In several European countries, epilepsy colonies were established in the latter half of the 19th century. The colonies, most often located in the countryside, came about on the initiative of philanthropists linked to a Christian humanist movement originating in Germany.

In 1895, inspired by these colonies, the deacon Ludvig Waale (1861–1932) established a small epilepsy institution in Kristiania (now Oslo). When it soon became clear that the institution was too small for the purpose, the deacons’ association bought a farm in Bærum, just outside Kristiania. In 1913, this farm, consisting of 500 acres, was converted into an epilepsy colony with 64 patients (Fig. 4).

Fig. 4

The main house of the farm after the conversion into an epilepsy colony

Overall, 80% of the admissions to the colony were financed by the state, while relatives paid for the remaining 20% [19]. Due to great financial difficulties, the deacons chose to transfer the colony to the state in 1920 [20]. Some years ago, by chance, we discovered copies of the handwritten correspondence from the institution administrator from the first years, the accounting ledgers, and meticulously registered seizure diaries for the patients admitted to the colony (Fig. 5).

Fig. 5

The accountant ledgers, correspondence copies, and seizure diaries from the first years of the colony

Frequent seizures and high mortality rate

The patients participated in the farm work to the extent that they were able. During the first 2–3 decades, the finances at the institution were marginal, and there was a shortage of personnel. Some employees found it a great strain to witness the poverty the patients lived under. Women and men lived in separate buildings, and when arguments arose, which was not rare, some could be put in isolation [20].

A seizure calendar was kept for each patient. Some patients had extremely frequent seizures. For example, in August 1918 a male patient had 2526 seizures. The seizures were not sub-classified as we do today, but most of them were probably of the tonic–clonic type (Fig. 6).

Fig. 6

Seizure diary of a 29-year-old male patient who in 1918 survived after having had 3072 seizures during a period of 19 days

During the period 1913–1919 there was on average 8.5 deaths (4–24 deaths) per year. As no seizure-stopping drugs were available at that time, many of the patients died in convulsive status epilepticus. The particularly high mortality in 1918 (24 deaths) was mainly caused by the Spanish flu [19].

For most patients, epilepsy was not the only problem

In addition to severe epilepsy, most patients had problems of cognitive, psychiatric, and/or behavioral nature. In retrospect, it is difficult to determine what caused many of the behavioral abnormalities described; the epilepsy etiology, ictal events, postictal psychosis, comorbidities, side effects of the drugs, or something else [19].

About a patient who was hospitalized for 4 months in 1915, it is recorded: “He had to be discharged due to violent behavior. Lately he had to be tied up because he hurt himself. He bit his left little finger, so it had to be amputated.” Why this patient behaved violently was not mentioned. The hospital conditions were horrible, and people lived on top of each other.

Few treatment options at first

The majority of patients were treated with bromide salts, mainly potassium bromide. The bromide salts could curb the seizure tendency, but the price was often high. The side effects, called “bromism,” could be very debilitating. Most frequently these were fatigue, apathy, mental sluggishness, nausea, drooling, severe acne, pustules and ulcers, irritability, acting out, and even psychosis. Some patients were described as profoundly lethargic. Bromide acne on the face was called “facies epileptica” [19].

After phenobarbital became available in Norway in the 1920s, the patients were offered a mixture of one or two, i.e., a combination of bromide salts and phenobarbital in different mixing ratios. Right up to 1970 they were also given bromide baked into bread (see Table 1).

Table 1 Recipe for “epileptic bread” at the colony

The bread was to be eaten within 7 days, equally in the morning and evening. The treatment should continue for at least 3 years [21]. A patient recounted during an interview to the local newspaper that he was given bromide bread at the age of 13 (in 1939), and that he recovered completely [22].

An epileptic regime

At the colony, “the epileptic regime” was applied, i.e., the patients should live calm and regular lives without great stress. Rest breaks took place during the day; the more attacks, the more rest. Fasting and fluid restriction were also applied. Because the patients should not have more than one liter of liquid a day, some patients complained that their mouth was so dry that they could hardly swallow food [18]. To counteract drug-induced fatigue, the patients should drink 0.10–0.30 g of caffeine in the morning.

Neurologists from the National Hospital in Oslo were responsible for the medical treatment at the colony, and in the 1930s professor Monrad-Krohn introduced handwritten medical records for each patient.

Gradual transformation from an epilepsy colony to a modern epilepsy hospital

The colony’s first medical director, Georg F. Henriksen (1904–1981), was well qualified for the task. He had trained as both a psychiatrist and a neurologist and studied epileptology for 1 year with William Lennox at Framingham in the United States. During his tenure (1955–1974), thanks to his efforts and increased prosperity in Norwegian society, the colony was gradually transformed into a modern epilepsy hospital. The hospital acquired its own children’s ward in 1955, its first EEG machine in 1957, a laboratory for therapeutic drug monitoring in 1969, and a long-term monitoring (LTM) unit (telemetry) in 1974. In 1975, the hospital had 184 beds: 34 for residential care, 36 for children, and 114 for adolescents and adults.

In recognition that epilepsy is more than seizures, in 1975, the name of the institution was changed from the National Hospital for Epileptics to the National Center for Epilepsy, and multidisciplinary teams were established according to the comprehensive care model [18]. A new children’s department was opened in 1996, and an epilepsy-monitoring unit (EMU) with ten beds was inaugurated in 2006.

As part of a National Health Reform, the epilepsy center merged with the National Hospital in 2001. In 2009, after a reorganization of the health service in the southeastern part of Norway, the center became a separate institution under the umbrella of Oslo University Hospital.