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STARS Patient Information

Amanda's Story

My story is one of misdiagnosis. I was properly diagnosed in 2004 at the age of 24-25 (can't quite remember if I'd had my birthday yet that year). I'll never forget the year because it was the year that my husband had cancer (but that's a whole other story).

On Christmas morning at the age of 8, my mother was curling my hair with a curling iron when she accidentally burned my forehead. The next thing I remember is waking up on the floor and my mother was panicked. I was rushed to the ER where they checked me out and sent me home with a referral to a neurologist. The next few weeks were full of tests. EEG, CT scans, etc. All came back normal. My parents were told to not worry and that many times, seizures are isolated incidents.

About a year later, I knocked heads with a friend while playing outside. I lost consciousness but my friend hadn't noticed because he was busy running home crying. I told my mom that it had felt like the last time and she took me back to the doctor. They didn't do anything because there were no witnesses that could verify that there had been a seizure and not just lost consciousness. A month later, I fell off a swing set (clumsy kid, right?). This time, there were plenty of witnesses. Next came more doctors and more tests (all normal) but I was given a diagnosis of epilepsy and ended up on Tegretol.

I took my medication throughout most of my teenage years. And it was 5 years before I had another seizure – again triggered by a bump to the head. This was at age 14. Three years later, I had a series of them - three in 4 months. We went to see a new neurologist. He increased my medication dosage. About this time, I started to suspect that I wasn't having traditional epileptic seizures. Why could no one explain that mine always had a traumatic trigger? Why were my tests always normal? The answer that I was given to this last question was that "sometimes we just don't know what causes seizures and often tests come back normal".

Frustrated and rebellious as a teenager, I stopped taking the medicine. I'd been warned that not taking it was dangerous and could lead to more seizures but I was so tired of living life in a drug-induced haze. I slowly took myself off of it knowing that quitting cold turkey was very dangerous. Only after I'd moved out of my parents’ house at age 19, did I tell my mother that I had stopped the medicine. Naturally, she was worried.

Married at age 21, I moved a few hours away from home. I fell down some stairs one day and had a seizure in front of my husband for the first time. He had grown up in a family with a strong history of epilepsy and thankfully didn't panic. He also didn't pressure me to go to the doctor because, to him, it was no big deal.

But then came the year 2004, when I was 24-25. I must have been 24 at the time because it was shortly after my husband's cancer diagnosis (he's healthy now, by the way). We both had pneumonia and we were at the doctor's office for a follow-up visit. The doctor decided to take a blood sample from me. Typically, the sight of blood doesn't bother me in any way. Knowing what I know now and looking back, I think it was the fact that I had been sitting with my legs dangling off an examination table for twenty minutes that caused my blood to pool in my legs. But when the nurse drew the blood, I started feeling that familiar dizzy, clammy, tunnel-vision coming on. My husband was quickly aware of what was about to happen and instructed the nurse to lay me down. 

Naturally, since this happened in a doctor's office, they weren't going to just let me go home. They sent me straight to the neurologist on call at the hospital. When I described to him all the experiences I'd had with seizures, he looked at me and said the most beautiful words, "I don't think you have epilepsy". He told me about Vasovagal Syncope and Reflex Anoxic Seizures. Everything he said sounded just like what I experienced. He ordered a Tilt Table Test to be sure.

I was anxious about the test but I knew that I wanted to know what was really wrong with me. Within 15 minutes on that table, I felt it starting to happen. The technician later asked me why I didn't call out to her and let her know it was going to happen so that she could lower the table in time. I told her that I wanted it to happen because I wanted to know for sure. I let go and let it happen. When she showed me the readings that showed my heart stopping and therefore confirming my diagnosis, I cried tears of joy. Yes, it was scary to see your heart stop on a monitor, but less scary knowing that it isn't life-threatening.

I've had only one other RAS incident since my proper diagnosis and that was at age 26. I'm 31 now. I honestly believe that knowing the mechanism behind what is happening helps me to calm down when I am injured, breathe deeply, and lay down. I feel like I've averted a few attacks this way. Perhaps this is something that I can control sometimes.

 


Get in touch for more help and information

+44 (0) 1789 867 503info@stars.org.uk

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