Hi again,
Sorry for taking so long to reply - thank you for your in-depth replies! I was about to start a thread on low-stress jobs, but then I googled
site:coping-with-epilepsy.com jobs
and of course, the threads were already there. e.g. <I wanted to post links but can't, anyway, it's easy enough to google what I just said and find the most appropriate links.>
It's good forum etiquette to not create threads if there is an identical thread in existence, so I stopped. I'm really busy at work atm anyway, and will be for another week.
Thanks VERY much meetz, for that list. I'm digesting it now. It all sounds logical. While there is nothing there I'm really unfamiliar with as a seizure trigger, it's good to refresh and get a comprehensive list.
Another thing to put on there is probably sleep walking. This is something that she does and is E related, I can't remember what the relationship is exactly (it's something like if she sleep walks, she will get a seizure, or she never gets a seizure without sleep walking, or something like that).
I don't know if she gets auras. The blue tinted polarized glasses was new to me. People have suggested diets to her before, but she has shrugged that off as "only for kids". The eating is definitely true - she needs to eat before bed for sure. Interesting that you suggest both carb and protein. Makes sense, because as far as macro nutrients go, you certainly need a minimum protein grams, a minimum calorie intake, and probably a level of polyunsaturated fats for cell walls and your omega 3s.
I'm going to put my electrical engineer's hat on. (Please correct any errors I make.) E is basically, at the neuron level, neurons firing when they shouldn't. You can think of a neuron as a "black box" - basically something that you don't necessarily know the inner workings of but it gives outputs (firing in a manner that triggers a seizure) to some combination of inputs*. The process of "fixing" E or seizure reduction is to reverse engineer this black box - to determine what combination of inputs is going to set about this unwanted output. The next step in that process is to engineer a lifestyle that will eliminate the inputs that will trigger the unwanted outputs.
The first step of course is the journal - to start cataloging inputs and outputs in a methodical and comprehensive manner. You will probably need help during seizure times to enlist someone else's help post seizure in case you forget. And it may pay to have some sort of listening device to record seizures during the night. It will probably be really obvious if looking at a waveform during the day. (this will help the modeling process, because it will give you more output data to match with the inputs - the ultimate goal will be to eliminate these mini-seizures as well).
After you have done that for a few months, you are then ready to start trying to model the black box - which inputs cause a seizure? Are they cumulative? (e.g. does lots of triggers over several days bring on a seizure?) Are they additive? e.g. it is highly likely that say, doing a load of washing, getting a little less sleep than normal, just before TOM will add together to bring on a seizure. I would suspect so.
After you can successfully model your neurons to the point where you can predict seizures, you are ready to start engineering your life. Probably the biggest problems are the unforeseen circumstances. However, lots of stuff IS actually preventable. For example, my sister has started to implement a rule of turning the phone off at 8:00pm. This prevents people calling her and getting her worked up before bed. After you make a rule and stick to it, people start to respect it and work around it.
This is similar to the risk management approach used by OH&S, by insurance companies etc. You go through each of the triggers and methodically ask "how can I prevent this?" You then come up with an action plan to prevent each trigger (or group of them). Insurance companies do this same process with the things they insure, and then mandate that the insured follow certain guidelines. The guidelines virtually eliminate the risk. So they then get to collect the premiums while paying far less in claims. This process works!
Another thing you can probably do around this stage is experiment a bit. e.g. the diets meetz mentioned, and various other ideas. If there is smoke there may be fire. It pays to experiment. Obviously neurons are floating around in a sea of chemicals which they respond to, and diet obviously affects the makeup of this chemical bath. So experiment! You may learn something.
I imagine that the neurofeedback idea is useful in managing the brain, because it looks like how you "drive" your brain also affects seizures. So, if you can figure out (or use available research) to figure out what sort of driving patterns will increase likelihood of seizures, you can learn to drive your brain in such a way as to reduce seizures.
All of these things add up. They are all controllable. You just have to realize that you have been given a machine (brain) that is a bit finicky and needs to be babied. It's like a car - sure, you can run the engine just under redline all the time. You can drop the clutch, ride the clutch, accelerate fast over bumps, take it fast over gravel roads, and accelerate at high rpm just after turning on the ignition. Sure, it is "within specifications" to do all of these things. But the rate of wear is much higher (even if it isn't explained in the manual)! The car will start dying after a short time and probably be in and out of the shop all the time due to components wearing out.
Another person who drives the same model car may get 1,000,000km out of it, by keeping up with the preventative maintenance and never doing the above things I mentioned. He might drive at at a maximum of 80km/h and never fully accelerate, and wait until he is in gear before properly accelerating. He may time the accelerations so that he only accelerates when he knows that he won't have to stop by braking. This means that the car is only under stress to do the work it has to do (move the car forward), not excess work (move the car forward only to brake).
Anyway, I should get to bed. At a later date, I will post a document I wrote out for my sister and also a spreadsheet for a proposed model. Maybe someone here will find it useful, or it can be used as the genesis of a new, even better spreadsheet.
* Inputs to the neurons firing - will likely be reducible to previous and current firing patterns, and the chemical milieu including stress chemicals the neurons are bathed in. Really, what else
could cause a neuron to fire in a strange way? Anything that could conceivably cause one of these changes (change in firing or change in brain chemistry) could be a valid input. However, when I talk of inputs I mean primarily things that can be identified and preferably, controlled in one's life.
So for example, here is a hypothetical causal chain:
Do a load of laundry:
-> causes production of stress chemicals -> brain chemistry
-> causes one to not eat because you want to "get it done" -> brain chemistry
-> causes a "harsh" neuron firing pattern that will lead to a lowering of seizure threshold -> past pattern of neuron firing
-> causes stress to the body, requiring more nutrients from food, leaving less for the brain -> brain chemistry
Doing this brainstorming is useful because if your mind is closed to the influence of these sort of things having a cumulative impact, you then close your mind to the potential of a risk management approach to really minimize your seizures.
