Angela’s story – my brother and epilepsy

"All we could do was talk to him and reassure him calmly while the seizure took hold."

“I’ll never forget the many nights worrying that my brother was going to have an epileptic seizure in his sleep. They happened frequently. His seizures were incredibly frightening for him and oftentimes he would hurt himself badly as he would be flung out of his bed by the seizure activity. As a family, protecting him from this was our main concern but often all we could do was talk to him and reassure him calmly while the seizure took hold.

For a period of time the seizures became evermore frequent, putting him at increased risk of severe injury and also putting strain on his heart. We didn’t know how we could help him anymore.

My brother was referred to the William Quarrier Scottish Epilepsy Centre. With his autism and learning disabilities we were concerned that he might not accept the tests that needed to be done. But a specialist learning disability nurse was on hand to support him. To get that level of care was amazing.

Many tests were undertaken, one involving my brother wearing apparatus on his head with a recording device which monitored his brain activity. We also had to record a seizure so the consultant could witness the sheer force that went through his body that put him at so much risk. We were all hopeful for a good outcome from the tests. Our worry around the worsening of the seizures was huge and we just wished we could take them away.

In effect this is what has happened, to an extent. The consultant provided a medication that needs to be given at the very onset of a seizure that then stops the activity dead. No full-blown seizures anymore! This has been life changing for my brother and we believe it may have saved his life. He’s been able to thrive a bit more in life with the reduced seizure activity and no longer has to go through the frightening experience of the seizures.

We’ll forever be grateful for the support we as a family and my brother got at the epilepsy centre.”

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