Recently diagnosed, very confused, and apprehensive about the medication

[Bran24]

Hey everyone. Was recently diagnosed with epilepsy after having a grand mal seizure on april 15 of this year. Had partials prior to this over the previous year. Eeg on May 4 demonstrated epileptogenic potential. Does this mean I have epilepsy or does it mean that I may have epilepsy? Just confused with everything going on and seemingly going on so quickly. Anyhow, the neurologist put me on generic keppra which I have yet to start taking. Really concerned with all the side effects I've read about this drug. Also I have not had any partials or anything thing since april 15. Should I take this drug even though I have had no symptoms since? Are the side effects as bad as I've read? Does my eeg showing epileptogenic potential basically mean I have epilepsy? Just so confused and not really sure where else to turn. Thanks for any help.

[epileric]

Sorry to hear about your recent diagnosis.

First of all, always take your meds whether you're having seizures or not. Anti-epileptic drugs aren't like cold medicine where you take it when you're sick & put it away when you're not. They need to be taken regularly to properly control your seizures. If you're not having seizures it just might mean that the pills are working, not that you're "cured".

I have to agree that all the side-effects of any drug look scary. The thing is that legally they have to document all the possible side-effects. Some people don't get any, some get them all. The only thing you can do is be aware of what they are & watch for them. Even with some side-effects the pills can still increase your quality of living if they get rid of or even just lessen your seizures.

Always be aware though of when the side-effects cross that line that your quality of life is now less than if you had seizures. Luckily, when I was put on Keppra the neurologist told me that the people who tend to get the worst side-effects are the same people that it doesn't work as well on (like me).

You might want to go the top of the page & use the "search" option. Try searching for Keppra, I know a lot of people have discussed it here.

[Endless]

Hi, Bran!

Welcome to the forum. I'm also sorry about your diagnosis. I agree, it really IS all very confusing. I was diagnosed about a year ago, and am still trying to figure it all out. The people in here help a lot.

(ĕp'ə-lĕp'tə-jĕn'ĭk) or ep·i·lep·tog·e·nous (ĕp'ə-lĕp-tŏj'ə-nəs)
adj.
- Having the capacity to induce epilepsy.

(pə-tĕn'shəl)
adj.
- Capable of being but not yet in existence; latent: a potential problem.
- Having possibility, capability, or power.
- Grammar. Of, relating to, or being a verbal construction with auxiliaries such as may or can; for example, it may snow.

It sounds like the doc found the spot that MAY be causing your seizures. Personally, they've never objectively pinpointed where my seizures are coming from.

I'm going to take a guess at what your doctor is trying to do with the medication. Seizures tend to form neural pathways in the brain that create more seizures, which create more pathways, which create more seizures.... you get the idea. And the seizures tend to get worse over time. I'm guessing he's trying to shut them down COLD so you don't have any more of them. Having your last one 10 days ago doesn't mean much. He'll look for about 3 years seizure free before he takes you off the meds.

I hate meds, too. But I take them. Keppra has lots of side effects, but not all side effects happen for all people, and they can be mild to troublesome, depending on the person. You don't know until you try it. If Keppra doesn't work out, you'll have something else to try out.

Hang in there. It's a long journey, but you are almost ready to take the first step.

[Nakamova]

Hi Bran24, welcome to CWE!

Technically an epilepsy diagnosis just means that someone has had more than one seizure. Since you've had simple partials plus this grand mal, then, yes it sounds like you have epilepsy. (Were the partials diagnosed as such at the time, or this a diagnosis in hindsight?) The EEG is basically confirming what the actual seizures indicate.

Unfortunately, the fact that you feel fine and symptom-free now doesn't mean that you won't have a seizure at a later time. (I'm symptom-free right after having a seizure, often for months at a time; I have had over 20 grand mals when unmedicated.) You need to consider the risks of having another seizure (injuries to yourself and/or others), or the risk that your seizures might progress (as they did from partial to grand mal) when deciding whether or not to go on meds.

Meds are no picnic, of course -- often they are the lesser of two evils -- but for many they work fine, and the side effects are tolerable (as in my case). The thing about anti-epileptic drugs is that everyone has different experiences on them -- what works for one person may suck for the next. I might have Side Effect A, while someone else gets Side Effect B. I might need a tiny dose, while someone else needs a big dose, or more than one meds. I wish I could guarantee that your experience on Keppra would be perfect or even tolerable but there's just no way to do so. I know of at least 2 people on Keppra who are happy with it. And as you've no doubt read, it makes some folks miserable. The only way for you to know for sure is to try it and see. If it doesn't work out, there are other meds to try, or you can consider going med-free (Never stop cold turkey though, and always check with your doctor first).

If you decide not to go on meds, let your doctor know. And do your best to be proactive about your overall health. Proactive Prescription for Epilepsy Avoid any known triggers, and if possible keep a journal so you can note any seizure-like symptoms.

An epilepsy diagnosis is extremely confusing. You're doing the right thing in looking for more info. I hope you feel free to ask as many questions as you need. CWE member can offer a lot of info, anecdotal advice, support, and empathy.

Best,
Nakamova

[Captkev]

I was just diagnosed too, and it sucks but man if there's even a chance meds could keep me from my next seizure then I want to be sure im on it. I go long periods of time with no symptoms too, but the times Ive lost consciousness Ive broken my collar bone, nose and T1 vertebrae. Side effects suck, but broken bones do too! Just my .02

[Bran24]

Wow, thanks to everyone for responding in such a quick manner!

Was completely freaked out by all the stuff that was going on and decided to try the interweb thing for a little support. I certainly didn't expect to get any and just completely disregarded my message. I guess I should not have done that because all of you guys were spot on... some more than others. But, really am amazed that anyone even responded, so thanks... to everyone!

Ended up starting the (generic) Keppra soon after I posted that topic on this website. Was way rough at first with sleeplessness and irritability out the roof. Was Jekyll one second and Hyde the very next. Was really embarrassed by my behavior and although I tried to control it, it seemed I couldn't. However, its been almost a month now and although I still get a little frustrated and short tempered from time to time, it sure is much more manageable and controllable than it was in the beginning stages. The sleeplessness has pretty much gone away altogether. Thankfully, those are the only two side effects I have experienced with this drug.

Seems to be a long road and I am glad I have found a place(CWE) where people actually show they care and really seem to understand what others are going through. Much Thanks to everyone again! I will certainly be checking in more often!

Appreciative,
Bran

[valeriedl]

Hi, Barn24!

You'll find out that this web site is great. You will usually get an answer to a question very quickly on here. I was on others for awhile, but I never seemed to get any reply for any of the questions I asked.

As everyone said, do not just stop taking the med. It is usually the doctors decision if you should stop taking them and you usually have to be weaned off of them.

Keep track of any of the symptoms of the meds that you are taking. If they get too bad discuess it with the dr and he may decide to try another med for you.

Also keep a seizure diary. If you have any more seizures, hopefully you won't because things are going good so far. Use a small pocket calander or even just a notebook, since it's the middle of the year and it may be hard to find a calander right now.

Write down the day the seizure happened, how long it lasted, things that you did during it - slured your speach, drooled, shook or any thing else. This way you can discuess it with the dr and he can make sure that he is giving you the right type of meds for what is happening.

Ask lots of questions on here and you'll get some great answers.

[chriswp]

Yes, I agree, the doctor can help you transition to new meds gradually with weird/bad side affects. I'm going to be trying some new meds to help minimize my Complex Partial seizures. Also trying to get enough sleep and minimize relationship stress as much as possible, which also helps reduce my Complex Partials (sometime Simple Partial happen regardless, but these don't seem so difficult to live through). And also yes, I need to start documenting my seizure with a diary for my neurologist and me to study.
Look forward to lots of learning and discussions here.

[chriswp]

I meant, the doctor can transition you to new meds WITHOUT weird/bad side affects.

[gabbyg2000]

Hi, Bran!

Welcome to the forum. I'm also sorry about your diagnosis. I agree, it really IS all very confusing. I was diagnosed about a year ago, and am still trying to figure it all out. The people in here help a lot.

(ĕp'ə-lĕp'tə-jĕn'ĭk) or ep·i·lep·tog·e·nous (ĕp'ə-lĕp-tŏj'ə-nəs)
adj.
- Having the capacity to induce epilepsy.

(pə-tĕn'shəl)
adj.
- Capable of being but not yet in existence; latent: a potential problem.
- Having possibility, capability, or power.
- Grammar. Of, relating to, or being a verbal construction with auxiliaries such as may or can; for example, it may snow.

It sounds like the doc found the spot that MAY be causing your seizures. Personally, they've never objectively pinpointed where my seizures are coming from.

I'm going to take a guess at what your doctor is trying to do with the medication. Seizures tend to form neural pathways in the brain that create more seizures, which create more pathways, which create more seizures.... you get the idea. And the seizures tend to get worse over time. I'm guessing he's trying to shut them down COLD so you don't have any more of them. Having your last one 10 days ago doesn't mean much. He'll look for about 3 years seizure free before he takes you off the meds.

I hate meds, too. But I take them. Keppra has lots of side effects, but not all side effects happen for all people, and they can be mild to troublesome, depending on the person. You don't know until you try it. If Keppra doesn't work out, you'll have something else to try out.

Hang in there. It's a long journey, but you are almost ready to take the first step.

hi im new to this website and experience a lot of the symptoms you mentioned. I'm on lamcital now and recently I have been doubting myself and the whole world as well. The whole existence thing is really scary. idk if I'm really here or if it's just a dream that son I'll wake up from. Does that ever stop??

[gabbyg2000]

Hey everyone. Was recently diagnosed with epilepsy after having a grand mal seizure on april 15 of this year. Had partials prior to this over the previous year. Eeg on May 4 demonstrated epileptogenic potential. Does this mean I have epilepsy or does it mean that I may have epilepsy? Just confused with everything going on and seemingly going on so quickly. Anyhow, the neurologist put me on generic keppra which I have yet to start taking. Really concerned with all the side effects I've read about this drug. Also I have not had any partials or anything thing since april 15. Should I take this drug even though I have had no symptoms since? Are the side effects as bad as I've read? Does my eeg showing epileptogenic potential basically mean I have epilepsy? Just so confused and not really sure where else to turn. Thanks for any help.

I agree its scary it takes awhile sometimes for the doctor to fully diagnose you with epilepsy. They need to a lot of factors into their minds and try their best to solve the problem. But you cant just stop cold turkey on any epilepsy meds. They may cause another seizure as I've experienced a few times. Even if you feel like you can't take the sideeffects of the meds, tell your doc first dont stop right away

[gabbyg2000]

Wow, thanks to everyone for responding in such a quick manner!

Was completely freaked out by all the stuff that was going on and decided to try the interweb thing for a little support. I certainly didn't expect to get any and just completely disregarded my message. I guess I should not have done that because all of you guys were spot on... some more than others. But, really am amazed that anyone even responded, so thanks... to everyone!

Ended up starting the (generic) Keppra soon after I posted that topic on this website. Was way rough at first with sleeplessness and irritability out the roof. Was Jekyll one second and Hyde the very next. Was really embarrassed by my behavior and although I tried to control it, it seemed I couldn't. However, its been almost a month now and although I still get a little frustrated and short tempered from time to time, it sure is much more manageable and controllable than it was in the beginning stages. The sleeplessness has pretty much gone away altogether. Thankfully, those are the only two side effects I have experienced with this drug.

Seems to be a long road and I am glad I have found a place(CWE) where people actually show they care and really seem to understand what others are going through. Much Thanks to everyone again! I will certainly be checking in more often!

Appreciative,
Bran

I was on keppra before and I completely understand. I was super moody and it would make people really mad at me but I couldn't help it. I was a major bitch my mom liked to say so I switched meds
gabbyg2000