Epilepsy - An eefo.net user’s Story

Feeling Different

We are all different in many ways, we are all unique. As a teenager I wanted to be an individual but not different from my friends. I was diagnosed with epilepsy following two fits - I am now different - I have a label - I am epileptic.

I spent the few months, after I was told of my ’condition’, doing what everyone else wanted, not because I felt pressured but it just felt that this was all happening to someone else and I was just watching. I had to listen to lots of jargon - carbamezapine, phenytoin, tonic clonic, grand mal, petite mal - and undertake lots of tests (brain scan, EEG) all of which went over my head. Fortunately, my neurologist was very helpful even though he probably could tell I was a little confused. I was put on tablets but these, fortunately, don’t give me any side effects.

The worst things about being diagnosed as epileptic are:

· Independence

I live in a rural area and therefore getting a driving licence and a car was a great milestone. I could go out without my parents needing to collect me. Being diagnosed as epileptic meant that I couldn’t drive - my licence was removed for two years and my car sold. I felt I was standing still and everyone was rushing past me getting on with their lives. Since I had my driving licence returned - I haven’t looked back.

· Privacy

For 4 months I wasn’t able to have a bath with the door locked and we had to have a shower installed.

· Confidence

If I go out am I going to have a fit ? What will my friends think of me ? Will they still want to be my friends ?

I found that I got over the ’shock’ of being diagnosed as epileptic fairly quickly. It is advisable that you inform the people closest to you that you have the condition (so that they can help if you have any problems) and also to let people know that it is not a taboo subject - you can lead a normal life with epilepsy - you just need to be careful in certain situations.

Additional Information

•	Finding Information Contact your doctor (they should be able to point you in the right direction), use the internet and look for recognised sites such as the British Epilepsy Association (www.epilepsy.org.uk)
•	Employment I am lucky, being epileptic hasn’t affected my employment, career prospects - it would be worth discussing this with your careers advisor if you have any concerns. There may be some jobs that need further thought such as driving jobs.
•	Driving Diagnosed epileptics lose their licences (for a period of time) on medical grounds - different types of epilepsy attract different restrictions, your doctor should be able to advise you of the differences or contacting the British Epilepsy Association should help.
•	Support Groups I initially didn’t want to join a support group as I felt I was isolating myself with other people who had a problem and it highlighted the fact that I was different from my friends. I have since joined the British Epilepsy Association and it is good to know that there are other people out there who may have experienced the same problems as me.
•	Medication I was very lucky as my ideal medication was found quickly, some people are not so fortunate but with drug therapy improving all the time side effects are reducing. I have to ’pop a few pills’ every day but I don’t have any side effects.
•	Alcohol When I was first diagnosed I was told not to drink alcohol in great quantities as it could interfere with my medication. I ignored this advice and had another fit ! I now listen to my Doctor’s advice and don’t drink - it does mean that I am the general taxi (as I have my licence back) but I now value my ability to drive so greatly that I don’t mind and anyway I never wake up with a hangover !!
•	Pregnancy If you are epileptic and thinking of having a baby it is important to discuss this with your doctor as there may be alterations that need to be made to your medication so that your health and that of your unborn baby are not affected.

Written by a www.eefo.net user

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