Change Font Size
The story toolbox
Show all tools

Points for Reflection

1. Patients may be the first to suggest that a condition is inherited in their own family. How seriously do you as a healthcare practitioner take this suggestion?

2. Are you able to take a three generational family history and draw a clear family tree?

Activities

1. How would you have dealt with the concerns of Mary’s family following her initial seizure? Would you have provided them with the diagnosis in the same way?

2. Using the resources available to you, what is the current understanding regarding the genetic factor(s) involved in epilepsy?

Quotes

"You asked what more could be done; in my case I would say find a way to speak to the family of the person who has epilepsy especially if they are adults"

"I realise now that I could have contacted the nurse more than I did"

Further information

Epilepsy Action

Epilepsy Research Foundation have a number of leafletsthat can be downloaded.

US National Library of Medicine, Genetics Home Reference - Epilepsy


Location: The Stories
Transcript

You can download the full transcript here

Mary’s story: My epilepsy
Living with the complexities of a multi-factorial condition

I can remember that first migraine when I was 28 years old even though I am now 64 because it started like a headache but became so severe it was nothing like a headache and it did not ease until I was physically sick. This became common before a period. In those days they could not do much for me except give me something for pain.

Aged 39 I had my first seizure. I am sure I had some absences first. I seem to try to get away from it even though I don’t know anything about it. I tried to go upstairs when I had my first seizure. My family almost went into shock at my actions and called an ambulance, they thought I had fallen down the stairs. They said that the doctor said to them has your mum got epilepsy, they said no nothing like that, the doctor said well she has now. They sent me to the hospital in London as an out patient. Over about 5 years I had some tests with no success, I did make a point of telling the neurosurgeon that the migraines had stopped completely as soon as the seizures started and was told this was coincidence and was just told to keep taking the phenytoin. In the process of all this he did tell me to take Epilim. This seemed to stop the seizures but the migraine returned worse than ever before and I took it for almost 6 weeks because he said try to get used to it and then I had to stop and tell him I could not do this any more.

When I was told to come back in 6 months time again it was not to see the top neurosurgeon again but his assistant who asked me how many seizures I had in the last 6 months and how I felt. My answers did not seem to make the slightest difference and it was just a case of keep taking the pills and come back in 6 months time again. After a few years of this I decided it was not worth the trip and gave up going there. Over the following years the seizures changed to mostly at night and about every 2 weeks. About a year ago my GP changed and he said I should not be doing this on my own and sent me to a different hospital. This neurosurgeon asked a lot of questions then said come back in 6 months, for the first time a nurse was mentioned but I did not take in what he meant. I went back after 6 months and the neurosurgeon said she had a plan A and a plan B. She then told me more about the nurse I could phone if I wanted to. Plan A was a new drug. This reacted the same as Epilim I went back to find I had another new GP.

This one is different and better than any I have had before. He said I should try plan B but he wanted to see me every week to see what was happening and how I was reacting. He saw that my reaction was the same again. Because he was interested I told him about my own theories of the connection with migraine and the work I had done on the internet reading about the work being done on people who started their seizures in middle age. He asked me to print all I could find that I thought could refer to me. He read everything I had printed. He asked me what I thought of it and why.

I said yes I have epilepsy and migraine is a priority. I would like to have migraine pills and also keep taking the pills for seizures. He said it made sense and gave me both. I have been to see him every week and we are both impressed that I have not had any seizures for nearly 7 weeks but both know we must wait to see if I get used to them and what happens next, I realise now that I could have contacted the nurse more than I did but I doubt that I would have been able to get this reaction as she would have to refer to the neurosurgeon who would not have spent so much time on me.

You asked what more could be done; in my case I would say find a way to speak to the family of the person who has epilepsy especially if they are adults. Even a letter asking how is your mum with her epilepsy. I doubt that you would get a reply but it may be a start.

My conclusion about inheritance of my epilepsy

- Grandmother - seizures starting middleage.

- Mother - Middle aged. Fainted, appeared to have absence, was in hospital for a week, recovered, did NOT develop seizures.

- 3 Sisters - did not develop any of these signs.

- Me - developed migraine age 28. First seizure age 39 when all signs of migraine stopped. Was told by hospital that I have left temporal lobe epilepsy. They could not find a reason. I get no warning for seizures.

- I believe that this epilepsy is inherited. But that I had to inherit two things. 1 A fault in gene 2 A low seizure level in the nerve in my left temporal lobe.

- This gene will have affected a sex hormone that caused an effect on the nerve in the left temporal lobe at the menopause.

- At the start of my menopause the neurotransmitters reacted to the left temporal lobe nerve with the low seizure level, that had also been affected by the migraine.

- An encyclopaedia on neurotransmitters says: It is important to appreciate that it is the receptor that dictates the neurotransmitter’s effects.

- It is common for a woman with epilepsy to have a change in her seizures during the menopause. For me the change was from migraine to seizures.

I believe that as the treatment I have had for epilepsy has not stopped the seizures I should be treated for migraine and epilepsy but the priority treatment should be for migraine and epilepsy should be secondary.

My conclusions are from what I believe I have inherited and from my reactions to the pills I have taken over 25 years of epilepsy.