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Nov 11, 2017 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

I was 30 years old at my ‘first’ grand mal seizure. I am now 42 and nearly a year out from my third surgery. Seizure free. 🙂 My history: My seizures stemmed from infantile, prolonged, high fever convulsions before I was a year old. I was put on medication until I was two and weened off.
At 30, I had a grand mal that opened the door to more grand mal, partial complex and absence seizures. Right temporal lobe. Refractory, intractable. Like your daughter, seizures still increased and got worse as well. I was put on multiple medication combinations that did not work. Wow, A rollercoaster of ins and outs. Being patient with yourself, others and coworkers. After my first craniotomy failed one year to the day after surgery in 2012, I took a job change and a huge pay cut to go along with it. I tried other medications and lifestyle changes to keep the seizures at bay. They are elusive, invasive creatures, especially to an adult who has been living their life fully, and then, this happens? We have One Life, One Brain, One Body. We fight for that. *Surgery is my only option to be seizure free.* I went to Mayo Clinic in 2016.
Be patient through the process and listen to the neurologists. The answers are there, Mayo is great and has wonderful staff.

Nov 11, 2017 · Been to an Epilepsy Monitoring Unit? What’s it like? in Epilepsy & Seizures

When the monitoring unit did not capture seizures, and I was having multiple seizures at a different rate, the Epilepsy Board decided to take me on still as a surgical patient. The next step was to find out where they were coming from exactly. I had a stereo EEG, or SEEG at Mayo. This is an inpatient, innercranial EEG, where the leads are placed directly inside to finite the exact area of seizing for surgery. You are under anesthesia the entire time, and it could take anywhere from one day up to a month to seize. Very scary being under that long… they scared the seizure out of me. I seized in one day.

Nov 11, 2017 · Been to an Epilepsy Monitoring Unit? What’s it like? in Epilepsy & Seizures

I was there in January of last year. Although they were not able to capture seizures at that time, I was accepted as as a surgical patient. I made a return visit in May for further testing to capture the seizures necessary for the focal point. As of today, I am now over 10 months seizure free after my third surgery. Just like in your son’s case, it is hard but very necessary. I’m thankful as well.

Nov 11, 2017 · Been to an Epilepsy Monitoring Unit? What’s it like? in Epilepsy & Seizures

In reading the comments here, my experience was completely different. I was hooked up for five days and did not have a seizure at all. On the sixth day, I went home. Being strapped in the harness at the unit and only having the access to walk from bed to bath was nutty. I know I was there, ‘seizing for a reason’, but the walls grow you fast. Two days later after I left the unit, I had a grand mal.