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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!

> have heard a lot about the Keto diet helping, especially in children. Have/did you have any luck or results with this diet type?

It didn't work well for me and made me extremly constipated because of the lack of fiber. If I was you I would just limit servings of carbs to one serving a day (1 slice bread, 1 cup noodle, 1/2 cup rice etc.) and make sure it is whole wheat and cut out sugars as much as you can, limiting fruit intake to two or three servings a week. Also go heavy on the veggies and the healthy lean protiens such as chicken and fish, though watch out for too much fish as too much is dangerous. Limit fish intake to two to three servings a week. Good examples are turkey bacon and eggs for breakfast, whole wheat rice and veggies for lunch with low sodium soy sauce and chicken or fish with beans and veggies for dinner and unflavored, full fat greek yogurt with honey and bananas for dessert once in a while. I mean mix it up a ton but this is what I do and it works for me, but that is the key word:me. Everyone is different.

Talk to your neuro about diet options for sure as this helps. Stay away from soft drinks, aspartame and caffeine also. A slice of sugar free gum won't kill you but diet coke can be bad for epilepsy.

I firmly believe, even though it's very hard sometimes, that a diagnosis shouldn't rule your life.

Agreed. I had a hard time not letting my diagnosis rule my life. It is hard being 21 and not drinking anymore or going concerts where there could be strobe lights or if I do, excusing myself if I feel sick, when I used to do that with my friends all the time. I used to be a wild child but it made me clean up my act, which is awesome. It is hard though so I understand for sure.

The best advice I can give you though is that everyone is different, how seizures affect your son may be different than how they affect me. Good luck though and keep your neuros card on hand. Also, get a medical alert bracelet such as this which is easy to put on, waterproof and everything. It will make you feel a lot better.

I take 150mg in the morning and 50mg at night along with 100mg of Zonisamide; I was originally on only 300mg of Z, but after a year of bad side effects with that I decided to give Lamictal a try.

I started off at 25mg in the morning, then 25mg morning and evening, then 50 morning/25 evening and so on until I was at 100/100. I realized (through some helpful comments here!) that the nighttime doses were probably the source of my tiredness; I asked my neuro if it'd be okay to move to 150mg morning/50mg night, and he said okay. (This was on top of 300mg Z; I titrated that down afterwards).

The side effects I noticed (in order) were:

• Increased logical skills (Z kinda dumbed me down; L would actually help me out some) Immediately
  
  
• Dry eyes, skin, general dehydration After reaching 100mg
  
  
• Difficulty sleeping (happens when you take an upper before bed) After reaching ~150mg daily
  
  
• Some minor side-vision hallucinations - just stuff like thinking you saw something in the corner of your eye, then turning and realizing it was just a figment. Honestly, I still have this sometimes, but it's easy to deal with (imo). ~2 weeks after reaching 200mg daily
  
  I've been on 200mg Lamictal since about mid-July. The sleep issues are getting better, the dry skin is still sort-of an issue, but I get this stuff on a subscription, 3 every 2 months, which is basically like drinking gatorade every day but much cheaper.
  
  I know the part about hallucinations sounds a little crazy, but not everyone gets them and when they do occur, they're extremely minor and I hear they do go away after a few months. Mine have seemed to be fading.
  
  Overall though, I'm under great control, and very happy - compared to other meds' side effects, lamictal is great.

Can you go often, but buy fewer things?

Our store is five minutes by car, and it's a nice walk for me. You might be out walking and have a seizure, so that's something to balance this with, but you could maybe walk to the store, and walk home. The important thing is, you could do it yourself. Check the trail system (fewer people around to check on you than sidewalks, but you won't wander into the roadway). Check into a Spot (https://smile.amazon.com/SPOT-Satellite-GPS-Messenger-Orange/dp/B00C8S8S4W/ref=sr_1_2?crid=3P9PQK3E3VELN&keywords=spot+emergency+beacon&qid=1557965640&s=gateway&sprefix=spot+emergen%2Caps%2C215&sr=8-2) so even if you are out and walking, you can get help if you feel a seizure and you're on a trail. You don't need to call 911, you don't need to get your phone out, you don't need to do anything but push a button. Conversely, you can send a different message, if you want, giving an, "I'm ok" message.

But maybe you could go to the store three or four times a week. I know going to the store isn't the most exciting thing, but hey, it's out of the house and you can do it yourself. Believe me, I know. Some weeks my biggest accomplishments on my own are going to the store and the drug store. But, it's also really good exercise.

I saw you ask someone else about waiting six months. I drove for 25 years, and I got diagnosed last December. Seizures started in October out of the blue. We're still playing with my dosages. Just upped my Trileptal this week (OMG, my stomach! I woke up yesterday morning, naturally while on a business trip, and had to dash to the toilet to sit there and be sick a bit. Then leave the meetings and go sit in the bathroom some more. How do you explain that one to colleagues. "Yeah, we just upped my anti seizure drugs and I'm having a side effect issue, so I'm currently shitting out my brains, I'll be back in a few minutes, sorry for the smell! I know, I hadn't told you I'm an epileptic. Well, this is a shitty way to find out, get it?"). Legally I can drive, but I couldn't deal with hurting my daughter or someone else. So I've put it on myself to be six months between seizures. My husband is dealing with it, but not super well. "How many days until you can drive again?" It's not been easy for our family. A huge change in our lifestyle. And like you, we live in a place that is NOT set up for life without a car. But I walk. I walk a lot (though not this last week, I hurt my hip a bit, and that pushed me over the edge and I cried). It's good for me, I like it, and I kind of hope I continue it after I can drive again. We'll see.

But I'm actually anxious about driving. I'm excited to get my independence, but I'm scared. I'm still having auras. And the side effects are weird, making my body feel curved (like my hands are on the computer, my elbows are to my right, and my body and head are seeing the computer). Can I really drive? Is this safe? And what if the seizures come back? What if, what if, what if.

I know it's frustrating. It will always be frustrating. I won't tell you to NOT be frustrated, because this is life with epilepsy. Last week I was so frustrated I had to call my best friend to give me a ride (I couldn't take another Lyft, just couldn't) and I broke down in ugly tears in his car (my husband was out of town, otherwise I would have parked myself in his building for six hours until he was ready to go home for the day). But, hope for the best, and look at the amazingness you have. And, when the frustration comes, know you have awesome people around you who you can lean on (in real life, and people in your pocket online) who totally get it and who support you.

But seriously, look into walking. :)

My 21yo son did this last June. I was there with him for the duration, and I think we checked out in 6 days. The food was excellent, and he could order food with no limitations. A nurse had to in the room before he could get up out of bed to go to the bathroom, and remain in the room until he was back in bed. They did not go into the bathroom with him, thank goodness.
He was unable to shower. He changed his button down shirt and pants daily. Next time he will bring those giant wet wipes like this: https://www.amazon.com/Surviveware-Biodegradable-Cleansing-Cleaning-Hypoallergenic/dp/B074DYPZYK to clean himself in bed. And some of that dry hair wash spray: https://www.allure.com/gallery/ten-dry-shampoos-under-20
The hardest parts for him were being tethered to the bed unless on a supervised bathroom break, and being dirty. He brought tons of entertainment, and I was there to advocate, entertain, fetch and carry, order his food, etc. I left him alone for about 1 hour a day, to give him a break from me, and to get a workout and shower in.

If you have a support person with you, be aware that the support person is not to eat the hospital food or even use the room's bathroom/shower. There was a very comfortable pull out chair that converted into a bed, and I brought my own linens and pillow. I was very comfortable.
Next up is intra-cranial EEG and potentially partial lobectomy.
Good luck to you!!! You'll do fine, and hopefully your seizures cooperate and they get all the data they need quickly!

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. ;)

The reason why you worry is that you don't have all the safety stuff in place yet. Start with swimming never swim alone until you get your seizures under control. Quick Showers are safer than baths and make sure the temperature of the water is turned down... And never bath alone in the home... just wait till someone else come home. We have had burns in the kitchen so always cook on the back burner or use the microwave.

Stair falls are the worst so we put a gate at the top of them to help negate that risk. Put wall to wall carpet around your home. The thicker carpet the better. We when as far as putting a camera system in the house.

These safety tips are just until you get good seizure control. 70% of epileptics find seizure-freedom with the right medication. So be patient and work with your neuro to find that medication. On the subject of meds taking them exactly 12 hours apart helps you to evaluate effectiveness so use a smartphone to remind yourself to take them.

If you have no warning then wearing head protection outside might help you feel safer. Helmets have come a long way and some are fashionable. Remember going out alone in the freezing cold winter with a buddy is smart. As your seizure control improves you will feel better about going out alone... Keep us posted! Take Care!

Perfect timing. I actually just had my dog signed off as a service animal two days ago. All I had to do was have my Neurologist sign off on the airline paperwork. I typically fly AA so I used this form.
https://www.aa.com/i18n/travelInformation/specialAssistance/serviceAnimals.jsp

Many animals (dogs especially) pick up on our seizures. My dog was not formally trained, but she barks and will not leave my side when I am having a seizure. Plus she also has a calming effect on me, that in itself can qualify her as a service animal. Stress = seizures for me.

Also I would recommend a service animal vest. I bough one on amazon http://amzn.com/B00SW49RWI . It's made here in the states and is very good quality.

Edited for typos.
Best of luck!

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!

I bought a camera off Amazon (brand is Wyze) for about $35. It's amazing! You can set it up with your mobile phone to view a live stream, and can play back prior recordings.

It is powered via USB, much like a mobile phone. There is a slot for a micro SD card. I recommend buying one with the camera.


Link: Wyze Cam 1080p HD Indoor Wireless... https://www.amazon.com/dp/B076H3SRXG?ref=ppx_pop_mob_ap_shar

I got this!

I love it. It fits perfectly, and also comes with extra links just in case.

Oh yeah, another commenter mentioned that if you have memory problems, making sure you take your meds reliably can be an issue, especially if you are traveling and out of your normal routine.

I've used the pill boxes, and they work well, but filling them weekly can become a pain in the ass. I've also had a situation where the day labels have worn off and I forget if the pill box starts on Sunday or Monday... stupid I know, but it's easy to slip up if you aren't thinking about it.

I bought a smart pill cap that syncs via Bluetooth with an app on your phone, but it was HORRIBLE.. the one thing you need out of such a device is for it to be reliable, and it just wasn't. The app would alert me even though I know I've taken my meds one day, and then not alert me when I needed to take them the next. Almost every day it would have a false open around 4:00 AM, so the morning alert would never go off. It was just bad.. it was called Pillsy, so if you stumble upon it, avoid it at all costs.

I ended up finding this, and it is a near perfect solution. The bottle looks small, but will actually hold a month's worth of my meds, and timer just works perfectly.

I forgot to mention one other thing - we wrote a letter and presented it to the class each year at school so the kids would know about our daughter's seizures. It was amazing to see the response from little kids - very supportive, and it helped them understand what was happening so they weren't afraid of the seizure. We also bought the book Becky the Brave which was read in class by the teacher.
I can post a copy of our letter if you're interested in seeing what we said in it.

https://smile.amazon.com/gp/product/B00HNWK508/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1

Here it is! Sorry it took me a while to find it :) I love it though!

> 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. :)

There’s a good book on it by dr Eric kossoff from John Hopkins. It’s pretty strict I’ve never been able to keep with it for more than a month or so, but the new edition opens it up a little bit to what they call the “modified Atkins diet”. It’s pretty similar, basically no carbs allowed, but it’s a little loser and less fat based. Definitely worth checking out...

https://www.amazon.com/gp/aw/d/1936303949/ref=dp_ob_neva_mobile

It seems like you got some really good advice about helping your brother. I just have to suggest to you a graphic autobiography. Epileptic by David B. reminds me so much of your situation. I put off reading it because, as a person with epilepsy, it was a little disturbing to me. It is about a boy growing up with an epileptic brother, and the stuff that goes on in his family as they try to help it. The illustrations are genius.

The one criticism I have is that I feel that the author never really understood his brother, or his brother's point of view, but that is also sort of the beauty of it.

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.

You might enjoy this graphic novel. Created by a guy in your shoes https://www.amazon.com/Epileptic-Pantheon-Graphic-Library-David/dp/0375714685

I tried a few different versions of the Modified Atkins Diet (70% fat). Some partially worked, some didn't change anything for me. There isn't always a success. This book has statistics and the different protocols (there is more than 1 type of modified Atkins for epilepsy) for modified Atkins as well as true ketogenic. https://www.amazon.com/Ketogenic-Modified-Atkins-Diets-Treatments/dp/1936303949/ref=dp_ob_title_bk

The type of keto for epilepsy isn't the type advertised on r/keto wiki.

​

This website is run by lead researchers in ketogenic diet field: https://www.ketonutrition.org/practical-guides-to-the-ketogenic-diet notably Dom D'Agostino.

Paleomedicina has something called the paleolithic ketogenic diet that can be used for epilepsy but the protocol is more strict (3:1 fat: protein ratio). It costs 30 Euros for the protocol.

I'm going to try paleomedicina's protocol if this new medicine I'm on doesn't work.

Good luck


Edit: Advice: Read and learn as much as possible if you truly want to try to fix epilepsy with nutrition.

I highly recommend this medical id bracelet. Check out the tips on what you might have engraved.