Donna – Interview 15

Donna was diagnosed with temporal lobe epilepsy when she was 3. She had very severe and frequent seizures for years. She had neurosurgery two years before the interview and has been seizure-free since.

Donna is 28 and a full-time mum to her 4-year-old-daughter. Donna was diagnosed with temporal lobe epilepsy when she was 3. Two years before the interview Donna had neurosurgery to treat her epilepsy and she has been seizure-free since. At the time of the interview she was coming to the end of the surgery programme and was due to stop all epilepsy medication within the next few months.

She says school was hard for her as she wasn’t allowed to do things she loved, like swimming and trampolining. After leaving school, she did a training course and worked with children with disabilities for a while. Then she moved onto doing other jobs but Donna says epilepsy stopped her keeping employment as her seizures were so frequent. At worst, Donna was having 40-50 seizures per month. She hasn’t been able to work for 12 years. She has however been doing voluntary work and after her surgery programme can again do more of that.

Donna always knew she wanted to have a child and at 23 she and her husband decided to go ahead. She was on Epilim (sodium valproate) at the time. She had to come off it and start taking folic acid before trying for a baby. She said being pregnant was a really worrying time for her as she was having seizures and once she fell down the stairs. Happily, she gave birth to a healthy baby and she says having her daughter was the best thing she has done.

When she was 25, Donna’ doctor suggested the option of neurosurgery; the medication wasn’t working and her seizures were out of control. Her epilepsy was caused by a localised scar in the brain which made her a potential candidate for surgery. The surgery was preceded by two years of tests and Donna had her surgery in June 2005. She says the mental and emotional recovery from the surgery has been extremely hard; learning to live without epileps has been one of the hardest things she has had to do. She says after surgery she tried to put right 25 years of her life in 6 months, and wore herself out. As a result, she has suffered with depression and is only now starting to come through it all. Despite the bad times Donna says she doesnt’ regret having the surgery and she is now seizure-free!

Donna’s journey with epilepsy has been long and hard – she says it’s her own character that has pulled her through, as well as trying to focus on things that I have got, not what I haven’t go.

The Expert Patients Programme helped Donna learn more about managing chronic conditions and share…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna had severe depression after brain surgery. Counselling, antidepressants and time helped her.

Age at interview 28

Gender Female

Age at diagnosis 3

School was very difficult for Donna. Because of her medication, she often felt tired, couldn’t…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna says surgery was ‘the hardest but the best’ thing she did. She advises others to pace…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna found it difficult to adapt to a seizure-free life. After 25 years, she felt epilepsy was a…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna has been seizure-free since her surgery. Her memory and concentration are much better and…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna couldn’t go out or drink when she was younger because her seizures were really bad. She…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna finds it harder to get back into work the longer she’s been out of it. She’s now looking…

Age at interview 28

Gender Female

Age at diagnosis 3

At her worst, Donna had fifty complex partial seizures a month and injured herself many times.

Age at interview 28

Gender Female

Age at diagnosis 3

Donna was ‘over the moon’ when she had a healthy baby. She felt she missed out on a lot with her…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna says her pregnancy was a constant worry and she had many seizures. She was well cared for…

Age at interview 28

Gender Female

Age at diagnosis 3

When Donna and her husband started to plan for pregnancy, Donna had to gradually come off Epilim…

Age at interview 28

Gender Female

Age at diagnosis 3

When Donna’s epilepsy was really bad, she became dependent on her husband. Their relationship…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna fell down the stairs when she had a seizure during her pregnancy but the baby was fine.

Age at interview 28

Gender Female

Age at diagnosis 3

Donna describes the first few days on the ward after her surgery. Back at home, she didn’t want…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna wanted an antidepressant to help with her moods, including anger, but she was just given…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna’s consultant suggested brain surgery because none of the AEDS had controlled her seizures…

Age at interview 28

Gender Female

Age at diagnosis 3

Donna describes the various tests she had to find out if surgery might help her. The type of…

Age at interview 28

Gender Female

Age at diagnosis 3