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Does it seem like your memory and thinking have changed since you started having seizures?

Our feature article in this quarterly issue focuses on some of the difficulties that patients with epilepsy and other seizure disorders may find they are having along with explanations about the tests that can be used confirm these difficulties and to check for changes over time.  

We sat down with neuropsychologist, Dr. Keren Isaacs Lebeau, to learn more about neuropsychological testing.  Keren Isaacs Lebeau, Ph.D. is the Co-Director of Clinical Neuropsychology with the Northeast Regional Epilepsy Group.  She earned her Ph.D. in Clinical Psychology from The George Washington University and completed her post-doctoral fellowship training in neuropsychology at the NYU Comprehensive Epilepsy Center.  Dr. Lebeau has extensive experience in the neuropsychological evaluation of children and adults with epilepsy and other neurological disorders.  

What are the most common problems of thinking and memory seen in adults with epilepsy?

As part of the intake interview portion of a neuropsychological evaluation, I ask patients to describe the memory problems and difficulties with thinking that they experience in their day-to-day lives.  Here is a "top 10" list of the most frequently reported problems:

1) My problem is with "short-term" memory.  My memory for things that happened 20 years ago is great, but I can't remember what I ate for breakfast yesterday!

2) I am told that I keep asking her the same questions over and over again.

3) I often forget appointments, when I have to be somewhere or go somewhere.

4) My friends/family say I don't listen to anything they tell me.  They say it seems to go in one ear and out the other.

5) There's a word I want to say, but I just can't think of it.  Later in the day, it comes to me.

6) I go to the store and forget what I was supposed to get, or I walk into a room and forget why I went in there.

7) I can't remember the names of new people that I meet.  Or worse, I forget the names of friends that I have known for years!

8) I am having trouble with reading.  I need to reread the page over and over again and it still doesn't sink in.

9) I'm constantly misplacing important belongings such as my cell phone or glasses.

10) I forget to take my medication or I can't remember whether or not I have taken it.

What might make memory worse in epilepsy?

There are many things that may contribute to a worsening of memory problems.  If seizures are not well-controlled and a patient is having frequent seizures, then the probability of memory problems increases.  During a seizure, memory may be affected because a loss or alteration of consciousness can interfere with normal brain processes and disrupt the learning and storage of new information.  The confusion that can occur following a seizure can also prevent memory from working properly.  Some people with epilepsy can experience abnormal electrical activity within the brain between seizures and this can also affect attention and memory functioning.

Patients with temporal lobe epilepsy may have memory difficulties even if seizures are well controlled. This is because the temporal lobe is responsible for creating memories.  Memory problems can sometimes happen due to the side effects of anti-epileptic drugs.  For instance, side effects such as drowsiness or attention problems can affect short-term memory, and may make it more difficult to learn and store new information.  Other factors that may contribute to a worsening of memory problems include: mood (e.g., anxiety or depression), sleep disturbance (insomnia), and age. 

How do you assess for these problems?

If you are concerned about memory changes or other problems with thinking, then your physician may refer you for a neuropsychological evaluation.  A neuropsychological evaluation consists of several parts.  First, you will participate in a clinical interview, where the neuropsychologist gathers information regarding your medical, social, and educational history.  It is sometimes helpful to have family members present during the interview to help provide additional information.  The next part of the evaluation involves the administration of standardized measures that tap into functions such as memory, attention, visuospatial functions, executive functions, and language.  Tests might involve learning stories or lists of words or putting together designs with blocks.  Just as you may have had EEGs or MRIs to look at your brain, neuropsychological testing allows the neuropsychologist to "look" at your brain by making you use it.  The final part of the evaluation typically involves completing questionnaires in which you self-report on your mood and behavior (e.g. quality of life, stress coping).  These last measures are included in a comprehensive evaluation because of the known effects of mood on one's thinking and memory.  

Following the evaluation, the neuropsychologist scores all of the tests and uses standardized norms to compare your performance to that of your same-age peers.  The neuropsychologist writes a report which includes the test findings, areas of cognitive strength and/or weakness, as well as any recommendations which may help manage symptoms or compensate for memory problems in day-to-day life.  When the report is complete, your neuropsychologist will discuss the findings and provide feedback as well as a copy of the report.

How do you find a neuropsychologist?

Most comprehensive epilepsy centers have a neuropsychologist on staff to provide these types of evaluations. Your neurologist or epileptologist may refer you to a particular neuropsychologist in his or her practice.  Otherwise, you may wish to check with your insurance provider to determine which neuropsychologists in your area participate in your plan. 

What is the experience like?

Neuropsychological evaluations are rather lengthy, and may take up to 4-6 hours to complete.  Patients are usually able to complete the evaluation in one day with breaks as needed, but sometimes multiple sessions are required. The tests administered during a neuropsychological evaluation are completely painless and do not involve needles or even electrodes.  Sometimes patients will report feeling tired afterwards because their brain has been given a serious workout, but often patients will say that they actually enjoyed the experience and that certain tests were "fun" or "challenging."  

Can you check over time if things have improved or worsened (when can you re-test)?

In certain cases, your doctor may recommend that you undergo a neuropsychological re-evaluation to assess whether there have been any changes in cognitive performance over time.  This is especially important for patients who have undergone epilepsy surgery.  Such patients will undergo a pre-surgical neuropsychological evaluation to obtain a baseline, and then 6-12 months following surgery they will have a post-surgical neuropsychological evaluation to assess any changes and determine the need for cognitive rehabilitation.  You may also be referred for neuropsychological re-evaluation following a medication change or if you or your family perceive a change in thinking or behavior.

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