(Part 2) Top products from r/Epilepsy

First, I would like to ask if you have gotten over the "it's not fair, she's never going to be normal" part? That's not accusatory, it's a serious question because a big part of what helped me start to accept the diagnosis at age 9 was the fact that my parents seemed to accept it and treat me as if nothing had changed (other than the medication and doctors visits). I remember distinctly leaving the hospital after my first EEG and crying because I thought I had this horrible disease but my dad calmly explained to me that I just had a quirk in my brain and that everyone has a quirk with something. This calmed me down and though I didn't accept everything right away it certainly put me on the path to acceptance.

Now, you might already be beyond the accepting part in which case you can tell your daughter that 2/3 of all kids with epilepsy grow out of it by their teens and that even if she doesn't, it sounds like her epilepsy is well controlled and she will be able to live a relatively normal happy life.

I looked for some books online and found these: What If They Knew, Julia, Mungo, and the Earthquake, and Becky the Brave. Books helped me as a child too so even if you can't find any that you think she would like about epilepsy go ahead and get books on any subject for her.

I'm not sure what conversations you've already had with her but make sure that she knows that all her feelings are completely normal - it sucks, it's not fair, and seizures can be scary but that you love her and will always be there if she would like to talk about it. Even if you've already expressed that or you think she knows, it's still a good thing to hear and can be a comfort in itself. Take care and good luck!

Kepprage is no fun at all, but the symptoms will decrease as it leaves your system. Keppra -> Lyrica for me, because I almost got into a fistfight with a 70 year old man because he was shoveling snow off of his driveway too loudly, and I just snapped. Not happy AT ALL that I'm stuck on Lyrica, but incredibly relieved that I'm off of Keppra.

I went from 600mg of Lamictal to 450mg of Lamictal XR, and it helped immensely with the dizziness and word fishing side-effects. See what your neuro thinks about extended release meds. In my case, a slightly lower dosage of XR was more effective than upping my dosage of the regular stuff. Same thing happened with Tegretol vs. Tegretol XR. I went from 1400mg daily to 1200mg daily.

As for the forgetting tasks, I suggest note taking. I got a pocket-sized notebook and began writing everything down and crossing things off the list after I had completed the task. It was immensely helpful, and after a few months I noticed that I no longer had to check my notebook. Just the act of writing things down improved my short-term memory quite a bit.

Good luck with the meds, friend. Don't go punching stationary objects in anger. The stationary objects always win. ;)

Seconding the pill box! I've been on meds for over ten years but since I was about 20 I've been on so many that I need a box to sort them out.
Mine is like this and it's really helpful because you can detach a couple days or just one to take in a small purse if you want to :)


I rarely forget to take them but it's a super ingrained habit for me. I think an app would be great for someone who is new to it though!

Yeah me owning the property makes a huge difference. I don't, so no crazy construction projects. I could take the door down but I have an older daughter and she has friends over. Trust me there needs to be a door. Thought about the accordion door and it might have to come to that. But the real problem is the door closes when I don't want it too... So were going to try a magnetic door stop seen here first and if that doesn't work a plain old fashioned door stop seen here. Thanks for the input. This safety stuff you got to get ahead of it. Ok off to home depot... Thanks again!

> Foundling

This came up when I googled it and I was like ....

I'm not near giving up yet but I see it's going to be even more difficult than couples already say it is. Nothing is easy with epilepsy! Ah, well. Thanks for the resource. I think I found it. :)

Everyone is different. I did many things. The Modified Atkins (basically what people mislabel as ketogenic) and that helped a lot because I was eating a max of 25 carbs a day. Also quit all stimulants (coffee, fruit, added sugar, caffeine). Carbs cause glucose spikes. Keto diets keep your glucose levels consistently low without fluctuation (as if you were fasting). This does not cause you to go near a hypoglycemic state. Book name & resources below. If you decide to do it don't half-ass it. Read the entire book. You have to stay strict for at least 8 weeks in the beginning or don't waste your time reading the book and resources below.


I started Onfi today and if that doesn't work I am going to do the PKD (Paleolithic Ketogenic Diet) from the Paleo Medicina research group out of Hungry as a last resort. It's Ketogenic with only animal meat and fat. Extreme. Supposed to be better than modified atkins.


https://www.ketonutrition.org/practical-guides-to-the-ketogenic-diet This website is the product of Dom D'Agostino. He is one of the leaders in the research field of ketogenic diets. Lots of good information on the website but the book below has everything you need to know condensed.

Ketogenic Diets: Treatments for Epilepsy and other Disorders By: Eric Kossoff, John Freeman, Zahava Turner, & James Rubenstein

From what I understand if you have more then one gran mal that's not triggered by a brain tumor or drugs they label it epilepsy.

Just make sure you get plenty of sleep, stay away from drugs (especially stimulants!), eat healthy, take care of your mental health and take you medication everyday. (Grab yourself a pill keychain)

First off, I take the same medicine (zonisomide) and get the same feelings you do. Look into seeing a psychologist in addition to your neurologist. They can do wonders in helping guide you through this.

Second, I highly recommend reading this book: https://www.amazon.com/Feeling-Good-New-Mood-Therapy/dp/0380810336. You can find it online if you look. It's not a 'self-help' book. Rather, it's a book by a psychologist discussing 'cognitive therapy' which has been shown to be as effective as antidepressants. The idea is to understand that your negative, distorted thoughts are causing you to feel bad. Most thoughts that cause people to be depressed are faulty and once you realize that, you'll realize the irrationality behind your depression.

For example, you are magnifying the negative things which you admit are normal, such as feeling lost in what you want to do for a career and disqualifying the positive things in your life, such as that you are in school, and are seizure free. These thoughts take away from true non-distorted feelings of sadness a human should have (you have a real illness, epilepsy, that you need to deal with-- but there are ways to manage it and you it sounds like you are responsibly with medicine). You're also falling into the classic distorted thought of 'I should be doing X right now...'. When the reality of your own behavior falls short of your own standards, your 'I should' thought creates self-loathing, shame, and guilt. You need to change your expectations because it is all-to-human that your behavior will fall short of your own standards from time to time throughout life. Anyway, the book is helpful in realizing these things. Read the reviews on Amazon. It could help you. Good luck.

this might help you feel better

Sounds like [Computer Eye Straint] (https://www.cnet.com/how-to/five-surefire-ways-to-reduce-computer-eyestrain/)

Get yourself a filter https://www.amazon.com/3M-Privacy-Desktop-Monitor-PF19-0/dp/B00028ONIA

What you need to know if epilepsy has touched your life. Very practical guide by some top epileptologists https://www.amazon.com/What-need-know-epilepsy-touched/dp/1475105312

I like the nuun tablets- the ones suggested, when we do use them (not all the time). Mostly for convenience (little container of them to drop down in my water bottle, decent flavors/variety). I have to order them because our local CVS and Walgreens do not carry them...our Whole Foods does sometimes but they are really pricy over there.

Also I use Emergen-C, they have one that is an electrolyte "boost" variety or whatever. These are at most any pharmacy and walmart, prefer the pomegranate or raspberry to the tangerine flavors.

edit: also random that is not a drink- switching to the "lite salt" b/c it has potassium in it (it's a blend of salt and potassium chloride)

do it

Navigating Life with Epilepsy (Neurology Now Books) https://www.amazon.com/dp/0199358958/ref=cm_sw_r_cp_apa_3ZCcAbJJYGXDV

If you're ever having issues falling asleep, I highly recommend Sleepytime Tea. I started taking Valporic Acid 2 years ago and it was causing a lot of issues with my sleeping schedule as I'd have issues falling asleep, waking up in the middle of the night and not being able to fall back asleep and/or being tired all day even after a solid 10 hours of sleep.

Stop it with the hydrogen peroxide. It'll disinfect but slow the healing process. Actually you may want to gargle with saltwater. That apparently expedites the healing process. Also get yourself some of this at the drugstore:

Orajel Antiseptic Mouth Sore Rinse, 16 Fluid Oz https://www.amazon.com/dp/B001GBH0HI/ref=cm_sw_r_cp_apa_XlOEybQ54RRF7

For the vacuum sealer itself, a Foodsaver. Once you've used up the bags that come with the starter kit, the you can get a roll of bag that you can cut to size for pretty cheap.

It's a bit of an initial investment, but once you're making your own food, it pays for itself in the reduction of food waste.