What would you want more info about?

[Silat]

I'm just curious what people would want to know in this situation -

Let's say you're just leaving your first Neurologist appointment and you have no idea what's really going on with your health and no previous knowledge about epilepsy, it's causes, treatments, etc. and on the way out they gave you a book or resource of some kind which had a large amount of information on Epilepsy...

What would be the first things you'd want to read about?

For example, I'd look to the part explaining how the parts of the brain interact first, then I'd go to the section about dealing with the side issues that often come with having seizures - like anxiety, depression, etc. - then I'd want to read a tips/tricks section about the daily life. I'd also want to read a section about being a parent, there seems to be a good amount of info about raising a child who has epilepsy, but there's far less info out there about raising a healthy child when you, as the parent, have epilepsy.

In that scenario, what would you want to know more about?

 

[Dignan]

Maybe not quite what you mean, but if I could do it again, I'd demand a full slate of detailed labwork for hormones, thyroid, pituitary, and adrenal function. Provided I just had my first seizure and that I was otherwise healthy, I'd want to establish a baseline of where I was at with regard to these numbers so if I began to have AED related side effects down the road, and anything from these areas were in question, we could refer back to where I was when I was feeling normal.

Along these lines, I'd also get a bone density test right off the bat and maybe even some neurocognitive tests to establish baselines for memory and other thinking skills.

 

[Nakamova]

I'd want to know about ALL the potential triggers, and how to potentially identify and avoid them. As a subset (hormones) I'd want to learn more about catamenial epilepsy and its treatment.

I'd want to know all about simple partials.

I'd want to know more about dietary approaches.

I'd want to know about resources like CWE.

I'd want to know the limitations of current information about epilepsy:
-- EEGs and their limitations, esp. with regard to deep brain and frontal lobe seizures.
-- Treatments and their limitations, particularly the unpredictability of individual responses to medication and individual experiences of side effects.
-- Neurologists and their limitations: The importance of having a collaborative relationship towards your care and treatment. Mutual respect. The role of both broad and specialized experience in diagnosing. Prompt scheduling of any tests and discussion of results. Easy access if there are questions and concerns. The importance of seeking out second or third opinions if the neurologist falls short or is a bad match.

 

[petero]

good question
initially I'd prefer info on what a seizure IS
I remember at some point some doctor(?) telling me that it's sort of like a "jacob's ladder" game of chemicals that alters a series of chemical reactions through the brain, that this "ladder" can be in different parts of the brain, that it can be deep or shallow, and that anything can create that jacob's ladder, and anything can set it off, though these things can generally be narrowed down... and they're often referred to as "triggers" yadda...

it would be informative to have areas of the brain narrowed down and diagrammed (sight, smell, touch, balance, emotions, rationality, logical, ...) sort of a Plutchik's Wheel (something I just found out about) of emotions, and where these emotions are centered in the brain? I think this might help to identify mechanisms of partial seizures, for understanding how seizures can affect emotions, and making general determinations of where seizures may be taking place? (of course for non-tonic-clonics when there is still a level of consciousness).
And why do tonic-clonics knock you out? I'm still not really sure. Is it because the seizure goes deeper into the brain? Regardless of what areas they affect? I've assumed that the aura indicates activity in that emotional/rational area of the brain, and that from there the seizure goes deeper until it becomes a T-C, and so coming out of the seizure, and easing toward consciousness, that same emotional/rational part of the brain flutters back to some sort of stability and resolution.
and that AEDs attempt to pin the chemistry in its resolved state...

double thumbs up for the answers so far

and most of all, if this was a post-ictal visit after my second seizure and someone hands me a thick book of things to do, it would be less than dissuasive for use as anything other than as a tool to smack my mom over the head with for dragging me to the ER while I was postictal instead of leaving me in bed.

I would definitely be an advocate to hearing about online resources that aren't strictly technical resources online (like NIMH tends to be) or 1 paragraph: "epilepsy is when someone has seizures. a seizure is abnormal activity in the brain. the brain is what was not used to write this article about epilepsy. the end." type of pabulum.

If there was a way to keep in touch with my neurologist online that'd be great. And especially his cute receptionist that seemed like she was giving me a certain, um, hand signal (?) last time I saw her. (overactive imagination/losing my mind)...

psychological resources would be great too - because when irrational there isn't a way to consider things rationally :|

I think information to anyone dealing with people with epilepsy is probably as important if not more important than informing the person with epilepsy. When you're on a roller coaster there's not much you can do until it ends. The worst thing that could probably happen is for someone to try to lasso you to "save" you from the roller coaster as it's speeding past them.

 

[Sparkles]

I'd want to know about the role of alternative treatments such as limiting processed foods, increasing exercise where possible, supplements such as magnesium and B vitamins, consistent sleep and eating schedules, etc. I guess these are more complimentary treatments rather than alternative. My primary care doctor has helped me with these things and I've found them very helpful and I want more of this.

I'd need very basic information. I had no idea there were even different kinds of seizures until I came on this site. I mean, part of that was my being in denial, but I thought a seizure meant tonic clonic so I stopped listening to the neuros when they said seizure because I didn't believe them. I would want a one page hand out in the most basic terms possible describing the different types of seizures because I see now how I am just classic complex partial seizures and could have saved myself a lot of grief and time had I not shoved my head in the sand and fallen on stereotypes and fears I'd had.

Definitely support group information, both those in the local area if there are any and online like this one. It took reading information and stories here from people going through similar things as I to stop being in the denial and woe is me phase and get my act together to advocate a bit for myself and start being more consistent with my meds, ask better questions of my neuro, and just have some hope. It's meant so much, I can't say. I don't post a lot here but I read several times a week and learn a lot and get a ton of inspiration. If I could have had this site years ago I think, again, it might have saved me some grief, though I was pretty entrenched in the whole, that's not me thing I had going on. I still have a lot to learn. I'm the kind of person who gets overwhelmed and shuts down, but I'm working on it little by little. I think if I had too much information at once I'd not read it.

Information on medic alert type bracelets. I know not everyone likes them and the decision is very personal, but for me, it was important to get one and I found out about it, yup, here. And I'm so glad I did. I'm just very surprised the neuro clinic never even mentioned it considering how many times I lost consciousness and was brought into the ER with broken and fractured bones and unable to speak for lengthy periods of time. The number of tox screens I paid for annoys the heck out of me. Now they recognize me but sometimes still run the screen. It's embarrassing. So I have like 10 negative tox screen. I think I'd like to have been prepared for that somehow. At least I don't remember much about them.

Oh. And post ictal, I still need more information on that. I want to understand the physiology of it and common symptoms and I want to be able to explain it to family members. Maybe even a one page handout for those family members who are ever so "helpful" you know. We love them so much and they love us so very much but boundaries, oh my goodness, how they can help without becoming, um, too helpful.

Just somehow, some way, information to know that I'm not crazy. Most of the time anyway, even when I feel like my world is spinning out of control, and I can't remember my coworker's name, and my frozen shoulder from my September seizure fall is throbbing, and my boss said she is "relieved to know I have a seizure disorder because it explains a lot about my productivity" and my workplace is piling on the work and removing resources in the wake of my FMLA leave because they can't fire the woman who returned with epilepsy and they told me how they need to "protect" the workplace and maybe I could sign something about not holding them liable if I fall again, and the security person walks by my office to see how I'm doing now and then, and my parents fly down to my house if I don't text them back for 20 minutes even though I'm 44 years old, and I would quit but I'm a single mom with the only health insurance in the house, and well, I don't even have it all that bad, but I'd want to know that things can get rough but that my doctor cares about me as more than Patient X with the complex seizures that seem to be responding well to Topamax.

Is there a brochure for that? Seriously, though, I guess the neuros don't have time for that. One day at a time,

 

[Silat]

These are excellent answers! Thanks everyone

 

[SlimBlue]

Hi Silat, I'm not trying to be flippant but I think the only extra bit of info I ever needed was what caused it all in the first place.

I realise that's not the point of this thread- and most of us never find out- but it still really bugs me nearly 20 years later :/

 

[BIGMAN131307]

All of the above answers sound good. But I would go a different route. I would want to know what my Neurologist, Neurologist nurse would do if they were in my exact situation. Would they try AEDs? Would they get surgery? Would they try eliminating processed foods? I wouldn't take anything less then a straight answer.

I did ask my old PCP what he would do in my situation. He told me he would stick with the AEDs. At the time I was in total agreement with him. Now my situation has changed, my memory isn't as good.