We were sitting in the neuro-psychologist’s office working on symptom management when it hit. At first it was just a stiffening of my body and my head falling to the side, then I began to jerk and a twisting seizure took control.
Dr. M’s office is on the ground floor in the rehabilitation wing of the Greenville Memorial Hospital. Dr. M became concerned as the seizure progressed. She insisted on bringing in a nurse and returned with two. They checked my pulse, reminded me to breathe and watched as my body twisted backwards on the small couch.
They were concerned and very much wanted to send me over to the ER. “she needs to be evaluated!” they stressed.
But Joe very firmly said, “Nope! We aren’t doing that!” He wanted to just give me meds and wait it out. He knew an ER visit would include unnecessary tests and drama we didn’t need. And he knew how much I dislike the ER.
Dr. M called Dr. W, my neurologist, who agreed with Joe. If things got worse she wanted us to call her and she’d meet us at the ER, but for now we were to wait it out.
And so we did.
Thirty minutes later the seizing died down and another thirty minutes passed before we were able to leave.
This seizure came out of nowhere. And we felt rather blindsided. I wasn’t fighting a cold, the flu or any other such infection. I was taking my pills as ordered. Where had this come from?
I had several of the harsh twisting seizures, but the majority of my seizures have been what we are calling, “the staring seizures”. In these I will suddenly just be staring without seeing, unable to respond and if they are long enough, I may fall if standing or slowly slump over if sitting. One day I fell off the couch. =) Breathing is often an issue with these “staring seizures”.
“Your migraine pills!” Joe exclaimed one evening about two weeks later. “that’s the only thing that’s different!” And sure enough, Approximately three weeks before the seizure in Dr. M’s office, Dr. W. had decided to change my migraine medication.
The topamax was causing several problematic side effects such as tiredness, loss of coordination, tingling of the hands/feet, confusion, slowed thinking, memory problems, and speech/language problems. But the most vexing effect was word retrieval. The word retrieval seemed to get worse by the week. I would tell Joe, “could you get me that blanket from…from….from… that thing you sit on.” meaning the couch. Or I would be giving someone directions and say, “you need to turn at the…. place where cars stop on the road and there’s that thing up top that tells you when to stop or go.” meaning a traffic light. This was what made my nuero finally decide to change.
So she switched me to zonegran and about three weeks later the fireworks began. After Joe mentioned that perhaps this could be the problem, my mom and I researched the side effects of zonegran and the effects of coming off topamax. Sure enough! My nausea and vomiting were withdrawal effects of topamax and “increased seizures” was a side effect of zonegran.
Topamax and Zonegran are both seizure preventatives that can also be used as a migraine preventative. Dr. Raxlen said using these medications can be a tricky business. When you start working in that area of the brain it can be difficult to find the right medication because, depending on the person , the drug can be just as likely to induce a seizure as to prevent one.
I stopped taking the zonegran and the seizures have been subsiding ever since. I had been having up to three or four of the staring seizures every day. They could be anywhere from 15 seconds to a few minutes.
So now I am not on any type of migraine preventive, which I find a bit scary. I started using Olaf the Oxygen when a migraine starts and he has been helpful in lessening the pain and helping me to fall asleep so I can sleep it off.
I had been taking Lamictal as a seizure preventative and my dosage has been doubled for now, but I’m still having a bit of trouble especially when in a noisy group. The dystonia has been more active and I still have the staring spells every once in a while.
On Tuesday I went grocery shopping with my mom, sister and sis-in-law. I did pretty well, with my dystonia acting up only a little.
That night my brain decided to let me know it didn’t appreciate the big day and we had a seizure, my body twisting and curling backward. The next day I couldn’t get out of bed or I was pulling and jerking quite nicely. But it didn’t kill me and I’m glad I went! It was a fun day. We were in dire need of groceries and I even found an old suitcase to add to my collection of things vintage.