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Internal stigmatization in patients with chronic migraine and medication overuse headache

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Abstract

Objectives Internalized stigma can have profound effects on how individuals with migraines and other primary headache disorders see themselves and their quality of life. We aimed to investigate internalized stigma in patients with chronic migraines and medication overuse headaches. Methods A total of 57 patients (52 women, 5 men) were included in the study, 26 of these patients were affected by chronic migraine, 31 of them were affected by medication overuse headache and chronic migraine. The Internalized Stigma Scale in Mental Illness (Ristsher’s stigmatization scale) and General Health Questionnaire were applied to all patients. Results In Ristsher’s stigmatization scale, which measures internalization of stigma, internalized stigmatization was more significant in patients with medication overuse headache than in patients with chronic migraine compared to groups (p:0.05). The subtitle of alienation was statistically significant when the groups were compared to all subscales in the form of alienation, confirmation of stereotypes, perceived discrimination, social withdrawal and resistance to stigma (p:0.05). Discussion Although internal stigmatize has been observed in chronic migraine patients, medication overuse headache is also a type of headache with intense stigma. In addition, this internal stigma perhaps plays an active role in the transformation of chronic migraine patients to medication overuse headaches patient.
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Uçan Tokuç et al. BMC Neurology (2024) 24:100
https://doi.org/10.1186/s12883-024-03586-3
Background
Stigma defined as negative labeling and stereotyping
causes individuals to feel discredited, self-perception
decreases, status loss and isolation of individuals from
society for several reasons [1].
ere are three types of stigmas: public, structural and
internalized stigma. Public stigma refers to negative atti-
tudes and stereotypes circulating in public. Structural
stigma occurs when public stigma and the negative atti-
tudes it entails are embedded in laws and organizational
practices. e self-stigma occurs when individuals begin
to assimilate and believe in negative assumptions about
BMC Neurology
*Correspondence:
Firdevs Ezgi Uçan Tokuç
ezgiucan@gmail.com
1Republic of Turkey Ministry of Health Antalya Provincial Health
Directorate, Neurology department, University of Health Sciences Antalya
Training and Research Hospital, Antalya, Turkey
Abstract
Objectives Internalized stigma can have profound eects on how individuals with migraines and other primary
headache disorders see themselves and their quality of life. We aimed to investigate internalized stigma in patients
with chronic migraines and medication overuse headaches.
Methods A total of 57 patients (52 women, 5 men) were included in the study, 26 of these patients were aected by
chronic migraine, 31 of them were aected by medication overuse headache and chronic migraine. The Internalized
Stigma Scale in Mental Illness (Ristsher’s stigmatization scale) and General Health Questionnaire were applied to all
patients.
Results In Ristsher’s stigmatization scale, which measures internalization of stigma, internalized stigmatization was
more signicant in patients with medication overuse headache than in patients with chronic migraine compared to
groups (p:0.05). The subtitle of alienation was statistically signicant when the groups were compared to all subscales
in the form of alienation, conrmation of stereotypes, perceived discrimination, social withdrawal and resistance to
stigma (p:0.05).
Discussion Although internal stigmatize has been observed in chronic migraine patients, medication overuse
headache is also a type of headache with intense stigma. In addition, this internal stigma perhaps plays an active role
in the transformation of chronic migraine patients to medication overuse headaches patient.
Keywords Chronic migraine, Medication overuse headache, Ristsher’s stigmatization scale, Stigmatization, Alienation
Internal stigmatization in patients
with chronic migraine and medication
overuse headache
Firdevs EzgiUçan Tokuç1*, Eylem ÖzaydınGöksu1 and Şennur DelibaşKatı1
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Page 2 of 4
Uçan Tokuç et al. BMC Neurology (2024) 24:100
their stigmatized condition. While these forms of stigma
contribute to the poor health outcomes of the individual,
despite the clear importance of internalized stigma for
health and psychological functionality, very few exist-
ing studies have considered directly internalized stigma
and chronic pain [24]. It is known that the stigmatizing
effects of some neurological diseases bring about deterio-
ration of social relations and decreased quality of life and
migraines are one of these diseases [5]. Migraines and
other primary headache disorders are the second leading
cause of disability in the world, according to e World
Health Organization (WHO) [6].
According to ICDH 3 criteria, patients with headaches
of 15 days or more in a month for at least 3 months and
8 of these headaches are migraine attacks are considered
chronic migraine, while patients with primary headache
and frequent use of painkillers, opoids or migraine attack
medications (10 or 15 days/month, depending on medi-
cation) are considered MOH if their headaches become
chronic and last more than 14 days [7].Only a few stud-
ies have examined stigma in relation to headaches, and
almost all of them focus on migraines. However, it is
thought that the stigma experienced by migraine patients
greatly contributes to the disability [8]. Individuals with a
stigmatized disease such as migraine internalize the neg-
ative characteristics attributed to the disease by society
and cause this stigma to be applied to their perceptions
and diseases. Internalized stigma can have profound
effects on how individuals with migraines and other pri-
mary headache disorders see themselves and their qual-
ity of life. is concept has been demonstrated in patients
with chronic migraines (CM), episodic migraines and
epilepsy [1, 2]. However, it could not be demonstrated
how much they internalized the negative characteristics
related to the diseases of patients in CM and medication
overuse headache patients (MOH). Based on this, we
aimed to investigate internalized stigma in patients with
chronic migraines and medication overuse headaches.
Materials and methods
Study design and patients
Patients who met the criteria according to ICDH3 for
CM and for MOH + CM (developed MOH on the back-
ground of CM), between the ages of 18 and 65 who did
not have any treatment for prophylaxis (especially SNRI)
and no additional diseases and any drug therapy (espe-
cially antidepressants) were included in the study in our
Antalya Education and Research Hospital headache out-
patient clinic. e Internalized Stigma Scale in Mental
Illness (ISSMI) and general health questionnaire were
applied to patients.
e ISSMI scale is a Likert type scale which devel-
oped Ritsher and his colleagues, consisting of 29 sub-
stances that evaluate the internalized stigma. ere are 5
subgroups: Alienation (6 items), Confirmation of stereo-
types (7 items), Perceived discrimination (5 items), Social
withdrawal (6 items), Resistance to stigma (5 items). e
scale ranges from 4 to 91. High scores mean that inter-
nalized stigma of the person is more severe in a nega-
tive way [9]. General Health Questionnaire, on the other
hand, determines the general psychopathology level and
was developed by David Goldberg to catch acute mental
disorders that are frequently encountered in community
surveys. Each question examines symptoms over the
past few weeks and has four options (“never happens, as
usual, more often than usual, very often”) [10].
Patients answered the scales in a room within the Neu-
rology Outpatient Clinic that would not be disturbed
from the outside. e attending physician was around in
case of any problem that may develop while the patient
was filling out the scale. A level of education that could
read and understand the scales with voluntary participa-
tion in the study was asked for. e Ethics Committee of
the Antalya Education and Research Hospital approved
this study (Number: 2020-023 KN: 3/26). All patients
gave written consent for study participation.
Statistical analysis
e statistical analysis was performed using the SPSS
software, version 26. For normality test, Shapiro Wilk
test was used. Mann-Whitney test and Kruskal Wal-
lis non-parametric analysis of variances were used to
determine the differences between the values calculated
according to the groups. Relationships between variabil-
ity were performed by using e Spearman’s Rank- Order
Correlation analysis. Relationships between determined
data groups were evaluated with T-Test and ANOVA
test. P values less than 0.05 were considered statistically
significant.
Results
A total of 57 patients (52 women, 5 men; mean age ± sd;
36.6 ± 9.86 years) were included in the study, which was
followed at the Antalya Education and Research Hos-
pital Neurology headache clinic and met ICDH3 crite-
ria. While 26 of these patients were CM patients, 31 of
them were MOH + CM. 40.3% of the patients were pri-
mary school graduates, 31.6% were high school gradu-
ates, and 28.1% were university graduates. (Table1). e
most common medication used by MOH + CM patients
was nonsteroidal anti-inflammatory drugs (NSAIDs)
(64.5%), followed by triptans (22.5%). 12.9% patients
used combination therapy (triptans and NSAIDs). In
Ristsher’s stigmatization scale, which measures internal-
ization of stigma, internalized stigmatization was more
significant in patients with MOH + CM than in patients
with CM compared to groups (p:0.05). When the groups
were compared on all subscales including alienation,
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Page 3 of 4
Uçan Tokuç et al. BMC Neurology (2024) 24:100
confirmation of stereotypes, perceived discrimina-
tion, social withdrawal and resistance to stigmatization,
only the alienation subscale was statistically significant
(p:0.05). No statistical difference was found between
the two groups in terms of general health scale (p: 0.73)
(Table2).
Discussion
Our findings demonstrated that internalized stigma was
higher in MOH + CM patients than in CM patients. In
addition, in our study, the alienation scale was statisti-
cally significant in the MOH + CM patients compared to
the CM patients. e Alienation subscale sought to mea-
sure the subjective experience of being less than a full
member of society or having a ‘spoiled identity’ [9]. Pre-
vious studies have shown that Feelings of alienation are
an important indicator of mental well-being. It has been
associated with depressed mood, psychological distress,
insomnia, and increased risk of suicide in some diseases.
e valuable aspect of our study is that there are no stud-
ies investigating alienation in migraine patients [11].
e presence of stigma in neurological disease has been
highly discussed, and there are currently a few studies on
the presence of stigma among patients with migraine
and tension-type headaches [12]. EFNA (European Fed-
eration of Neurological Associations) stated that 92% of
patients with neurological diseases in 2020 were affected
by stigma and 96% of the headache group was stigma-
tized [13].
Internalized stigma or self-stigma is the individual
cognitive, emotional and behavioral effect caused by the
internalization of negative traits added to individuals or
diseases stigmatized by society. Internalized stigma of
disease occurs when an individual experiencing imitated
stigma or discriminatory social behavior towards their
disease becomes aware of the negative cultural attitude
towards the illness and in turn practices negative, stig-
matized beliefs about themselves and their disease. ere
is evidence of internalized stigma among people with
chronic and episodic migraines [2]. In the study con-
ducted by Young, W B et al. in 2013, epilepsy patients
and migraine patients were compared and it was demon-
strated that CM patients felt more fluctuations and had a
lower quality of life perception [1].
It has been reported that CM patients with internalized
stigma have a lower quality of life and that the stigma
experienced damages physician-patient relationships.
Furthermore, studies on perceived stigma have shown
that internalized stigma has an important role in treat-
ment adherence and that better medication adherence is
associated with lower stigma [1416]. Individuals with
a stigmatized disease such as migraine internalize the
negative characteristics attributed to the disease by soci-
ety and cause people to believe that they are responsible
for the disease, causing shame and guilt in these patients.
erefore, patients try to hide their illness in such cases
or avoid receiving medical attention [2].
A study conducted in the USA demonstrated that only
about 10–15% of migraine patients refer to a neurolo-
gist or a specialist who deals with headaches. Patients
who refuse to consult expert opinion prefer nonpharma-
cological treatments. e main reasons for this choice
were thought to be stigmatization and official labeling,
disclosure and therefore discriminatory treatment by
the society. In addition, drug side effects, drug costs, dis-
satisfaction with available pharmacological treatment
options, and lack of information about the benefits of
preventive treatment also help shape these choices [16,
17].
erefore, patients can quickly turn to analgesic use
with the desire to relieve pain attacks, the fear of not
being able to hide, explain and show that they are strong,
and perhaps this drug abuse may be one of the most
important underlying causes of headache [1619].
ere are some limitations in our study. Our patient
numbers (especially man) were relatively low. Also, it
would have been better if the patients of the two groups
Table 1 Sociodemographic Characteristics of the Participants
Sociodemographic Characteristics of the
Participants
MOH + CM
(n:31)
CM
(n:26)
N(%) N(%)
Gender (Female) 27(87%) 25(96.1%)
Education Level
Primary School 13(41.9%) 10(38.6%)
High School 11(35.4%) 7(26.9%)
University 7(22.5%) 9(34.6%)
Mean ± SD Mean ± SD
Age(years) 39.1 ± 8.5 33.6 ± 10.6
Duration of
Migraine(years)
6.2 ± 2.8 5.5 ± 2.4
Duration of
MOH(month)
9 ± 3.4
CM: chronic migraines, MOH: medication overuse headache
Table 2 Stigmatization Subgroups of the Paticipants
Stigmatization
MOH + CM(n:31)
(Mean ± SD)
CM(n:26)
(Mean ± SD)
P
Alienation 14.2 ± 4.7 11.9 ± 3.9 0.05
Approval of Stereotypes 13.6 ± 4.5 11.5 ± 3.9 0.06
Perceived Discrimination 8.4 ± 2.6 7.6 ± 2.5 0.06
Social Withdrawal 11.8 ± 4 10.1 ± 4.5 0.25
Resistance to Stigma 10.4 ± 2.1 9.3 ± 2.1 0.16
Stigmatization Total 58.5 ± 15.2 50.6 ± 14.5 0.05
General Health Scale 27.8 ± 8.3 27.8 ± 8.3 0.73
CM: chronic migraines, MOH: medication overuse headache
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Page 4 of 4
Uçan Tokuç et al. BMC Neurology (2024) 24:100
were compared in terms of psychological status by a valid
questionnaire, because this issue can contribute to the
development of MOH. A comparison could have been
made with another headache type and this headache type
plus MOH. ese results could have clarified our thesis
more clearly.
Nevertheless, no studies have been observed in the
literature on the presence of stigma in patients with
MOH + CM before. And our study suggested that MOH
internal stigma is more dominant and our study is the
first study in the literature suggesting the presence of
MOH stigma.
Conclusions
As a result, although internal stigmatize has been
observed in CM patients, MOH is also a type of head-
ache with intense stigma. In addition, this internal stigma
perhaps plays an active role in the transformation of CM
patients to MOH. In this regard, there is a need for pro-
spective multicenter studies with large sample size.
Acknowledgements
Not applicable.
Author contributions
Firdevs Ezgi Uçan Tokuç, Eylem Özaydın Göksu and Şennur Delibaş Katı made
Literature review, patient collection, patient follow-up and wrote the main
manuscript. All authors reviewed the results and approved the nal version of
the manuscript.
Funding
The authors received no nancial support for the research, authorship, and/or
publication of this article.
Data availability
The datasets used and/or analysed during the current study are available from
the corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
The Ethics Committee of the Antalya Education and Research Hospital
approved this study (Number: 2020-023 KN: 3/26). Informed consent was
obtained from all subjects and/or their legal guardian(s). All methods were
carried out in accordance with relevant guidelines and regulation. All
experiments were performed in accordance with relevant guidelines and
regulations.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
Received: 13 September 2023 / Accepted: 26 February 2024
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