Hello!

[Evamarie91]

Hello, everyone. My name is Eva, and I found this forum while I was looking up details on epilepsy meds. I've had epilepsy since I was a wee little lass. As a child I was on Depakote and eventually I was weaned off and declared cured. Unfortunately by the time I was 13 we realized I was not cured, but I was never put back on meds. Now I am 22 and I'm starting the quest for meds again because I want to drive. I've been redxed with partial generalized epilepsy and just started Keppra. We're taking the doses up very slowly since I'm so freaked out by these drugs, but I'm hopeful they will provide some amelioration of the persistent absence seizures. So that's me! Hi!

 

[marika853]

Welcome fellow Floridian!
You will find a lot of info here. Many people are helpful and insightful about all different forms of this illness. I'm on 1000 mg. of Keppra daily since 2008. Haven't had a seizure since then. It has worked well for me. Others have had difficulties. It's all up to YOUR body. Good luck.
M

 

[Evamarie91]

Thanks! From what it looks like Keppra seems to cause a whole host of vitamin deficiencies. I am lucky to work for a chiropractor who can work with my neurologist to hopefully come up with a way to balance the vitamins and hopefully lessen some of the adverse effects. It's worth a try at least.

 

[N Sperlo]

Hey Eva,

Welcome. I'm on 2000mg of Keppra and 150mg of Vimpat. I was on 1000mg of Keppra and stopped taking my meds for a few years before having a T/C seizure for the first time. I then was put back on Keppra and later put on Vimpat when the Keppra wasn't doing well enough.

Keppra can be a tough drug to deal with, but I do well on it. You'll hear the words "drowsiness" and "kepprage" thrown around a lot when it comes to Keppra and these are the main things I'd suggest keep an eye on. There are A LOT of people here who use Keppra and many haven't been as lucky as myself.

Welcome and good luck!

 

[Cint]

Keppra is also well known to cause Kepprage-- intense rage/anger/depression. Finding the right vitamins can help. But I'm not sure the neurologist is going to work with you on that. Neurologists seem to rather prescribe more AEDs.

I've been taking 3000 mgs. of Keppra a day for seizures along with 200 mgs. of Zoloft for depression for 11 years now. But I have retractable E and have tried many other meds, to no avail. So hopefully, Keppra will work for you without all the miserable side effects.

 

[qtowngirl]

welcome eva for those with seizures/epilepsy and are family who go through it this is the best place to be.
myself i refused going on keppra b/c i'd just heard too many negatives, mainly the rage issue and moods changing one minute to the next. i also didn't like how high they generally make the doseage. however... like anything what happens to one person doesn't necessarily happen to the next, and there are a number of people here who have had success with it. from what i've read it's unlikely to avoid/not have side effects with k, but can be worth it if it reduces your seizures.
all of us with e are med guinea pigs at one time or another so if you can, just see it as part of the journey, it is a tougher part no doubt but can also prove very worth it!
best of luck it helps your seizures, keep us posted

and ps- i love your name, very beautiful. before i knew i wouldn't be having kids (too deterred with learning what was in my brain as well as the particular med that isn't a good one to be on re: pregnancy)....... we had already chosen names, and my daughter was going to be eva b/c it is so strikingly unique. hugs.

 

[Evamarie91]

You are all so nice! I am really lucky when it comes to the neurologist issue. My neuro basically said I had two options for meds. He wanted me to start on Lamictal because it has fewer mood altering side effects. The night of my fourth dose I woke up with extreme nausea and felt hot. It scared me so badly that I called back the next morning basically freaking out. He asked me how much I had taken and I said just the one 25 mg pill (it was the extended release). He was surprised but told me to stop taking it and wrote me a script for the Keppra. I think he was originally going to start me out on 500mg per day, but after taking my first dose I ended up with a rash on my hip that freaked me out, so I called my neuro freaking out and he told me to stop taking it. It ended up being some sort of weird bug bite, but it scared me and after many apologies to my poor neuro he said it wasn't a big deal and said I could try the Keppra again but only once per day for a week so I would know I would be fine. I guess that means that on Tuesday I will call him and get my dose doubled to twice a day. So far I am fine, but I am sure that is because I barely have any of the stuff on my system. From what I have read it seems like people are getting started on 1000 or 750 mg per day and that seems like too much. To be honest, 500 even seems like a large amount to me.

 

[Belinda5000]

Evamarie;
welcome to the board and epilepsy can be tricky when it comes to to the meds.
They can stop working for no reason.I've had epilepsy 50 yrs and been on my share of drugs.


Belinda

 

[CQ:)]

HI Eva,

Welcome to the forum.
I'm currently on Keppra (have been since 2008 ), it works well for me & I am 1 of the lucky ones who has no issues with Keppra rage.
I have also tried Tegretol, Lamictal, Topomax & Neurontin.

Good luck with the Keppra & hopefully you won't have to many side effects.

 

[valeriedl]

One bad things about meds is that you have to figure out what works for you. Just because certain pills and dosages work for someone doesn't mean that it's going to work for the next.

I think if you can name the pill I've probably been on it. Several different combos and dosages. I had to stop taking some of them because they didn't work or I had bad side effects from them. It took a while to figure out something that cut back my seizures. I'm still having them but they've decreased greatly and aren't as bad.

I am on Keppra and have serious keprage from it. I'm also on Depakote, Tegretol and Lamictal. The only other side effect is being tired a good bit. I'm not sure which med/meds cause that but it's not very bad.

Hope you find something that works for you and I hope you find it fast!

Good luck and nice to meet you :hello:

 

[Janus]

Hi, Welcome! I am on 1500 mgs of keppra and it is working. I do not have rage but other effects so i hope to try something else. The last time i tried to change meds i started having big Tonic Clonics and am back on just keppra. Despite side effects it is better for me to stay safe. Hope to hear back from you about how its going.

 

[giveasmile]

Hi, welcome!

I'm also freaked out by the medications, but still trying. I desperately want to drive again and need to be settled in on something and get a better EEG before I can.

Lots of people seem to do well on Keppra. I hope you do too.

 

[Evamarie91]

Hi Smiley! I don't know your real name . I am really doing this just to see if I can be helpful to my family and friends, but every single one of them has told me that they don't feel like I am a burden and they don't want me to hurt myself with these drugs just to see if I can drive. I might stop taking Keppra today because after my last dose I have been inceasantly itchy. My arms and my face are just burning. It's really lovely.

 

[Nakamova]

Hi Evamarie91, I'd like to add my welcome to the others.

Before you make any changes in your dosing, let your neurologist know, just to be on the safe side. In some cases side effects go away over time, but if your itching turns into a rash, and/or gets dramatically worse, don't hesitate to go to the ER.

Best,
Nakamova

 

[MAB]

Keppra is also well known to cause Kepprage-- intense rage/anger/depression. Finding the right vitamins can help. But I'm not sure the neurologist is going to work with you on that. Neurologists seem to rather prescribe more AEDs.

I take a lot of supplements. Most doctors don't say anything one way or the other about my supplements, other than Vitimin D. When my neuro saw the list she told me I was taking a lot of good things. She even recommended I up my CoQ10 from 100mg to 300mg. Occasionally you find a doctor that understands the importance of nutrition.

 

[Evamarie91]

I take a lot of supplements. Most doctors don't say anything one way or the other about my supplements, other than Vitimin D. When my neuro saw the list she told me I was taking a lot of good things. She even recommended I up my CoQ10 from 100mg to 300mg. Occasionally you find a doctor that understands the importance of nutrition.

What supplements are you on? Do you find them helpful?

 

[MAB]

Hi Smiley! I don't know your real name . I am really doing this just to see if I can be helpful to my family and friends, but every single one of them has told me that they don't feel like I am a burden and they don't want me to hurt myself with these drugs just to see if I can drive. I might stop taking Keppra today because after my last dose I have been inceasantly itchy. My arms and my face are just burning. It's really lovely.

How long have you been on the Keppra? After I was on it 4 days I thought I would scratch my skin off. My eyes and nose started swelling. Very scary. My neuro helped me ind a 24 hours pharmacy (on a Sunday night) so I could start on predisone. It took an entire 6 days of meds to get the itching and swelling under control.

 

[Evamarie91]

I've been on it since Tuesday- so four days. I have only taken one 250 mg dose per day with supper. When I first started on meds with him he told me that if I felt weird at all I needed to stop my meds and call him. I keep reading that bad things happen when people stop Keppra, so I am currently wondering why I want to be on a drug that I may be powerless to stop. I do feel a little congested, but since I'm not used to what my body feels like on drugs I have no idea if it's just a little winter time cold or the medicine. There is no rash or evidence of swelling. What was your dosage on the Keppra?

 

[MAB]

I've been on it since Tuesday- so four days. I have only taken one 250 mg dose per day with supper. When I first started on meds with him he told me that if I felt weird at all I needed to stop my meds and call him. I keep reading that bad things happen when people stop Keppra, so I am currently wondering why I want to be on a drug that I may be powerless to stop. I do feel a little congested, but since I'm not used to what my body feels like on drugs I have no idea if it's just a little winter time cold or the medicine. There is no rash or evidence of swelling. What was your dosage on the Keppra?

I was taking it twice a day and my doctor said since I had been on it for such a short amount of time it would not hurt to stop it cold turkey. You should check with your doctor though. I think, but am not sure, I was taking 500 mg twice a day.

 

[Evamarie91]

Thanks. I'll check up with him. I feel bad because my first try with Keppra involved me finding a rather large purple and red rash on my hip with in a few minutes of taking the first dose. It turned out to be some weird insect rash, but I was freaked out by the strange time correlation and called my neuro in a rather distressed state. I'm trying not to be that patient who is a total pain in the butt. I've heard that all AEDs are prone to causing itchiness, but almost all of them also seem to say that if you feel itchy you need to contact your doctors.