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Gray Matter Heterotopia and Living a normal life
Sat, 10/31/2015 - 15:14Good afternoon everyone,
I am new here. My name is Emily and I am a 25 year old single mother. I was diagnosed in May of 2015 with epilepsy. I had two grand mal seizures (within a week of each other) that landed me in the emergency room both times. I lost consciousness both times for over 5 minutes. The first seizure they told me was isolated and to return to a normal life. The second seizure occurred while driving to pick up my son. Thank God I didn't hurt myself or anyone else in the accident. I lost my license for 3 months.
After MRI/EEG/CT scans, they found I have supependymal gray matter heterotopia and diagnosed me with epilepsy. Over the past almost 5 months, since my diagnosis, I've been taking Keppra daily. They have upped the medicine and maxed out my dose to 1500mg twice a day. I've still been having several "absent/absence" seizures. Where I space out or can't finish my sentences. So my nuerologist now has me on Keppra and Trileptal.
My question for anyone in the same situation is, will I ever go back to living a 'normal' life? My nuerologist says "yes".. But I constantly feel dizzy, tired, irritated. And I have severe anxiety with driving.. And I play flashbacks of my grand mal seizures frequently. Growing up I was always very active. I was outgoing, extroverted, wild. I played 4 sports growing up and never experienced any issues until I was 25. It makes me so nervous because it's my brain that is being affected. I don't want to "bubble wrap" myself and be afraid to live. I just constantly fear that I'm going to never be back to normal. Any help or support or advice is greatly appreciated!
Thanks for your time!
-Emily
Hi Emily!I know exactly what
Submitted by cella98 on Sun, 2018-12-09 - 22:00
Hi Emily!I know exactly what you're going through.When I was 16 I had my first seizure and was also diagnosed with supependymal gray matter heterotopia at that time. I was just about getting ready to drive at that time and they took away my license. It was a hard time for me since everyone around me was driving and dealing with normal teenage problems when I had to deal with the shock of being diagnosed with not only epilepsy, but a very rare disease. I'm 20 years old now and I can't even tell you how many medications I've been on that don't work. I'm still not allowed to drive and my seizures stop me from doing a lot of things. A lot of people ask me "how often do you get them" but there really isn't a 'schedule' per se... they just come randomly. I could be seizure free for a month and get hopeful and then have another two seizures and become depressed again.Currently, I'm on 3 anti-seizure medications and 2 antidepressants. The doses for the anti-seizure meds are very high and the side effects are ridiculous. So, my neurologist decided that it was time we try something different. It's called VNS Therapy. This is their official website: https://us.livanova.cyberonics.com/home Basically, they implant a battery inside your chest underneath your collarbone and attach a wire to the vagus nerve that attaches to the brain. This battery sends signals to the brain if you start to have a seizure. The surgery is a couple hours and is outpatient, so you usually leave the same day.I did this procedure a couple days ago, so I can't really say my life has changed. The only side effect is a hoarse voice, but I'd rather have that than seizures. I'm just hoping it works because nothing else has and since you seem to be in a similar situation as me, I hope you can bring this up to your doctors and see what they think :)