Sometimes it is possible to figure out what triggers a person’s seizures. Robert has a few seizure triggers that I know of: caffeine, a change in routine and intense emotions (such as anger). Even if I were able to eliminate all of these triggers, Robert would still have uncontrolled seizures as he most often has them without any sort of rhyme or reason.
|I can't deny Robert his Double Chocolate Chip|
Robert figured out on his own early on that caffeine was a seizure trigger for him. He drinks decaf coffee and non-caffeinated sodas when he wants a soda. I know “decaf” (and those chocolate shakes) has some caffeine in them but near as much as the fully-loaded coffee.
Of course, there are trade-offs. Robert really, really enjoys having decaf coffee in the morning and the occasional frequent treat of a chocolate shake. (In my defense, the Starbucks Frappuccino we order for him is supposedly caffeine-free). Should I ban anything even with a trace of caffeine in the hopes it will reduce Robert’s seizures? I might, actually, if I thought it would make a huge difference. I don’t think it would make enough of a difference, though, to have Robert sacrifice things he loves.
Change in routine is a bigger trigger for Robert as is any intense emotion. His neurologist thinks it is very possible that his recent seizure cluster could have been triggered by Robert’s anticipation and excitement about going on vacation to Disneyland!
I can’t very well take that sort of opportunity away from Robert! I can manage the seizure clusters better – the neurologist gave me the green-light to give him 2 mg of Ativan when the cluster starts instead of just 1 mg. It’s possible he has become too tolerant of the lower dose.
Aside from throwing Robert’s routine and emotions into a tizzy by taking him on vacation, we typically stick to a pretty solid routine. He wakes up at the same time every day (except weekends, when I let him sleep in a bit). His morning routine is the same every day (up, shower, dress, eat, brush his teeth and hair and shave), he mainly eats the same breakfast (oatmeal and toast) and lunch (turkey and cheese sandwich) every day and his night time ritual (pjs, dinner, brushing his teeth and hair and shaving) is pretty much the same as well (except for our Friday Night Dinners out!).
I like to keep Robert on an even keel and stick to a routine without being too regimented and inflexible. It is a balancing act of keeping Robert happy and keeping the seizures to a minimum.
Routine is important to Robert to the point of having an almost OCD quality to it. He counts the number of bites he takes at dinner and the number of drinks of his milk. He counts how many bites of Rocky Road ice cream he has had and then rinses out his mouth seven times after brushing his teeth. If he needs to rinse more than that, then he does it in multiples of seven.
Seven is an important number to Robert because he says it is a number that means a blessing from God. (I don’t know anything about that so have to take his word for it.)
For the most part, we stick to a routine, we keep him on an even emotional level and we stay away from caffeine.
Sometimes, though, we’re not afraid to mix it up with a vacation or some excitement and that is a trade-off we make and one that everyone makes when dealing with the unpredictability of seizures.
In this video, Robert talks about his nighttime routine.
I would love to know more about your seizure triggers so please feel free to leave a comment about them and if you avoid the trigger at all costs.