My Story: I am a 25 year old wife, sister, daughter and friend. This month I had an amazing experience. I received my drivers licence! Off my P’s and all! Most people just expect to get their licence – don’t regard it as anything special. But I truly appreciate it as “the privilege of driving” (as my doctor put it).
Getting my licence was enough to bring tears of joy and relief –
I AM LIKE EVERYONE ELSE, NOW.
I CAN DRIVE!
I AM NORMAL!
… but the bitterness still lingers.
Nobody can truly know the pain of epilepsy ‘till they have been there. No one can really understand the feelings of shame, of dependency, of self–loathe, of denial, and of heartbreak,including the doctors! When I started to have seizures, I was 12¾ years old. I was prescribed Tegretol. The next year, at 13½ I started to have periods. For the next eight years, during all my teenage years, the doctors couldn’t do anything to control my condition. They tried various strengths of Tegretol and two other drugs. Seizures still came, ranging from every 6 weeks to 3 months. In my eyes, I felt that my doctor regarded me as a case that nothing more could be done. Not considering me as a real person, with feelings. At no time did any of my doctors suggest that I could be having catamenial seizures. Seizures related to an imbalance in hormone levels, as a result of monthly menstrual cycles. And that if it was the case, I could take a drug that might help me, by controlling the imbalance of hormones.
After getting married in September ‘96, and looking into contraceptives, I found that I didn’t feel comfortable using the ‘pill’ – Tegretol reduces its effectiveness. So I began looking into alternatives, and came across DepoProvera – an injection of synthetic Progesterone that lasts for three months. As I understand it, it works by telling my body that I am already pregnant, therefore no new egg can be produced. I had the first injection a month before we were married. Our wedding day was successful, with me feeling anxious that the wedding ceremony maybe ruined by epilepsy. A year later, I still had not had another seizure! I was extremely aware of this (as before I had not gone for more than three months without a seizure).
I couldn’t allow myself to believe that my problems were over:– the same wild hope at the age when others were all getting their licences each seizure activity led to repeated bitter disappointments.
I related the absence of seizures to the Vitamin E capsules I’d been taking, at a suggestion that some seizures were connected with low vitamin E levels. To clarify the belief that vitamin E was helping me, I spoke to the Senior Nurse of the Epilepsy Unit at the Queen Elizabeth Hospital. She was eager to help and took me seriously and to my surprise, she didn’t agree with me, but suggested that the contraceptive was doing the trick. She explained about catamenial seizures and how they were related to the monthly cycle. She showed me how a balance of hormones, achieved by DepoProvera might stop the seizures.
I was blown away! I hadn’t even considered that it might be DepoProvera! It was a contraceptive, not an antiepileptic drug. And WHY hadn’t my doctors said anything?? … Armed with this information, I consulted my new doctor. He was sympathetic, but keen to switch the spotlight of the success story back to Tegretol.
Four years later and no seizures, I’m feeling great and eight years with epilepsy seem to be fading to a bad dream. DepoProvera remains unacknowledged by doctors, in my situation. I cannot back my story through medical journals and technical terms. But one thing I can do is speak out about what happened to me, and not continue the silence.