Alyce-Jayne Stockdale, of Burnley, has endured blackouts daily since she was 18 months old and her condition means she is dependent on round-the-clock care.
The 21-year-old has had scores of brain operations but her condition is worsening and she has pinned her hopes on a radical new “deep brain stimulation” treatment.
But the accomplished showjumper claims she has now been left in the dark about the pioneering surgery after being promised the op by neurology specialists in the North-East last October.
Alyce-Jayne knows the dangers of the complex brain surgery, but she is pleading with Newcastle upon Tyne Hospitals NHS Foundation Trust to set a date for the operation she hopes will give her a normal life again.
“On a bad day I would rather die than live with the condition,” she said. “It is torture.”
“I am scared about what might happen with this new operation as it is deep brain surgery. I just hope it will improve my condition.”
Her brother Warren (30), a human rights law student at UCLan, claims it is unfair for the hospital to keep her in the dark about the operation.
He said: “It is a daily recurring nightmare for her. She has suffered all her life. She was promised an operation last year.
“It would be a life changing operation for her. It is not fair to get her hopes up like that. She was been waiting and phoning up to try to get details about the operation but she has been pushed from pillar to post.
“Now she is thinking ‘are they going to do it or are they not going to do it?’ She just wants answers.”
The condition deprived her of a normal childhood and she was confined to a wheelchair throughout high school.
She has undergone countless operations up to last year when she was given a corpus callosotomy in which part of the brain is severed to prevent epileptic seizures.
The procedure looked to have worked but two weeks later her condition worsened and now she has difficulty speaking.
But surgeons offered her fresh hope with promise of a “deep brain stimulation” operation which involves inserting a metal pacemaker into the brain. However, the treatment, used on Parkinson’s Disease patients, has yet to be used to treat epilepsy. Neurologists from the Newcastle hospital will have to be sent for special training to carry out the operation.
A spokesman for Newcastle upon Tyne NHS Foundation Trust said it did comment on individual cases and would discuss the matter directly with Alyce-Jayne.