Jean MacKinnon, M.A.
Reprinted from the Journal of Cognitive rehabilitation,
Sept./Oct 96, with permission
Despite the advances of modern medicine in the treatment of epilepsy, there are still a number of patients with epilepsy who are prevented from living a normal life. This may be due to the fact that anticonvulsant medication is not completely effective in controlling seizures (Tempkin & Davis, l984). Approximately 80% of individuals with tonicclonic seizures and only 40% of those with partial complex seizures have complete control with medication (Reiter & Andrews, 1987). There are other problems as well. Many patients may find that the level of medication required to completely control seizures produces side effects that are almost intolerable, such as memory loss, drowsiness, inability to concentrate and difficulty in performing basic cognitive processes (Rousseau, 1985).
In centuries previous to the discovery of medication for treating epilepsy, it was known that various physiological and biological factors seem to "trigger" seizures. In the last century, the author of "Alice in Wonderland," Lewis Carroll, discussed his epilepsy, describing the connection he saw between mental stresses and seizures (Cohen, 1982). In fact, "medical writers since Galen (2nd Century A.D.), have described people who could avert seizures voluntarily" (Charlton, 1994).
More recent studies also indicate that emotional and biological stressors trigger seizures (Rajna & Veres, 1989). Based on this knowledge, studies have been conducted using progressive relaxation, cognitive behavioural therapy, biofeedback and counseling to reduce seizure frequency. The Andrews/Reiter Epilepsy Research Program has developed a workbook for patients and professionals to apply these methods in a formalized program (Reiter & Andrews, 1987). Of patients treated in this program, 83% were able to achieve complete seizure control (Andrews and Schonfeld, 1992).
In this paper, there will be a discussion of the Andrews/ Reiter program and how it was implemented by the Victoria Epilepsy and Parkinson's Centre.
Review of Literature
In a study of the correlation between seizure frequency and major life events, Webster and Mawer (1989) found that acute and chronic stress increased seizure activity. Negative emotions in particular seemed to lower the seizure threshold. They also found that alleviation of chronic stress by psychotherapy resulted in fewer seizures. Another study found that a patient's psychic state, primarily the level of emotional tension, correlated with seizure frequency (Rajna & Veres, 1989). Yet another study found that "minor, chronic, everyday events" not major life events were strongly associated with higher seizure incidence (Temkin & Davis, 1984). One author, in her review of behavioural treatments for epilepsy, suggested that "the cause of an epileptic seizure may not simply be the result of abnormal neuronal activity but rather a complex interaction between the brain state of a person and their interaction with their environment" (Goldstein, 1990).
Several studies in the last decade have used stress reducing techniques in the treatment of epilepsy. For instance, progressive relaxation training employed in one study resulted in a 25% reduction in seizures after only six sessions (Puskarich, Whitman, Dell, Hughes, Rosen & Hermann, 1992). Another study using progressive relaxation showed a decrease in seizures as well as overall wellbeing. "Patients related that they were sleeping better, were less aggravated or less tense during the day, had improved feelings of control over their epilepsy, and were less afraid of their seizures" (Rousseau, Hermann & Whitman, 1985).
In Sweden, a broader spectrum of behavioural treatment methods has been employed in two studies with children. In one study, children were taught symptom discrimination, countermeasures, positive reinforcement and contingent relaxation (Dahl, Melin & Leissner, 1988). Results indicated that only the countermeasures were effective in reducing seizures. These countermeasures involved training the children to use techniques to interrupt and abort seizures during early cues of the onset of a seizure. The success of this treatment was evidenced in the significant reduction in paroxysmal discharges in EEG's as well as reduction in seizures. A second study conducted by Dahl et al, (1992) involved an eight year followup of children who underwent this same treatment. It was found that the significant gains in seizure reduction were maintained by the treatment group throughout the eight years. They found seizure indexes for the control groups had remained unchanged.
In Canada, a study was conducted using cognitive behavioural methods to treat individuals with epilepsy (Tan & Bruni, 1986). Stress inoculation, relaxation and coping skills training, behavioural rehearsal and problemsolving discussions were some of the techniques employed in a group setting. Control groups of supportive counseling (attention control) and wait list (control) were established. Both the behavioural and supportive counseling groups improved significantly following eight twohour weekly sessions. However, no longterm improvement was maintained. It was concluded that cognitive behavioural methods employed in a group setting may not be the most effective treatment for individuals with epilepsy or that the length of treatment was too short (Tan & Bruni, 1986).
Another study which employed individual psychological treatment methods was very successful in reducing seizures as well as improving subjects coping skills and sense of selfcontrol (Gillham, 1990). Treatment included helping subjects to identify factors which contributed to seizure frequency and to learn methods of interrupting or aborting seizures. Brief counseling intervention with regard to social and emotional problems was also part of the treatment. Seizure reduction for all 59 subjects was 33% and half of all subjects achieved a 50% reduction.
The most comprehensive study reporting this kind of work was conducted by the Andrews/Reiter Epilepsy Research Program (1992). A random sample taken of patients treated in this program between 1980 and 1985 revealed that 83% of patients achieved complete seizure control. The methods employed comprised a combination of the methods used in the other studies mentioned: counseling to identify life stressors and seizure triggers, biofeedback training to abort seizures, progressive relaxation and other stress reduction techniques and cognitive behavioural therapy.
Project Summary
In January, 1995, the Victoria Epilepsy and Parkinson's Association undertook a small pilot project using the methods outlined in the workbook, "Taking Control of Your Epilepsy." A counselor, Donna Andrews, developed these methods in conjunction with a neurologist, Dr. Joel Reiter. They coauthored the workbook along with Charlotte Janis.
The "Taking Control of Your Epilepsy" program is a "wellness" approach to treating epilepsy. This method combines counseling to identify stressors and seizure triggers with teaching relaxation methods and biofeedback.
Before counseling sessions began, project participants were asked to keep seizure records for twelve weeks. This provided a baseline. The project began with intake sessions conducted by Donna Andrews and Jean MacKinnon, epilepsy program coordinator. Andrews provided training and consultation at this time. After intake, the seven project participants were seen individually by MacKinnon in weekly appointments for 12 to 20 sessions. Consultation with Donna Andrews was conducted monthly by phone.
After the counseling period ended, followup was conducted every three months up until one year (January, 1996). Longterm followup will be continued in the future.
Of the seven participants, six showed improvement by a decrease in seizures. One showed an increase in seizures. The table provided shows seizure frequency of the participants for the year of the study and followup (see Table 1).
Initially, participants were taught diaphragmatic breathing methods to abort a seizure during the aura phase. Success in this made it possible for participants to immediate feel a measure of control over their seizures. Some participants also found that paying attention to their breathing throughout the day and avoiding breathholding during times of anxiety also brought an immediate reduction in seizures.
Participants were asked to listen to a relaxation tape daily. This was effective for six of the seven participants who reported a significant reduction in stress as a result. One stated, "I'm a completely different person with this tape".
The biofeedback part of the "Taking Control of Your Epilepsy" program was not implemented due to unavailability of the equipment. Instead, participants learned to identify a relaxed state and practice it by use of the relaxation tape and other relaxation exercises.
In keeping with this, participants were asked to utilize cognitive behavioural techniques to examine their thinking patterns. Some became aware of certain thought patterns or feelings that were habitual. This varied between individuals. For some it was a tendency to feel fearful and anxious, some struggled with a pattern of feeling sad and hopeless, and for others there was an addiction to anger. Participants found that if they avoided their particular thought pattern, they did not seem overtaxed and they were less prone to have seizures.
Participants learned to identify environmental factors that triggered their seizures. For example if there is damage in the auditory part of the brain, a sudden sharp sound may trigger a seizure. One way to prevent seizures is to avoid the trigger, for example by listening to a sound effect tape and training the brain to relax and not go into seizure with the sounds that formerly triggered seizures. Participants were encouraged to try both these methods.
As well as physical and environmental triggers, emotional triggers were examined. Through the treatment period a specific life issue became evident for each participant. This seemed to create lowgrade, longterm stress that highly impacted the seizure frequency. The life issues or common emotional triggers were: achievement anxiety, relationship problems, social anxiety and lack of personal boundaries. Sometimes emotional triggers could not be eliminated. For example, a teacher might trigger achievement anxiety by giving an assignment. In this case the participant could not avoid the trigger, but instead learned to avoid the "negative state" that she or he experienced as a result of the trigger. The participant was taught to respond differently, using cognitive behavioural methods such as selftalk or reframing the situation.
Teaching participants how to set personal boundaries was an important part of this program. One challenge for several participants was to learn to not "take on" the problems of others and to learn to reduce their "caregiver" tendencies. When they learned to be more assertive and less influenced by the needs and demands of others, there was a decrease in seizure activity.
Participants found that by setting boundaries and paying attention to their own needs, they began to establish more healthy lifestyle practices. They found they practiced better eating and sleeping habits and established more regularity in their daily routines. This practice in itself contributed to significant decrease in seizures.
Certain participants were more successful in the program than others. This may be due to a number of reasons. Readiness is one factor. Some were more ready to look at life issues and take responsibility for their wellness. Life situations var-ied and some faced many more current challenges or had much less support from significant others. Also it must be taken into consideration that there was a variation in the severity of damage in the brain tissue. Age of onset and the severity of the seizure disorder appeared to be important factors in success.
Two of the participants were nine-year-old boys. Counseling and record keeping was a joint effort between parents and children. These two children were able to master the relaxation methods fairly easily, but had greater difficulty coping with the emotional stressors that affected their seizure frequency. Children generally take longer to master all the elements of this program (Andrews, 1995, personal communication).
The one participant who experienced an increase rather than a decrease in seizure activity was an adult. She was unable to control her main emotional stressor. In fact it seemed to worsen as we focused on it.
The other participants noticed improvement through the treatment phase, but further improvement was achieved in the months to follow as the lifestyle changes and relaxation methods were incorporated more completely. None of the participants were seizure free at the end of treatment, but this was achieved by three of the participants in the months to follow.
From this project, it was learned that counseling methods can be useful in reducing seizures for those who have not achieved complete seizure control through medication. Longterm followup of the participants will be continued for the next two years. The Victoria Epilepsy and Parkinson's Centre has made this treatment method available to other clients in the Society with positive results. It is hoped that a controlled scientific study can be conducted in the near future.
REFERENCES
Andrews, D.J. & Schonfeld, W. H. (1992). Predictive factors for controlling seizures using a behavioral approach. Seizure, 1, 111-116.
Charlton, C. (1994). Self control of seizures. Epilepsy Association of South Australia News, 17, 1 0.
Cohen, M.N. (1982). The Selected Letters of Lewis Carroll. New York: Pantheon Books.
Dalh, J., Brorson, L.O., & Melin, L. (I 992). Effects of a broad spectrum behavioral medicine treatment program on children with refractory epileptic seizures: An eight-year followup. Epilepsia, 33(l), 98-102.
Dahl, J., Melin, L. & Leissner, P. (1988). Effects of a behavioral intervention on epileptic seizure behavior and paroxysmal activity: A systematic replication of three cases of children with intractable epilepsy. Epilepsia, 29(2), 172--183.
Gillham, R.A. (1990). Refractory epilepsy: An evaluation of psychological methods in outpatient management. Epilepsia, 31(4), 427-432.
Goldstein, L.H. (1990). Behavioral and cognitive behavioral treatments for epilepsy: A progress review. British Journal of Clinical Psychology, 29, 257-269.
Jacoby, A. (1992). Epilepsy and quality of everyday life. Social Science and Medicine, 34(6), 657-666.
Puskarich, C.A., Whitman, S., Dell, J., Hughes, J.R, Rosen, A.J. & Hermann, B.P. (1992). Controlled examination of effects of progressive relaxation training on seizure reduction. Epilepsia, 33(4), 675-680.
Rajna, P. & Veres, J. (1989). Life events and seizure frequency in epileptics: A followup study. Acta Medica Hungarica, 46, 169-187.
Reiter, J., Andrews, D.J. & Janis, C. (1987). Taking Control of Your Epilepsy. Santa Rosa, CA: The Basics Publishing Co.
Richard, A. & Reiter, J. (1990). Epilepsy: A New Approach. New York: Prentice Hall Press.
Rosenbaum, M. & Palmon, N. (1984). Helplessness and re-sourcefulness in coping with epilepsy. Journal of Consulting and Clinical Psychology, 52(2), 244-253.
Rousseau, A., Hermann, B. & Whitman, S. (1985). Effects of progressive relaxation on epilepsy: Analysis of a series of cases. Psychological Reports, 57, 1203-1212.
Tan, S.Y & Bruni, J. (1986). Cognitive behavior therapy with adult patients with epilepsy: A controlled outcome study. Epilepsia, 27(3), 225-233.
Temkin, N. & Davis, G.R- (1984). Stress as a risk factor for seizures among adults with epilepsy. Epilepsia, 27(3) 225--233
Webster, A. & Mawer, G.E. (1989). Seizure frequency and major life events in epilepsy. Epilepsia, 30(2), 162-167.
Reprinted from The Journal of Cognitive Rehabilitation, Sept/Oct 1996, with permission.
Stopping Seizures by Yourself
From Epilepsy: A New Approach by Adrienne Richard and Joel Reiter, MD, New York: Prentice Hall Press, 1990
"As I settled into the circle at the first meeting of a support group for persons with seizures, I realized that the man to my left suffered from what these days are called developmental disabilities. Usually we don't see such people at meetings, and I was immediately impressed by the simple courage it took for him to be there, accompanied by his mother and the director of the group home where he lived. As the discussion turned to methods we can use to help ourselves, particularly dispelling fear, he spoke and I was impressed even further.
"I do that," he said, his voice somewhat hoarse and halting. "I tell myself, keep calm, keep calm."
"Does the seizure stop?" I asked.
He nodded. "It goes away." he said.
"Did someone teach you to do that?" I asked.
He shook his head, looking a little hurt. "I thought of it myself," he said.
I turned away in wonder, impressed that even a person whose functioning was as compromised as his had found a way to intervene on his own behalf and arrest a seizure. This man's personal experience was an addition to the growing number of similar accounts that I had heard since reading Dr. Efron's case history of the woman who aborted her seizures with a sniff of jasmine.
(Dr. Efron's patient was a concert singer whose seizures kept her from pursing her career. Each seizure was preceded by a warning signal, an "aura," that manifested itself as the hallucination of a disagreeable smell. Dr. Efron gave his patient a small vial of essence of jasmine to sniff whoever she hallucinated this bad smell. It enabled her to stop her seizures before they went full course. Later he taught her through a process of conditioning how to imagine the odor of jasmine and stop her seizures by doing so.)
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