Left on their own in a pandemic, they need understanding and help – June 21 – Day of Solidarity with Migraine Patients

Every tenth person in Poland (10%) struggles with migraine. Two out of three patients in Poland (11,6%) sometimes hide this fact due to stigmatization and underestimation of the problem by the environment. During the pandemic, the alienation of migraine sufferers worsened, and the specificity of that time additionally worsened their health.

Patients expect, above all, understanding and actions in the field of education of the society and increasing social awareness.3 On the Day of Solidarity with Migraine Patients, let us not be indifferent to the problems and needs of this group of patients.

Migraine remains the second leading cause of disability in the world and the first among young women. According to data from 2017, it was estimated that in Poland, over 8 million people in total suffer from migraine or probable migraine (one diagnostic criterion for any type of migraine is not met). These statistics may be higher because the disease is underdiagnosed and treated, and socially downplayed.

Despite the deepening knowledge about migraine, the information on the number of patients may not reflect the actual situation, says Prof. dr hab. n. med. Wojciech Kozubski, Member of the Main Board of the Polish Neurological Society and Head of the Department and Clinic of Neurology at the Medical University of Poznań. – Patients constantly face social misunderstanding and, fearing stigmatization, do not report to specialists, therefore the scale of the phenomenon is probably underestimated – she explains.

Consequences of delayed migraines

During the pandemic, the situation of migraine patients was investigated in various countries and a significant deterioration in the condition of patients was noted. Prolonged stress and periods of shutdown had a bad effect on the mental form4, manifested in the majority of trouble sleeping, anxiety and depression.3,6 More than half of the respondents reported an increased frequency of migraine attacks, and 64% of patients reported an exacerbation of the symptoms of the disease. This is also confirmed by Polish patients.

“I asked migraine sufferers in our ‘migraine’ group on Facebook if the pandemic and lockdown had an impact on migraine attacks,” says Ms Klaudia Pytel, moderator of the Neuropositive with Head group – Many people said that migraine attacks during the pandemic were more frequent and the pain was stronger . Among the reasons for this state of affairs, group members mentioned primarily the impact of stress on well-being, intensified by the need to wear a mask for a long time at work, while using public transport or staying in closed rooms. At the same time, working from home made it easier to deal with migraine attacks – the patient can lie down, apply a compress, move to a darkened, quiet room – which would not be possible under working conditions outside the home ”.

Left to themselves

The situation of chronically ill patients in Poland, including those suffering from migraines, has worsened the current situation in the healthcare system. In a study conducted by the My Patients Foundation, it was found that the pandemic significantly limited access to primary care physicians, which was confirmed by almost half of the respondents (49,5%), and more than 4/5 of respondents who used medical care during the pandemic, has experienced a cancellation or a postponement of an appointment. Lack of contact with their neurologist during a pandemic is reported by the majority (61,5%) of the migraine patients surveyed, and more than half (58,7%) report overuse of pain medications.3

“Overturned” and unprofessional or self-treated migraine may increase the frequency of its symptoms, significantly prolong the process of returning to its normal form in a patient and, above all, the evolution of episodic migraine into its chronic form, where the headache occurs for at least 15 days a month. We deal with this phenomenon during a pandemic, when patients had limited access to specialist doctors and specialized medications. Non-Polish studies have shown the transformation of episodic migraine into chronic migraine in up to 10% of patients – says Prof. Wojciech Kozubski.

Migraine is a single woman; especially in a pandemic

Most migraine affects women. It has been shown that migraine attacks may be associated with fluctuations in estrogen levels and changes in the ratio of estrogen and progesterone levels.11 The relationship between mental health and the frequency of migraine attacks has also been demonstrated. Women are a group particularly susceptible to the negative impact of limited interpersonal contacts on the mental condition and the resulting mood disorders.10 migraine, we see a significant negative impact of the pandemic on the condition of our patients. – explains prof. Wojciech Kozubski.

In a survey conducted by InSite Consulting, upon request and with financial support from Teva, it was shown that migraine sufferers very often do not admit their ailments for fear of stigmatization; in Poland, this fact was confirmed by as many as 61% of the respondents.

Migraine sufferers very often face social misunderstanding, disbelief and lack of acceptance. So they feel guilty and ashamed of their condition. – explains prof. Wojciech Kozubski – They try to ignore the symptoms without admitting to such a strong headache as not to be accused of neurological problems, a period of indisposition. They hide the disease from their surroundings and do not seek professional help. Restrictions on access to health care, confinement, isolation and enormous psychological stress during the pandemic could have made this situation significantly worse, he adds.

The main thing – understanding and educating the public

One of the most important things for us migraine sufferers is understanding and acceptance. There is nothing worse than suffering from a feeling of misunderstanding, sometimes feeling guilty. We are afraid to admit our condition, we hide from the world, even from our loved ones. This is, unfortunately, a sad reality in the migraine community. – says Ms Klaudia Pytel.

Patients suffering from migraines in Poland admitted (38%) that in their opinion, the ruling party and the general public did not take migraine seriously. Half of the respondents (49%) believe that the greatest benefits for the migraine community would come from better public education and awareness-raising.

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