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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!

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. ;)

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.

> 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)

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

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

To speed up healing:

Use salt toothpaste instead of your regular kind.

Only drink water.

Avoid acidic foods like citrus.

Rinse with Colgate Peroxyl, Orajel, or a mixture of 50% water and 50% hydrogen peroxide throughout the day, particularly after eating.

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.

Rinse with peroxyl/orajel (or just 50/50 water and hydrogen peroxide) four times a day; after every meal and before bed. Brush with salt toothpaste. This will cut healing time down quite a bit.

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.

1. Seroquel: Technically this is not an AED, but before we knew I had epilepsy, I needed anti-psychotics due to audible hallucinations. It turned me into a zombie that could barely function cognitively. The voices stopped with my next one. The first two months were terrible then and for months after.
   
2. Keppra: It worked to stop seizures but I absolutely hated it. I gained weight, it made my hair fall out pretty much overnight, and made me depressed (also influenced by the hair loss. I wish doctors would listen to us about our feelings... Anyway, the first two months were also terrible, mostly due to the fact that at this point, I was upset about everything. Once I was on this, my capabilities to do math or follow directions (GPS needed for everything now), or speak well went out the door, so we took a chance with...
   
3. Lamictal: OK. I have a love/hate relationship with lamotrigine. In my early days, I still kind of felt the way I did on Keppra. The first two months were the same as it. Mental fog, screwy speech, and a little stutter when I tried. I have been on this for six years now with no seizures except for one attempt to get off meds completely. I think after about a year I slowly got used to it and adapted. I was able to go on basically the lowest dose you can get ( 2.5 - 15.0 mcg/mL in your blood is the normal range. I was at 2.8. I stayed at this low dose up until a few months ago when I started hormone therapy, but that's a different story (I will note that estrogen/estradiol cancels out many seizures medications; be careful ladies).
   
   ​
   
   >How did you deal with the initial drug side effects?
   
   Cannabis, talk therapy, and my dog. Couldn't really do anything to address S/E except for trying a new drug.
   
   ​
   
   >What strategies did you use to communicate to others that you are the same person
   
   I had to pretty much sit people down and explain. Frankly, I think my poor speech during these conversations explained it pretty well on its own. For my parents/family, I gave them a book, "The Body Keeps the Score." It was very hard to explain, but again the physical manifestations did most of it for me. I also explained to them that to me, the world was entirely different than the first 25 years of them knowing me. I explained it can be like I am bipolar at times.
   
   ​
   
   >At a future point, did you determine yourself that the drug no longer worked and it was time to switch? Did someone else have to "convince you" that a change in drug regimen is needed?
   
   I am lucky in that it only took two tries to get a drug I liked that stopped seizures and had tolerable S/E. But actually, I had to be the one to convince my medical team; it took a ton of moaning and arguing. Most doctors stop trying, IMO, once the main issue (seizures) is solved. I never kept a diary.

Posted at the end is the data on the life-threating serious rash that can occur with this AED. It can be serious and if she's hypersensitive she might need to try a different medication.

It stands to reason the Lamictal and the itchiness are related. I have heard that some people are allergic to some of the ingredients in the generic medication but not in the brand name or visa versa.

We found using a chorine filter on the shower was helpful. Look Here You can buy at Lowes / Home Depot today! I would add that Yolo uses this Calming Cream religiously after her shower. Itchy skin can drive a person crazy and I hope you get to the bottom of it. If her doctors aren't listening make them or find someone who does...


Warning

Oral route (Tablet; Tablet, Chewable; Tablet, Disintegrating; Tablet, Extended Release)

Cases of life-threatening serious rashes, including Stevens-Johnson syndrome and toxic epidermal necrolysis, or rash-related death have been caused by lamotrigine. The rate of serious rash is greater in pediatric patients than in adults. Additional factors that may increase the risk of rash include: (1) coadministration with valproate; (2) exceeding recommended initial dose of lamotrigine, or (3) exceeding recommended dose escalation for lamotrigine. Benign rashes are also caused by lamotrigine; however, it is not possible to predict which rashes will prove to be serious or life-threatening. Lamotrigine should be discontinued at the first sign of rash unless the rash is clearly not drug-related.

Dermatologic
In adult patients (n=3348), serious rash associated with hospitalization and discontinuation was reported in 0.3% of patients in premarketing epilepsy trials. In bipolar trials, serious rash occurred in 0.08% of patients receiving this drug as initial monotherapy and 0.13% of patients receiving this drug as adjunctive therapy. In worldwide postmarketing experience, rash-related death has been reported, but the numbers are too few to permit a precise estimate of the rate.

In a prospectively followed cohort of pediatric patients 2 to 17 years old, the incidence of serious rash was approximately 0.3% to 0.8%. In a prospectively followed cohort of patients 2 to 16 years old (n=1983), 1 rash-related death occurred in a patient with epilepsy taking this drug as adjunctive therapy.

Evidence has shown the inclusion of valproate in a multidrug regimen increases the risk of serious, potentially life-threatening rash in both adult and pediatric patients. In pediatric patients who used valproate concomitantly for epilepsy, 1.2% (6 of 482) experienced a serious rash (placebo=0.6%). In adults, 1% of patients receiving this drug in combination with valproate (n=584) experienced a rash (placebo=0.16%).[Ref]

Very common (10% or more): Rash (14%)

Common (1% to 10%): Contact dermatitis, dry skin, sweating, eczema, pruritus

Uncommon (0.1% to 1%): Acne, alopecia, hirsutism, maculopapular rash, skin discoloration, urticaria, ecchymosis, leukopenia

Rare (less than 0.1%): Angioedema, erythema, exfoliative dermatitis, fungal dermatitis, herpes zoster, leukoderma, multiforme erythema, petechial rash, pustular rash, Stevens-Johnson syndrome, vesiculobullous rash, anemia, eosinophilia, fibrin decrease, fibrinogen decrease, iron deficiency anemia, leukocytosis, lymphocytosis, macrocytic anemia, thrombocytopenia[Ref]

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