An Introduction

[MaryBeth18]

Side Effects and Postical Stage - HELP?

Hey Everyone
My name is Beth, I'm 18.
My family has a history of health issues. We are used to living with things on a daily basis. I was diagnosed with Rheumatoid Arthritis when I was 12. That was about the biggest thing I had personally dealt with.
On August 1st of last year, I had a grand mal seizure as I was falling asleep. It terrified both me, and my parents. The only seizures I knew anything about were diabetic seizures from low blood sugar. We would have gone to the ER, But everything checked out ok, so we went to my pediatrician the next morning. He told us that everyone has a seizure threshold, and I had strep throat at the time and was on antibiotics. I hadn't been sleeping well, and all of those things would've lowered my seizure threshold. He said it wasn't necessarily normal, but he also knew that if anything weird was going to happen, it was going to happen to me, so he wasn't going to freak out yet. He did a neural exam, and I checked out and seemed fine. He said one random seizure wasn't unheard of, and said he wasn't alarmed.
I had such a hard time recovering though. My head hurt for two days straight. I was exhausted and dizzy and didn't feel like doing anything. And over the next few days I couldn't remember anything. I couldn't focus, or carry on a simple conversation. I ended up having lots of absence seizures (I don't even know how many) and and another tonic clonic that week so we went back to the pediatrician, and he sent us to the neurologist. The neruo did an EEG, and then a sleep deprived EEG. By this time, I was having myoclonic jerks constantly. I had almost forgotten what it was like to be able to control my body.
Before the seizures, I had a full time job and was working 40 hours a week, and I am not able to do that anymore. I've been diagnosed with Juvenile Myoclonic Epilepsy, and my drivers license has been taken away, which has been so hard for me, because with that, went my independence. I've tried all kinds of AED's you can imagine. I've been hospitalized due to the affects of them once. Outside of epilepsy, I am completely healthy. I am not satisfied with my neurologist at all - because I feel like we are just throwing drugs at it and hoping they work.... and they aren't. Right now, I'm still having on average 1-2 Tonic Clonic and 5-6 Absence Seizures (If not more of those. They happen a lot). But enough complaining!! I'm just wondering if there is anything y'all do to counter act the side affects of your AED's? I'm just trying to live a normal life, work, and go to school Lamictal made me dizzy and made my hair fall out. Keppra makes me SOOO sleepy and loopy and grouchy and changes my personality, and topamax makes my feet and hands fall asleep. It keeps me from sleeping enough, because its painful and wakes me up. Anything y'all know of I can do to lessen that?
Thank y'all so much in advance!!

Edit: Also, is there anything y'all do to lessen the postical phase? Sometimes my friends and boyfriend try to calm me down coming out of a seizure, but they get scared if I don't remember who they are. They've tried showing my pictures on their phones, but it seems to freak me out a little bit. I've never tried to hurt any of them and they are wonderful helping me through these things and thats definitely something we all want to avoid! Any tips for remembering people or helping me understand whats happening?

 

[Endless]

Welcome, Beth!

I'm so sorry about your seizures. Even sorrier about the side effects of your meds right now. Sometimes it takes a long time to fish around with different meds until you find one that works for you because everybody is so different in how their seizures respond and what side effects they get. For nerve pain like pins and needles I've found that Gabapentin helps a lot. It also makes me sleepy so it's great for nighttime. Maybe ask your neurologist about Gabapentin? How are you doing mood-wise, and with your ability to think on Topamax?

 

[N Sperlo]

Hi Beth.

That is one hell of an experience. I keep meeting new people and the stories I hear make my life sound so much easier. It sounds like your doctors are pretty good, but you've got a nasty recovery process.

I think your pediatrician did the right thing and I think your neurologist has been doing what he can. Often times the process of finding the right medication is a trial and error system. Yes, your doctor is throwing different medicines at you, but we all react differently and that can even change over time. I for instance had to add a second medication to gain more control.

I have been able to deal with the effects of Keppra and Vimpat. With the experiences of the CWE family, each individual may be able to help you deal with the medicines they have been on. Let us know what medications you are dealing with (you mentioned a lot of them up there and I can't quite figure out what you're on. ) and maybe someone can help you more specifically.

After a seizure, we all feel different. I haven't had any seizures in quite some time. I would wake up just a little confused. The worst it got was not knowing what day or times it was and I thought I had to be somewhere. It sounds like you have some people that can help you out in the process, but I think if you are comfortable enough, they can just be there until you recover. Maybe that will work, maybe it wont. :/

Welcome.

 

[MaryBeth18]

Haha! I'm sorry, I'm just realizing I wasn't very clear on a lot of things! I'm currently taking 1400 mg of Keppra a day, and 100 mg of Tompamax a day. The Keppra drives me crazy. I feel like a zombie. Almost everything is a somewhat out of body experience with it. Haha!! I'm very dizzy, groggy, SOO SLEEPY. Being so sleepy makes me grouchy and act differently than my normal self. Then the topamax... its not bad.. It doesn't seem to affect my thinking skills (or what I have left after the keppra!) at all. It just makes me feet tingle to the point of being painful, and it wakes me up at night because it hurts so badly.

As far as my postical phase - I am always very very confused and tired. My friends who were with me try to tell me what happened and explain to me that I had a seizure but tell me I'm ok and everything is fine. And it usually works, and i recover. The exception is when I don't remember them. Sometimes they will talk to me and I will look at them like I have no idea who they are and act very scared. Or I will yell at them and ask them what they did to me and why they are there and why they hurt me and who they are. I've even done that to my boyfriend, who does a GREAT job sitting with me during seizures, making sure I don't hurt myself. He's wonderful and has learned exactly what to do, and what I need. I'm scared I'm gonna be confused and not know who he is and I'll try to hurt him. He's tried showing me pictures of us together, and telling me his name and that he won't hurt me... but the only thing that ever works is just leaving me alone until I start acting normal again. Does anything like that happen to anyone else?
Spatial/Absence seizures usually happen mid conversation, and I wouldn't know that they happen unless I drop something, hurt myself or if my friends ask me to finish my sentence and I don't even remember that I was talking. Sometimes if I'm eating or talking with friends I'm come to and they'll be laughing and I will have no idea why. Those are so normal at this point its almost just a joke between us.

 

[Belinda5000]

Hello Beth and welcome to the board,
I know it can take 2-3 weeks get use side effects at least it did in my case ant way.
Actually there is nothing u can do to lesen post ictal phase.I've cussed ppl just done things I wouldn't normally do.
I take Topamax and it's one of the few drugs that actually works for me.

 

[Nakamova]

Hi Beth, welcome to CWE!

Neurologists tend to be limited to a few blunt instruments (medications) for epilepsy treatment. there's no way to know how any individual will react to a med, so yeah, there's a lot of trial-and-error. The medication merry-go-round can be exhausting and stressful all by itself. There are a lot of anti-seizure meds out there, so it can be worth it to keep looking as long as you have the energy to do so. It's tricky because some of the ones that can help with tonic-clonics -- like Lamictal -- can make myoclonics worse, Gabapentin is also contraindicated, since it can also make JME seizures worse. Valproate is considered the first-line med for treating JME. It's not ideal if you were planning on getting pregnant soon, but if that's not on your radar now then you might ask the neuro about giving it a try.

If you need to stay on the Keppra, ask your doc about taking a B6 vitamin supplement -- it's known to help with the mood-related side effects. Magnesium taurate can sometimes help with jerks and spasms -- worth a shot if it can provide a little relief. And the Modified Atkins Diet has helped reduce seizures (particularly absence seizures), so that might be another approach, if it doesn't conflict with treatment for your RA.

Best,
Nakamova