"Your head is not your ass, tie it up and lie down."
How migraines make people lose their jobs, families, and the will to live, while society advises them to "take a citramone and stop whining."
Migraine - it Recurring headache attacks lasting from three hours to two to three days. The pain is accompanied by increased sensitivity to sound and light, nausea, and vomiting. This is a neurological disorder that cannot be cured; attacks can be prevented, their course can be alleviated, and the pain intensity can be reduced. Classic migraine—the pain is localized to one side of the head—is not the only type of the disorder.
Migraines suffers more than 1 billion people — 14,5% of the world's population. In Russia fixed one of the highest rates of prevalence of this disease - almost 30 million people, which is 20,8% of the country's population. Women suffer from migraines much more often, they account for approximately 70% of all patients with this disease.
A debilitating headache is just the beginning. Along with it come bouts of resentment and anger, self-hatred and hatred of others, depression, disorientation, memory loss, prolonged depression, and loss of a job and/or family. Because the disease is "invisible"—the person appears healthy, with intact arms and legs—society underestimates the severity and significance of the condition.
"NeMoskva" publishes stories of women who have spent years trying to overcome migraines and prove to their loved ones and society that they are not "fooling around," and that most medications, especially the notorious Citramon, are ineffective against migraine pain.
Tchaikovsky, Dostoevsky and the "invisible" disease
"More than anything in the world, the procurator hated the smell of rose attar, and everything now foreshadowed a bad day, as this scent had begun to haunt him since dawn. It seemed to the procurator that the rose scent was emanating from the cypresses and palms in the garden, that the accursed rose odor was mingling with the smell of leather and the convoy. Yes, there was no doubt about it! It was there, again, the invincible, terrible disease of hemicrania, which afflicts half the head. There was no cure, no escape. I'd try not to move my head."
This is the most famous description of the migraine with which Mikhail Bulgakov "awarded" his character Pontius Pilate. Bulgakov himself suffered from migraines. Migraines tormented Julius Caesar and Alexander the Great, Ludwig van Beethoven, Pyotr Tchaikovsky, Charles Darwin, Fyodor Dostoevsky, and Sigmund Freud, and continue to torment Whoopi Goldberg and Sharon Stone, as well as millions of other famous and not-so-famous people.
A migraine is not just any headache that can be relieved with a painkiller. The cause of migraines is A central nervous system disorder that triggers a cascade of reactions leading to dilation of cerebral blood vessels and inflammation around them. This results in excruciating headaches. The condition is not fully understood, and there are no universal treatments. One combination of medications works for some, another for others, and still others find nothing helpful.
In addition to the difficulties of treatment, there is the problem of making a correct diagnosis. A neurologist with 18 years of experience told NeMoskva about this. Yuri Shcherbakov (surname changed at the expert’s request).
"The fact is, migraines can't be detected by testing; blood tests, MRI, CT [magnetic resonance imaging, computed tomography], or ultrasound [ultrasound] of the head and neck vessels won't help. Tests are conducted to rule out other serious brain diseases. A diagnosis is made solely based on the patient's interview, testing, questionnaires, and headache diary. But a patient tormented by pain may misrepresent their experience: the pain may intensify when turning their head, or not, or it may be worse in the morning or in the evening. And these factors influence the final result."
The head also hurts quite a bit with tension headaches and abuse headaches (headaches from overuse of painkillers), with cervical osteochondrosis and vegetative-vascular dystonia, and there can be hundreds of other causes.
Therefore, it's important to find your doctor and initially consult with several. Because migraine has become a "fashionable" condition, some private clinics "add" symptoms to this diagnosis and then aggressively treat with the wrong things. In my practice, about a quarter of all patients complain of headaches, and of those, about 20 percent are diagnosed with migraine. — the specialist said.
His patients with migraines and headaches in general sometimes complain of a lack of understanding of their condition by loved ones, bosses, colleagues, and society. The reason, according to the doctor, is obvious: the headache sufferer doesn't limp and groan as with appendicitis or renal colic, nor do they lose weight or hair, as is the case with most types of cancer. If a person with migraines has the strength to go outside or to work, they appear neat and try not to show how ill they are—precisely because of the attitudes of others toward their illness.
But this is only an appearance.
Tatyana from Lipetsk, 49: "We live in hell"
Tatyana, a Russian language and literature teacher, had to quit her job at the school due to frequent headaches and numerous triggers: noise, stress, and overwork. She tutors, but sometimes has to cancel classes due to headaches, which upsets her parents. She also worries about them, and the stress intensifies the pain and makes it more prolonged. She's tried several treatments recommended by doctors, but they don't help.
"I've had headaches since I was young. At university, I'd try to skip the last classes to take a nap. My mother didn't approve of this and would say: "Your head is not your ass, tie it up and lie down." She repeated this after her mother, my grandmother. My grandmother told this to my mother's older sister, my aunt. For some reason, only recently did my mother tell me that my aunt suffered from migraines: she took sick leave through a friend, since it was difficult to get it just because half her head hurt. She would lie down, close the curtains tightly, and complain that even the buzz of a fly brought on a new wave of pain.
That is, before, no one talked about migraines at all. If you have a headache, take a pill and don't be a fool. Complaining about a headache was equated with laziness. I understood this and lied at college and to my mother: either I had my period coming and my stomach hurt, or I had a cold and my kidneys were hurting. Those kinds of pains were met with more compassion.
Things were a bit of a blur in my youth, but the worst came after COVID. My headaches didn't go away for almost six months. Then another attack came, then another... I remember one night, a hurricane was raging, and I started having such pain that I was rolling around in bed, howling. My husband called an ambulance. They took my blood pressure, sniffed me to see if I'd had any alcohol the night before, advised me to take Nurofen, and then left. I started reacting to the weather and magnetic storms, but official medicine says there's no such thing as weather sensitivity. I went to private clinics.
We don't have many cephalgologists, so I visited them all. Two diagnosed me with bilateral migraines without aura, and one diagnosed depression. They all prescribed medications that either didn't improve my symptoms or immediately made me feel really bad—tachycardia, depression, headaches, and ringing in the ears. After changing a couple of protocols, they suggested an expensive procedure called botulinum therapy—injections of botulinum toxin into specific points on the head and neck. I read about it online and realized it doesn't help everyone, and the cost is high, so I declined.
Now I just endure the attacks until I see a way out. But sometimes I want to howl, and sometimes I call my daughter and start giving her all sorts of orders, as if I were dying. Because I have a persistent feeling that my head is about to explode, or catch fire and burn.
I don't know anyone with this condition. I recently saw a Telegram chat with girls dealing with this problem and had a good chat. It became clear that things can get even worse, even to the point of suicide attempts. They share their experiences, and the girls themselves are asking doctors to try this or that treatment—meaning the specialists aren't fully familiar with the treatment methods for this condition. And this hurts me even more. How is it possible that so many people suffer from this terrible disease, and yet so little attention is paid to it? There's little information, and few cephalgologists. Recently, my husband got tired of me and said, "Find out where in Moscow they treat it, let's go." And I found out: well-known Moscow specialists charge 12 rubles just for a single consultation. Basically, to treat migraines, you have to be rich. And recently, I saw in a chat that a blogger friend of mine was collecting money for a girl's preventative medication; it costs 22 rubles a month. How is that possible?
My mother understood me only now, after seeing all my life that I'm not lazy, that I don't hide from work and problems, that I really am sick. And she apologized, saying that no one really took headaches seriously before. And they still don't.
I missed a relative's anniversary party—she was offended. I told her I had a headache, and she looked at me in surprise. Like, "Wasn't it possible to take a pill?" I missed my checkup on time, and the therapist was surprised: "But it's only two steps to the clinic!" The school principal called me back, and when I refused, she kind of joked: "You're making excuses again!"
It's just that people who haven't experienced a week-long headache will never understand what it's like. We live in hell, and the inhabitants of "heaven," where there are no headaches, avoid us.
According to a general practitioner, head of the therapeutic department of the district clinic Oksana N., Neurologists at municipal clinics diagnose migraine, but only if it is severe and classic: half the head hurts, nausea and a migraine aura are present.
"I've been the department head for four years, and during that time I've rarely seen this diagnosis mentioned in our documents, but it still gets made. And by younger doctors, at that. Our neurologist of retirement age is completely unaware of this diagnosis. It's been around in Russian medicine since the late 1980s, but it's always been a rare occurrence. It's possible to get sick leave based on this diagnosis, but it's not always possible to get an appointment with a neurologist right away: you first have to see a general practitioner, who will make a questionable diagnosis—for example, vegetative-vascular dystonia—give you a sick leave certificate, and refer you to a specialist. If medications don't work, the neurologist can refer you to a neurology department, but that's where the expertise of a typical municipal clinic ends. I can tell you for sure that I've never signed documents for a medical and social examination (MSE) for migraine. Disability is not granted based on this diagnosis."
Lyuba from Moscow, 26: "Fighting cancer was easier."
Diagnosis: refractory (severe, unresponsive to standard treatment) chronic migraine. Mild pain-relieving antidepressants have been ineffective, as has preventative therapy. Triptans and nonsteroidal anti-inflammatory drugs (NSAIDs) (the mainstays of migraine prevention and relief) are ineffective, so she simply has to endure the pain during attacks. Lyuba hopes that doctors will eventually find that magic therapy that will help, or invent new medications. In the meantime, she's struggling to overcome her suicidal thoughts.
"I worked at an evidence-based medicine clinic myself, rising to deputy manager, but I had to leave: the pain took all my energy, leaving me with no energy left for work. At the time, I was getting some procedures at a significant discount, but that's no longer an option."
My relatives are very tired of my condition. They try to support me and sympathize, but their strength is waning. My mother responds to my mention of a new attack with these responses: "It's nothing new" or "nothing unusual."
I recently said I was dying of pain, and she replied, "I wish it would happen sooner." I have a very good mother, she's been through a lot with me, and she said it as a joke, but it was hurtful.
I have few friends left. When this tragedy happened to me, many turned their backs on me. But one day, a friend's aunt brought an expensive drug from the US for free—for me, it wasn't the drug itself that was valuable, but the attention. I also have a boyfriend—he's my salvation. When I really don't want to live, he finds words of encouragement.
I attempted suicide three times this summer. I did it because of the unbearable pain, when no one could (or would) help me. Lately, I've gotten the feeling that 80 percent of doctors only want money from us, people with severe migraines. Some popular, well-advertised doctors turned out to be "weak" for my case. They weren't willing to delve deeper or adjust my therapy.
After another attempt, I ended up in a mental hospital. Strangely enough, I was treated well there: no one judged me, and they seemed to understand me. Some of the nurses were so wonderful that I waited for their shift shift. The doctor was wonderful! It's a shame he couldn't help.
The girls in the department had various diagnoses, mostly bipolar disorder and depression, and I was the only one with migraine. But migraines inevitably lead to depression, so it's not for nothing that they prescribe antidepressants.
Almost ten years ago, I survived cancer. I knew when I would get better and when my condition would worsen, depending on the medications I was taking. I had hope and determination to recover, and there was progress in my treatment. Migraines, however, come on suddenly and go away unpredictably. I battled the cancer for a year, the migraines for over two years, but there's no end in sight. I feel like cancer is easier to beat.
I also realized that migraines aren't taken seriously. I used to think they were just a bad headache that made you feel bad for a short time, and then you were fine again. You just had to endure it for a day or two, and then you'd forget about it. I didn't know migraines could be severe and chronic, and that medications might not help at all.
Why didn't I, a clinic employee, know about this? Because it's not talked about in society, the media doesn't cover it, and sick leave is a big no-no. Migraines actually make you disabled, but in our country, disability benefits for migraines aren't available. And you're caught in a vicious cycle: you can't work because you have headaches. To at least have them less often, you need to take preventative therapy, which is very expensive. It's time the government addressed this issue.
The cost of an initial consultation with a cephalgologist in some Russian cities:
- Nizhny Novgorod — 4,200–7,000 rubles
- Lipetsk — 1,800–5,500 rubles
- Ryazan — 3,700–6,000 rubles
- Yekaterinburg — 5,000–10,000 rubles
- St. Petersburg — 5,000–8,000 rubles
- Moscow - 12,000 rubles
The cost of some modern medications for the prevention and relief of migraine attacks:
- Exenza (nasal spray, 20 doses) — 1,330 rubles
- Nurtec (2 tablets) - 2,630 rubles
- Adjovi (injection once a month) - 23,000 rubles
- Qiulipa (monthly tablets) — 27,300 rubles
Inna, 35, from the Nizhny Novgorod region: "I thought pain like this could only come from brain cancer."
Inna's headaches began 10 years ago after giving birth. She works occasionally as a saleswoman at her sister's store. She sold her grandmother's inheritance—a house in the countryside. She lives with her son on this money and dreads the moment it runs out. Inna can't work full-time and spends about 30 rubles a month on preventative treatment. It only relieves severe attacks, but it doesn't clear her head.
"I didn't understand what was wrong with me. The pain was sharp—like a burning sensation beneath my skull—a dull, aching, and constant. I recognized it as a "regular" headache, the kind you could treat with a painkiller. They diagnosed me with postpartum depression and pumped me full of antidepressants. They sent me round and round the doctors—an MRI, a neck ultrasound, an electrocardiogram, a gynecologist, an endocrinologist... When I went for the MRI, I was giving up on life: I thought pain like this could only come from late-stage brain cancer. But no, the tests showed no abnormalities!"
I thought about the evil eye, a curse, and simply the doctors' incompetence. I took vitamins, went to confession with a "clairvoyant," took long walks with my child, read prayers, and begged God for forgiveness and mercy. Nothing helped.
I've heard so much advice during this time! "Drink some water" and wash my hair, go to church more often, don't hold grudges, become kinder, have another child.
I don't remember raising my daughter in those first years; I lived like I was in a dream. The "enlightenment" periods lasted three months, and I tried to give her as much attention as possible. Now she's 10. She understands that her mother is unwell, but I start crying every time she complains of a headache. Has it really started for her too?!
I've learned to live with this pain; I've become accustomed to it. My husband left me five years ago, and he was always snarky in bed: "What, are you going to say you have a headache again?" My mother-in-law taught me, "Just get over it. He's from work, and you're the one sitting at home with a sour face. It's not okay to have constant pain!"
They also said that "I'm pretending to be part of the intelligentsia" because they heard somewhere that migraines are "an intellectual disease," and I only have a secondary vocational education. My parents are alive, but they're retired and can't help. I'm currently taking therapy, which costs between 22 and 24 rubles, and I understand the cost will increase.
Once we've spent the money from the house, I don't know how I'll raise a child. I asked the neurologist at the local clinic about my disability—she looked at me like I was crazy. I was diagnosed at a private clinic, but I can't go there often; I'm trying to save money. Besides, I can't live on the pittance a disability pays.
Regarding social acceptance... I thought for a long time and realized that society doesn't accept the weak at all. We need healthy, energetic, active people, people who are building careers and enjoying themselves, people who are pleasant to look at. And any weaklings—they should be out of sight. If there was a nursing home for "migraine sufferers," I'd go there myself. My sister won't abandon my daughter; I've talked to her about it.
Photo: Pexels.com stock
