Living with Nonepileptic Seizures

About Sarah Blake LaRose

Sarah Blake LaRose is a freelance writer and a professor of Biblical Hebrew at Anderson University School of Theology in Anderson, Indiana. She is one of three blind academic scholars who received the Jacob Bolotin Award from the National Federation of the Blind in 2016 in recognition of innovative work in the field of access to biblical language texts and tools for people who are blind.

When a person has had seizures while undergoing EEG testing, but the EEG does not reveal seizure activity, the person is often diagnosed with nonepileptic seizures. Many things can cause symptoms that resemble seizures; but very often doctors refer people with this presentation to counseling, suggesting that they are under some kind of stress or have experienced some kind of traumatic life event that needs healing. In fact, the term “pseudoseizures” was used for many years to describe seizures that were not epileptic.

Like those with epileptic seizures, many people with nonepileptic seizures have found that their seizures have triggers and that it is possible to identify them by keeping a seizure diary. Some have, in fact, been able to eliminate their seizures by learning to avoid triggers in the environment or use particular therapeutic techniques when they are exposed to triggering eevents.

A strong support network is also helpful to people who have nonepileptic seizures. Family and friends should educate themselves about nonepileptic seizures. Most importantly, family and friends should communicate openly with the person who is experiencing the events and learn what he or she needs from them. Some people may need help with advocacy. Others may need more space while they adjust and find their personal coping style.

Achieving control of nonepileptic seizures can be a long road due to the complicated nature of diagnosis. Some people attempt to find help through psychotherapy at a doctor’s recommendation and find that it does not help, only to find out many years later that they have an untreated medical condition. Others try several medications over a period of years, none of which work, only to learn that they had a deep-rooted emotional struggle that needed healing.

There is no clear-cut way to find the cause of symptoms that resemble seizures. Ultimately, a person must trust their own feelings and locate a doctor and therapist who will listen and work with them. Even a condition such as chronic physical pain can cause symptoms that resemble seizures. A doctor who will take time to examine the apparent neurological symptoms and treat what may be a seemingly unrelated problem with respect to its impact on the brain is a great treasure and can change a person’s life. In many cases, a therapist who is willing to take a person with seizures as a client can guide that person in the process of self-advocacy as they push through the process of getting appropriate diagnosis and, if necessary, medical treatment. Sometimes, a psychogenic trigger might be discovered along the way; but this is not always the case.

The presentation of a diagnosis of nonepileptic seizures can provoke extremely negative feelings for the person and for the family. One reason the word “pseudoseizure” is not often used now is that people often felt that doctors were accusing them of faking the events or purposefully manufacturing them for attention. In fact, some hospital staff did accuse indivicuals with psychiatric histories of this. Whatever the cause, nonepileptic seizures is a painful disorder that is very difficult to heal from. Accusing a person of attention-getting behavior can place a large stumblingblock in the way of change.

The support of family and friends is a crucial aspect of successful coping with nonepileptic seizures. This does not mean that friends and family have the power to make a person well. Nonepileptic seizures can seriously alter a person’s lifestyle; and this alteration can contribute to depression and feelings of deep loneliness and lowered self-esteem. Friends and family can help to keep self-image positive by including the person in family events and avoiding the temptation to overprotect.

As supportive people in the life of a person who lives with nonepileptic seizures, it is vital that you also care for your own mental and physical health. Your relationship with your family member only stays healthy if you yourself are healthy. Chronic illness can easily enmesh everyone in its life. In that situation, no one is happy or healthy. When everyone has life outside chronic illness, you are all well, even if someone still has the illness.

The online support group for people with nonepileptic seizures is on YahooGroups. If you wish to join, please visit the group web page.

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