Personal Stories

We hope you enjoy reading these personal stories written by real people living with Epilepsy who wish to share their experience.

 

While it is important to share stories about epilepsy with others, it is equally important to remember that no two people experience the exact situation, and what may have worked for one person may not work for another.

Here are a few for your interest:

  • No Turning Back – David’s Story
  • A Ketogenic Life Change – Leah’s Story
  • On An Angel’s Wing – The importance of having good communication with your doctor – Margaret’s Story
  •  Catamenial Seizures and Contraception – Sophie’s Story
  •  Caregivers are usually loving, but what happens if they’re furry, too, and like to lick your face a lot? – Spencer’s Story

Email us your story to share with our readers at enquiries@epilepsycentre.org.au

“No Turning Back”

I think that I have carried a residing fear and anxiety that people would discover I suffered from epileptic seizures for most of my life. I hated wearing the Medic Alert bracelet that my parent’s acquired for me at the age of 13. Wanting for a healthy life, I often felt disadvantaged even deprived by not being able to achieve this. I strove through the period of adolescence becoming more aware of the extent of my problem, not being able to drive or venture forth to do many things others could. I naturally began to feel the effects of lower self–esteem and at times easily became resentful and bitter. It was easy to begin a path of self–pity.

 

Fortunately, many people kept stepping into my path and rescuing me from a total loss of purpose. I had the basis of a Christian upbringing where it was taught “where there is faith there is hope”. Although it did not seem a tangible answer to the problem, it was my grandmother who tried to instill in me, among other things, that in God’s world all things have reason and that “God has a special purpose in mind for you”. She also gave me a book to read. It was “The Power of Positive thinking” by Norman Vincent Peale.

 

I began to develop and rely on my beliefs and live life with a certain degree of security and positive expectancy. It enabled me to cope with the problems we know epilepsy can bring. I was fortunate to have gained employment in a bank after I left school. Despite having the odd complex partial seizure at work, I tried to put them behind me and get on with life.

 

It was 7 years ago though, that I suffered a major accumulation of stress aggravating my usually controlled epilepsy. I began experiencing major tonic clonic seizures often resulting in a trip to hospital. I would become paralyzed down my left side during the worst of these seizures.

 

I took time off work and 4 years ago was blessed with an opportunity to start a new job. My epilepsy had improved and became seizure free for a period … but the pattern of those serious tonic clonic seizures unfortunately re–emerged. My medication was changed to arrest that situation but to no avail.

 

It was becoming apparent to me that my condition was deteriorating whether it was due to age or something else. After a string of different medications, I began to lose hope of ever regaining stability. My own faith and inner strengths were being tested. My wife and children were also wondering when and if the situation would begin to improve for their sakes as well as mine. Following a major episode that landed me in Intensive Care 12 months ago, a process to establish my suitability for surgery was initiated.

 

Then came the EEG’s, Neuro Psychological tests, MRI and CT Speck scans. The part I dreaded most was the stay in the QEH until they captured one of my seizures. I become quite relieved and excited however when this turned out to be a short stay and subsequently advised that I was a suitable candidate for surgery. If deciding to proceed with the operation, it would involve the removal of a 4-5 cm section of my right temporal lobe. The chances of success were around 80-90%.

 

It was not difficult for me to say yes with my wife and 3 children supporting me. For me, it seemed “all things in God’s time” had finally arrived. On 17th November I had my right temporal lobectomy. It was a significant emotional experience for me. I travelled to the very depths of my soul and struck a well of untapped tears. They were to be tears of joy lasting 3 weeks. The operation appears to be a success.

 

The exact manifestation of what has occurred is beyond my comprehension. It is as though a domino effect has occurred. Believing I have broken free from the shackles of my epilepsy has perhaps freed me of fears and anxieties that must have been accompanying it for all those years. In its place I feel I have woken to a perfect existence where some of life’s struggles, pressures and need for acceptance no longer seem to exist.

 

I resumed work 7 weeks after the operation doing everything as per normal. I pray the overriding feeling of joy and thankfulness I experience each day will last forever.

 

David

“Leah’s Story”

Hi…….I’m Leah and this story is about how we fought my epilepsy and how the ketogenic diet has changed my life.

A Hard Time

  • I was 3 years old and had epilepsy and febrile convulsions which were not fun. I have been to numerous neurologists.

 

Now at School

  • I was growing older and I was going to school, that’s when it got harder because I was having 100 seizures a day. I would have to have the teacher hold my hand near roads and it would interrupt my work. My friends didn’t understand, and they still didn’t understand when I explained to them. Some kids teased me, and I would get really upset. There were some times when I thought I’m sick of this….why can’t I be like a normal kid!

 

A Hard Decision

  • My Mum had heard about a diet that helps control epilepsy, on a programme called Good Medicine. She did research on it, and asked me if I would go on it. I wasn’t quite sure but then I said yes. I was ready to face a challenge!

 

A Trip to Melbourne

  • To start the diet we had to go to Melbourne to meet the dietician and the doctor. That was fun, I really liked the dietician.

 

Going To Hospital

  • The whole family went to Melbourne a second time to start the diet. When we got there I was admitted to hospital and I met Liz the nurse co–ordinator and the doctor. I vomited in the shower once. My sister, Rachel, didn’t want to leave me and she cried every time she had to go.

 

Home Again

  • I was really excited to go home. I was on the diet now, and having some yummy meals. I was having less seizures. The dietician was helping Mum and also the ketogenic mailing list. It’s good when me and the other kids on the diet can write letters to each other.

 

Our Success

  • Well I was having 100 seizures a day and now I’m having none. I’m off all my medication. I feel great. Mum has worked really hard seeing she has her own problems.

 

Totally Free

  • One day I will be totally free and won’t need to be on the diet anymore. I’m 11 but I think the diet has changed my life knowing that I’m not the only one on the diet and not the only one that has suffered.

 

Leah

A Message from Leah’s Family
Our daughter Leah is 11 years old. She decided to write down “her story” over 1 year ago so that she could share with others the miracle of good health that the ketogenic diet has brought her.

 

Leah was diagnosed with epilepsy (specifically absence seizures) when she was 3 years of age. Before this she had numerous episodes of febrile convulsions which required hospitalisation.

 

Leah was treated with a myriad of medications and combinations of the same. However her seizures were not controlled and continued to escalate in number.
In late 1999 we first heard of the Ketogenic Diet which has been used to treat children with difficult to control epilepsy for many years … dating back to the early 1920’s. It is only in recent years however that once again it is becoming an accepted therapy. It should always be used under the supervision of a qualified medical practitioner.

 

The diet is a high fat, adequate protein and low carbohydrate diet which many may claim unpalatable, but with time and imagination it can be made acceptable. The diet does seem daunting at first but it gradually becomes a routine which becomes a part of normal family life. It gives me pleasure to plan and prepare Leah’s meals as I see the positive affect on her well being.

 

Our daughter began the diet in February 2000 and within 4 months she was seizure free. Over the next year we weaned her from all medication. It has been truly a miracle to see her emerge from the medications! She has a bright and bubbly personality and enjoys life, including school work!

 

Leah continues under the care of her Adelaide neurologist and we are in contact with the dieticians at the Royal Children’s Hospital in Melbourne, where we initiated the diet.

 

Another invaluable source of support and encouragement have been internet mailing lists … a huge network of parents worldwide with children currently on the diet.

 

We hope sometime in the next year to wean Leah from the diet and pray she will remain seizure free.

 

Janette, Garry, Rachel and Leah

“Catamenial Seizures and Contraception”

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.

 

Sophie

“Caregivers are usually loving, but what happens if they’re furry, too, and like to lick your face a lot?”

Spencer Wyatt, 8, of Dacula, Ga., was diagnosed with epilepsy when he was 3 years old. He’s currently in second grade and got his seizure response dog, Lucia, through the Canine Assistants program this summer. He calls her his best friend. More than that, she is an added caregiver to the family. His mother, Amy, says, “It gives us an extra set of eyes and ears—watching out for him, listening to see if he’s going to have a seizure and then getting help if he is.”

 

Lucia is especially helpful because Spencer has nocturnal seizures and before they got her, Amy had to get up every 30 minutes during the night to check on him. Then they relied on video cameras. Now, they feel reassured to know Lucia is in the room with Spencer at night and can alert them if he’s having a seizure. She gives Spencer an added measure of independence, too, because now if he wants to go outside to play, he doesn’t have to be shadowed by his mother constantly. He has his dog with him—who also happens to be trained in recognizing seizures.

 

“Lucia is the perfect co-ambassador for him because she attracts a lot of attention, which gives Spencer plenty of opportunities to talk to people and explain his condition.”

 

Seizure response dogs are trained to remain next to a person with epilepsy during the course of a seizure and summon help. Certain dogs may even be able to predict and react in advance of an oncoming seizure. So, while they are not a substitute for actual human supervision, they are definitely an added, if slightly unconventional, member of many family caregiver teams.”
At first, the family had to get used to Lucia’s way of signaling them. Amy says, “She’d hop up and begin to whine. The only problem with that was, we thought she had to go to the bathroom.” It turns out she was signaling that Spencer might be about to have a seizure. Amy says several times Lucia has come over to lick her hand and about 15 minutes later, Spencer has had a seizure.

 

Spencer is quite vocal about his epilepsy and enjoys educating people about his condition. Lucia is the perfect co-ambassador for him because she attracts a lot of attention, which gives Spencer plenty of opportunities to talk to people and explain his condition. Amy says the added attention helps get the word out about epilepsy. “It’s changing people’s opinions and ideas and helping to erase the stigma that’s attached to epilepsy, to see this kid that’s so full of life and personality. For him to say, ‘I have epilepsy,’ I think shatters a lot of preconceived notions about what that is.”

 

Amy says they have tried to instill in Spencer the knowledge that while he has a condition some people might view negatively, it’s his job to take his epilepsy and turn it into a positive so he can help other people. He seems to understand. Lucia’s name means “light,” which Spencer likes. He says, “Mom, that’s so cool because when we introduce her to people, it’s like telling people about light—that there can be light in their lives.”

 

Spencer