Here's the deal, I talk to a lot of brain tumor patients, and caregivers, about seizures. And although none are the same, there are often similarities, and definitely tricks. Even though each person's situation is unique, there is almost always overlap. Last night I received an email from a caregiver about his wife's seizures - a GBM patient. She switched from Keppra to valproic acid and vipmat several months ago, and had been fine, then twice in the past week she has had seizures. Each time she is forced back into the hospital is a major setback. She loses more weight (her weight is hovering in the 70's ), and becomes weaker. In corresponding, I asked him if I could bring it up for discussion on the blog, hoping that people could share their successes and failures to help troubleshoot.
I feel bad because I've talked to so many of you about these issues, the side effects, the trial and error of seizure drugs, the specific triggers, but I can't remember everything that you all have said. Would you be so kind to share, even anonymously? I know it would be a huge help.
I remember when a caregiver told me that he gets his wife's blood levels checked regularly to make sure that her seizure meds are at the correct levels, not too high nor too low. When I heard that I was floored. I had no idea that your blood levels could be checked, or that every body metabolizes drugs differently. That it doesn't have to be trial and error, and it doesn't have to be a shot in the dark. The more we talk the more we know what to ask for, and how to help ourselves.
So if you could please share and answer as many of these questions, or whatever you're comfortable with, both he and I would be incredibly grateful (and please, elaborate, or share what you have found helpful if it hasn't been included on his list below):
My questions are this, if you don't mind:
- Do you get major seizures or minor ones?
- Do you go to the hospital after each one?
- What meds are you on? I see that you wrote about keppra and I think you got yourself off that but I'm not sure what you're on. Do you mind telling me?
- How do you think it works for you?
Here were my answers:
1. I have had a few grand mals, but now have simple partial seizures since I've been able to control them. I take lorazepam when I don't get enough sleep, I'm careful to keep my blood sugar stable, I drink a lot of water, I limit emotional and physical stress, I don't over do stimulation (sunglasses, overheating, loud noises). Every person's seizure triggers are unique.
2. I no longer go to the hospital for seizures. I stopped because it seemed like no point, they just monitor me and pump me full of more drugs.
3. I've tried three different kinds and none stopped the seizures. I can't even remember which ones other than Keppra. So now I just take a lorazepam when I feel an aura coming on.
4. I've been able to manage my seizures quite well. For example, I just had to do a minor surgery in my mouth which causes seizures, it's the epinephrine in the numbing shots which has been well documented in causing seizures in epileptics and I am no exception, so I took 2 mg of alozepram which is heavy duty Xanax and had no problems. Although I did sleep 10 hours afterward.