(Part 3) Top products from r/Epilepsy

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. :)

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!

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.

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)

Orrin Devinsky has a couple good books if you're looking for more information. This is one that has helped me a lot.

https://www.amazon.com/Epilepsy-Patient-Family-Guide-Third-ebook/dp/B004HO59GU/ref=sr_1_4?s=books&ie=UTF8&qid=1493770526&sr=1-4&keywords=devinsky

https://www.amazon.com/Country-Life-Coenzyme-Advanced-Capsules/dp/B00CAUU1RU/ref=mp_s_a_1_2_sspa?keywords=country+life+coenzyme+b-complex+caps&qid=1566664333&s=gateway&sprefix=country+life+&sr=8-2-spons&psc=1&smid=A3GLCMFE5KXLDA&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEyN1FOQjE4SjhJMDImZW5jcnlwdGVkSWQ9QTAxNTQ1NjJMTkkwUFpMUklZVEYmZW5jcnlwdGVkQWRJZD1BMDE1NjExMThLMENaTENNWVowTyZ3aWRnZXROYW1lPXNwX3Bob25lX3NlYXJjaF9hdGYmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl

I use a pill organizer - like this. Combined with alerts on my phone, it's much less complicated. No need to guess if you've taken the pills - if they are in the compartment, you haven't. If they aren't, you have.

All you have to do is remember to take them (that's where the alarm comes in), and what day it is. Oh, and to refill it every week.

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]

For more info read here