An Illness Not a Disease – by Andrew Brown

An Illness Not a Disease

Written by Andrew Brown
 
NON-EPILEPTIC SEIZURES – patient information As we discussed at the clinic you know now that the results of the test show that your attacks are not epileptic. You have Non-Epileptic Seizures (NES) or Pseudo-seizures.  Many of the people that we see in this clinic have been told that they suffer from an illness called epilepsy.  Other people have never been given a clear answer at all.  With this leaflet we are hoping to answer some of the questions that you may have about this condition.

What are Non-Epileptic Seizures?
What do you mean by a psychological or emotional cause?
Does that means that I am putting them on?
What makes me have these attacks?
What about the result of the test?
Why was I told that I had epilepsy?
Can Non-Epileptic Seizures be treated?
What about my medication?
What can this clinic do for me?
1-What are Non-Epileptic Seizures?

These are turns that look like epileptic attacks and in fact are often mistaken for epilepsy but, unlike epilepsy, the cause is not due to something being wrong with your brain waves. These attacks are caused by psychological problems (stress, emotional problems, worries).  This is not an uncommon problem. We run a clinic especially for people with these kinds of attacks and we can see up to three new patients a week.  In fact about two out of ten people who are thought to have Untreatable epilepsy suffer from non-epileptic seizures.

2-What do you mean by a psychological or emotional cause?

You may find it very difficult to understand how these attacks are caused by stress or to think of any causes for your turns.  The relationship between your emotional upset or stress and the attack is not always straightforward.  Our body can show stress or distress in a very physical way.  For example some people can be physically sick because of worry.  The person is being sick but the cause is not due to a stomach problem but to stress.  Stress and worries can build up, sometimes without a person being aware of it.  But it may build up to a point that the pressure is too much and you have an attack to let go of the pressure.  We can think of these turns as a way of coping, like a pressure release valve or “time out.”

3-Does that mean that I am putting them on?

NO!  These attacks are a very real problem but the root of the problem is emotional not physical.  The fact that there is not a physical cause for your attacks does not mean that you are “mad” or pretending. What it may mean is that you are more upset or stressed than you realize.  Having these attacks can be very unpleasant and upsetting as well as making your day-to-day life very difficult.

4-What makes me have these attacks?

For some people the problem is related to an unpleasant or traumatic experience from the past.  For others it can be due to a number of different problems.  In some people it takes some time before we find the underlying problems.

5-What about the result of the test?

Recording an attack during a Video EEG test is the best test we have for the
diagnosis of NES.  It is very accurate and we can trust the results.  With this test we are able to monitor your brain waves and take a video recording at the same time.   Your brain waves change depending if you are awake, asleep or even  drowsy. By looking at your brain waves during an attack we can tell if you are unconscious or there is something affecting the way your brain works.  The test has shown that your brain waves did not change or become epileptic before during or after the attacks we recorded.  This confirms the diagnosis of Non-Epileptic Seizures.

6-Why was I told that I had epilepsy?  (By doctors, nurses and paramedics)

The diagnosis of your type of attacks can be difficult. Because the attacks can look so much like epilepsy, they are often confused and treated as epilepsy.  However we now know that NES is not a rare condition.  A psychological cause has to be considered when patients present with attacks that seem difficult to control with medication.  Better tests are also available nowadays to help us with the diagnosis.

7-Can Non-Epileptic Seizures be treated? 

This kind of attack can often be successfully treated.  There are a number of
things we can do to make sure you have a good result.  Some people improve just by having a clear answer and explanation for the attacks.  Knowing what’s wrong with you is helpful in itself.  We think that being looked after by the same people is important for a successful recovery. We will support you through the recovery process and will not pass you on to any other doctors.  You will also be able to see one of the psychologists on our team. They are experienced at helping
people with your kind of attacks.  The psychologist will help you to find the
cause(s) for your attacks and will also help you to have control over the attacks.

8-What about my medication?

You may be taking tablets for epilepsy.  Since you do not suffer from epilepsy it would be inappropriate to keep taking these drugs.  These tablets can have side effects and may make you feel worse.  [However,] it is important not to stop your medication [without seeking medical advice].

Source: NES Research Team, Southern General Hospital, Glasgow, Scotland, UK.