with epilepsy. For example, it is abominable that at the beginning of the third millennium, epilepsy is still being considered as symptom of devilish possession by some alternative therapists, adherent to distinct creeds in many societies around the world. Information in overdoses seems to be the only remedy able to minimise the effects of ignorance, generator of prejudices.

However, it is equivocal to consider us self sufficient and holders of the knowledge monopoly in this field. We, conventional physicians, and supposedly scientific, should strip us off of any pretension of intellectual superiority and learn a little with the alternative epileptologists. Just a quick brush up on the history of medicine to recognise several alternative practices transformed into conventional ones for having proved results. The opposite has also been true, with several conventional practices being put aside after a while and … many victims. Particularly, the history of epilepsy offers us a wide number of procedures, formerly recommended by conventional physicians, that nowadays can be considered an insult to human intelligence1,4,5,6. A criterious analysis of the current approaches, enables us to foresee a similar destiny in a short time for some of the therapeutics named scientific19. Moreover, many of us have experience with drugs presented as anti-epileptic panacea, which just after few years of use revealed to be a fraud.

Besides, we should also take into account, that modern life is somewhat neurotic; and in fact, a not despicable number of us, as the years go by, have turned into neuroticologist, and similarly to several psychiatrics disguised as psychiatrists, started to show neurotic symptoms in varied levels. Many of us are getting more and more inpatient and consequently establishing fragile doctor-patient relationships. Practitioners, disposing more time and patience, and sometimes more well educated, tend to develop a more gratifying relationship with these peculiar patients and their relatives.

Finally, it is necessary to have in mind the intriguing suggestion brought by the epidemiology, that the remission of symptoms can be spontaneous10,16,18. It is unnecessary for its obvious character, to run through the importance of this aspect in the success of any therapeutic proposal.

METHODS

The multidisciplinary Clinic for Epilepsy, National Health Service (NHS), Florianópolis/SC was founded in 1990. It is dedicated to out-patient assistance of nearly 2000 patients with diverse epilepsies coming from all over Santa Catarina state. It is the only specialised clinic of epileptology in our state working for the NHS. Most of these patients have its origin in the urban working class with high school level. The clinic grants facilities of access to several neurophysiological and neuroimage resources. The access to anti-epileptic drugs (AEDs) prescribed are free and its supplying is on a regular basis. Monotherapy with major AEDs is the main therapeutic principle.

From this population it was randomly selected 100 adult patients with resistant partial epilepsies to proper medication. Through individual approach, all these patients and relatives answered to an ample questionnaire with the purpose of detecting the search for alternative treatments in the past. It was tried to identify who recommended alternative medicine and which type of therapy was employed. Alternative medicine (AM) for epilepsy was defined as any treatment in disagreement with the modern scientific approach of this condition. Despite this, bizarre drug therapies prescribed in the past by conventional physicians, easily identified, were not considered as alternative medicine. However, homeopathy and acupuncture were also include as part of the alternative arsenal.

RESULTS

Table I – Characteristics of the sample

Users of AM

Nonusers of AM

N

%

N

%

Male

27

(44)

25

(64)

Female

34

(56)

14

(36)

Mean age

29.3

(range 18-57)

27.8

(range 19-54)

Scholarship

Illiterate

04

(06)

01

(03)

Elementary

09

(15)

06

(15)

High school

45

(74)

25

(64)

University

03

(05)

07

(18)

Income

Low income

06

(10)

02

(05)

Middle income

51

(84)

32

(82)

High income

04

(06)

05

(13)

Total

61

39

61 patients were into alternative medicine trial

– 12 patients suppressed previous AEDs treatment

– 35 patients paid for the alternative treatment

– 26 patients had alternative medicine as the first treatment for their seizures

Table II – Opinion about the alternative experience

Very bad

03

Regular

09

Good

49

The most eccentric prescriptions by alternative therapists

Skunk oil

Fried pig testicle

Black Chicken excrement tea

Table III – Alternative medicine practioners and treatment methods

SPIRITUALISTIC MEDIUM – 61 patients

Spiritual surgery, energy transmissions, holy remedies

CATHOLIC PRIEST – 49 patients

Blessing, prayer, herbs infusion, home remedies, exorcism (02 patients)

MEDICINE MAN – 47 patients

Herbs infusion, special diet for epilepsy, blessing, prayer

PENTECOSTAL PASTOR- 44 patients

Exorcism (15 patients), holy remedies, blessing, prayer

“CANDOMBLÉ” MEDIUM – 09 patients

Voodoo practice

CONVENTIONAL DOCTORS – 08 patients

Homeopathy (7 ), acupuncture (1)

Table IV – Distribution of patients according cultural/racial background and search for AM

N

YES

NO

Miscigenated

43

31

12

Portuguese

24

13

11

German

16

07

09

Italian

13

08

05

Afro-Brazilian

03

01

02

Spanish

01

01

00

Total

100

61

39

Table V – Distribution of patients according religion and search for AM

N

YES

NO

Catholic

69

41

28

Pentecostal

07

06

01

Lutheran

04

00

04

Spiritist

03

03

00

Agnostics

17

11

06

Total

100

61

39

DISCUSSION

Epilepsy is a highly stigmatising neurological disorder in our society8,12,13 and its prevalence as active condition in our state is estimated in 1.2/10014. Partial epilepsies are the commonest presentation, and head trauma, cysticercosis and febrile convulsion are the main aetiologies15. Many of these patients will develop epilepsy as a chronic condition. Besides, it is still very strong in our society the interpretation of the epileptic phenomenology as an expression of spiritual disturbance. Such fact, most likely, has its origin in the religious teachings. Because the bible has passages suggesting the demon as aetiology of epileptic seizures, and considering that nearly 100% of our population, receives basic concepts of Christian religions during childhood, we naturally observed that an expressive percentage of our patients have sought help in alternative practices in the past and the majority of them have been recommended by religious leaders.

Despite the design of our survey does not allow us to conclude about the efficiency of such treatments, it was remarkable to note that the vast majority of the clients have mentioned a feeling of well being during the treatments. Anyway, we could notice that the patients kept having seizures. In an analogous way, all of us physicians, have patients that despite the fact of not having healing for their problems, they mentioned a feeling of well being under our care. It is very likely that this only reflects a good relationship established between patient and therapist, resulting in better psychological comfort and tolerance to the disease symptoms. Unfortunately, many physicians nowadays seem to disdain the importance of a good relationship with their patients. Dominated by the huge technological progress, many physicians forget that the best complementary exam is the clinical examination and usually do not touch their patients. On the other hand, alternative therapists do not ask for complementary exams and focus their attention toward the patients’ complaints. This characteristic is probably responsible for the great acceptance they get.

However, at least in one of the patients it was possible to identify a side effect of serious consequences. She developed status epilepticus during homeophatic treatment, whose doctor responsible had recommended the suppression of the AED that she was taking. Although, it has been an isolated case, such fact suggests that alternative treatments do not lack risks.

Concerning the racial/cultural and economical classification of the patients we did not observe any substantial difference between them. All individuals looked for similar alternative treatments no matter their cultural/racial classification or financial level. We interpreted this fact as an expression of a social and cultural integration that is developing itself among the people coming from different european tribes, having the same educational values.

On the other hand, we thought that the professed religion could be a determinant element in the selection of the alternative treatment. This was not confirmed. Concerning different professed religions, the search for non-conventional therapies did not follow any religious criteria. The sample showed the majority of the patients as members of the roman catholic church. However, many of the individuals chose therapists linked to another religions or sects, even individuals not connected to any religion. In this aspect, it should be mentioned that the only four patients belonging to the Lutheran credo never accepted alternative treatment. Of course, this does not allow any definite conclusion, although it would be interesting to focus this aspect in further surveys.

Nevertheless, it was curious to verify that all 61 patients had previous therapeutical experiences in spiritism centres. Differently from other regions of Brazil, where there is a marked influence of African and native Indians rites, the spiritism centres of our state follow basically the ideas of their French mentor, Alan Kardec. Centres of this nature, present themselves to the society as a kind of panacea: clarifying, justifying and treating all illnesses; spreading among its participants the conformist idea that the present health problems are consequences of past lives. Summarising, the present disease is a life product of yesterday and tomorrow will be the consequence of what you did or neglected to do today. Such centres have as a powerful therapeutic tool what they call spiritual surgery. In this way, it is very likely that publicity around successful surgical approach of epilepsy nowadays, and the absence of a surgical centre for epilepsy in our state, be the reason why many patients search for spiritual surgeries as valid alternatives. The given surgery follows an analogous rite of the real surgeries, where the medium is a kind of chief surgeon. This one, after several minutes of concentration in which there is a benign possession by the spirit of a famous, already dead, conventional doctor, usually begins the work with unclear words been pronounced. Supposedly, these words come from the mother tongue of the dead doctor, once not all the possessors are Brazilians. Dressed in white and holding a surgery knife, the medium pretends to cut the skull and gestures as if he or she were actually extracting something from inside the patient’s skull. Within some minutes the operation is ended and the nursing tasks are responsability of the attendants. It is recommended some rest for days, according to the seriousness of the intervention performed. It must be emphasised that all our patients have undergone such kind of therapeutic. Besides a brief psychological relief mentioned by all the patients, any other benefit was cited. However, one patient seems to have developed an unusual form of Munchausen syndrome, because he had undergone eleven spiritual surgeries so far.

Yet in the religious aspect, it was depressing to observe that exorcism is a method used in the alternative treatment for epilepsy in many individuals in our state. Traditionally in the past, the catholic religion had the monopoly of this therapeutic measure. Unfortunately, when it seems that such measure is been forgotten, some fashionable pentecostal sects, with not well disguised financial interests, strongly invest in its maintenance.

The misinterpretation of epileptic phenomena as symptom of demoniac possession is extremely frequent not to be considered. We do not agree that the ignorance is the yeast of the religions in general, however, we believe that religious principles in small dosage could be a good remedy, but, overdoses can produce serious poisoning, preventing the people to identify the origin of their existential problems and how to solve them.

In order to minimise the great influence of such alternative methods in our society, mainly the ones coming from anachronic religious inspiration, the diffusion of the knowledge acquired by the modern epileptology seems to be the only efficient alternative. However, to be successful in this purpose, it is imperative the creation of multidisciplinary clinics in the major cities of our state. This statement can be justify by the following data: at the present moment there is only one clinic linked to the NHS out of 198 kardecist spiritism centres throughout the state. Pentecostal temples with strong financial appeal are in superior number. So, we can conclude that it is much easier to get an opportunity in those alternative clinics. The actual relation reflects an unbalanced competition, allowing us to foresee that, unfortunately, still for some more decades the symptoms of epilepsy will be misunderstood as originated from demoniac possession or a signal of mediunistic power, as kardecists say the ability to incorporate spirits from beyond. Such task would be easier if conventional physicians had a good epileptology formation, but unfortunately they use to show a precarious knowledge about this so common condition2,12 and not rarely they are also in favour and users of such alternative practices12. Moreover, we should remember that at least 7 patients were into homeophatic treatment in the past and they paid for that. We could infer that probably this kind of practice is higher among patients from upper class.

Finally, we would like to mention the intriguing suggestion brought by the modern epidemiology that the high remission rate observed in patients with epilepsy could be spontaneous10,15,17. In this way, most likely at long term, alternative healers would have success rates similar to ours, but without the inconvenience of the frequent undesirable effects of the current AEDs. However, there can be negative psychological consequences when epileptic seizures are assumed as symptom of paranormality or spiritual disturbance, and this should not be neglected. Decreasing the side effects of any treatment should be the goal of every therapist. In order to reach this aim we, conventional doctors, should briefly explain the epileptic phenomenology to the family, characteristics of the AEDs used, and mainly, to improve the doctor-patient relationship. The latter, for the serious omission of the medical schools nowadays, that every year over focus on the technological approach of the health problems, and for neuroticologic state we have been through, maybe oblige us to learn a little with the alternative therapists.

At last, we would like to emphasise that this is a pioneer study in our society and it was performed in a state of southern Brazil, whose population is basically constituted of european descendant immigrants that arrived here in the last two centuries. Brazil is a huge country, with continental dimensions, that despite of being in a fast cultural-economical-social progress, still has several very diverse inland area. For this reason, the data obtained in this investigation must not be taken as typical of our nation. It is very likely that studies with similar methodology, carried out in the future in other regions of our country, may show different results from the ones presented here.

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Acknowledgement

We thank all patients and their relatives for the co-operation that allowed us to perform this study. We also thank The Foundation Epilepsy Care Developing Countries (EPICADEC) for providing stimulus to transform an abstract into a paper, and we should be grateful to Maria Cristini Piacentini Bopprè as well, because she was a very helpful light to get the data.