Can SE's of meds b worse then the sz's themselves?

[Miss Choccy]

Hi All,

I'm asking the question, 'Can the side effects of anti-epileptic drugs be worse then the actual seizures themselves?' because I've noticed that many people on here, on other epilepsy forums I'm a member of (about 5 & counting!!! lol!) and from my own experience that sometime side-effects are worser then the actual seizures themselves.

As you might have read, in my post titled, 'I'm new to this site' in the Foyer section. Please feel free to read this if you want to.

Susan

Miss Choccy

[epileric]

I have no doubt side-effects can be worse than seizures. My seizures aren't too bad, I'll have one then go on with my life. With a big one I might need to take a nap. About a year ago I was on Keppra & the side-effects made it impossible for me to function. I also went through high school with side-effects so strong that I had trouble comprehending lessons & rumours abounded of me using (illicit) drugs.

[Rae1889]

Lamictal can cause a fatal rash if it is not treated quickly at first detection. Which is a higher rate of death than going into status.

[Nakamova]

It's a tough calculation to make: A seizure can be fatal; meds can be fatal; Untreated seizures can get worse over time; meds can get worse over time. Seizure symptoms and post-ictal side effects can suck; Med side effects can suck....

[dfwtexas]

For me personally, I have mild side effects and it is so much better than having a seizure!

[Crystal11]

I would definitly say that some side-effects of meds, especially taking three myself right now- that side effects can be worse than the seizures. It all depends on the person, how often they have seizures and what kind.
Some people can't afford to have grand-mal seizures at work, or while traveling alone (like my friend who lives with me) and so she deals with being sleepy but not too bad.. she would rather know she has her meds working for her.
For me, I have complex partial seizures and drop attacks and cannot afford to go off my Tegretol- once I do, or lower it- which I'm bad at doing... its a no-no.. oops, I will start having drop attacks again. But I have a good excuse.
Ever since starting to take Keppra XR 3000mg, Tegretol XR 600mg and Lamictal 200mg a day- my migraines have gone way up in frequency. I had to go to ER recently for a migraine and allergic reaction to Excedrin Migrane medication. I was so so sick and had to get a shot of Phenergan which left me half catatonic and out of it to the point of not be able to speak or swallow water without choking or stand up on my own. very very scary for my twin sis and my friend to see.
I didn't realize this was happening for real until two days later..
Not getting that again!

Anyway- back to the topic. I think if a person has severe seizures and has many risks- then they may just put up with the side-effects. For me, I put up with the side-effects until I can't anymore. then I start reducing them on my own- I just don't see the point in talking to my neurologist when its hard to even call him or get his office to call me back. I understand that meds should never be stopped due to possible worsening of seizures or worse- status epilepticus.. but for me- this has never happened.
I am a very very stubborn person and take things into my own hands as far as meds go- since I've done it 6 times before.
The first time I did it- I have a real bad complex partial and went to ER for having two close together..
Anyway- no other event like that happened due to reducing meds since then.

You have to consider, the risk of seizures that may be uncontrolled to how your quality of life is on the meds you are given.
I hope some of this helps- please take care.

Crystal

[RobinN]

In the case of my daughter, they sure were. All four of them.

[stilldancing_98]

I would say yes on some drugs. I have that problem.I remember taken off of now I can't think of the med. Great Teresa. lol Oh Ya Depakote!When I got off that med my brain was so much clearer. I loved it.

[BuckeyeFan]

Personal side effects and seizures.

Though I have had many nasty side effects over the years, I am able to function fairly well on my meds. Without them, I would probably not be able to live a "normal" life.

[Endless]

Three of the drugs I've tried had SE that were definitely worse than the seizures. Lamictal has been better. The side effects on lamictal are pretty bad in some ways (can't sleep, nausea, dizzy, headache, blurry vision, etc), but my seizures have been escallating over the last year, as they were for about 3-4 years before my diagnosis. Without medication I think I'd be in a pretty bad spot right now.

[sandi]

I also think it depends what kind of side effects as some are worse than others.
headache okay , Psychotic thoughts NOT!
It seems like for me if there is a bad side effect I will probably have it.
I think it's in my genetics to be soo sensitive.
I can't even take cough medicine anymore.

[Meetz1064]

deal with things like headaches--normal ones--and hair loss, if I have to.

But when I get stupid things like kaleidoscope effects, Energizer Bunny attacks (ever done 6 hours' worth of work in 20 minutes?) and what not, then NO, those side effects are NOT for me, and that particular anti-epileptic drug HAS TO GO.

BLECH.

[carolyn]

I am also one of those hypersensitive to the side effects of meds.. And I hate it. I hate pills in general :/.

I find myself wondering whether it's really worth suffering through all those side effects when I am getting them. And then I reduce the dose to see what will happen and everything gets out of control and I realize that even though I feel crappy on meds, I can study, work, and have some fun, which is not possible with constant seizures..

So I guess whether side effects are worse than actual seizures differs from person to person. There are 'costs' associated with each.

[stilldancing_98]

I would be dead without my meds so that is that. But I hate some side effects of them.Ugg.

[Random]

For me anyway I think the medication sucks.

I'm on keppra for a mild form of Epilepsy as I've only had two seizures in my life. Its really expensive too 150 euros a month or like $200

The side effects are horrible...

• .I can't drink without getting sick (as in vomiting) and even when I don't drink I get sick at least once a week
  I have lost a stone of weight
  I have no appetite some days and no matter how much I force myself to eat on these days it just wont happen
  I am tired all the time
  I feel weak most days
  I can't sleep
  I've missed work + college due to these side effects

this being said..the idea of having another seizure freaks me out I'd prefer to be on the medication knowing I'm less likely to have one then having one and hurting myself

I'm just worried about my general health. Because I'm tired and weak all the time and I have college and work in a creche at the end of the week I don't have the excitement to go out and have fun with my friends any more..and its already been 4 months of this.

[stilldancing_98]

Oh Random, I could not live like that. Well I did when I was younger. But honey talk to your Doc. and get that taken care of. Like leave a message tonight for tomorrow. You are probably dehydrated and my epilepsy is not mild. Please let me know what's going on.

[ajax]

Meds can be undeniably worse. I was ataxic for 3 weeks once when I was over-medicated. At no point could I walk a straight line during those weeks, and the levels would fluctuate throughout the day. It was like Fear and Loathing minus the euphoria. I found myself at the farmer's market when the world turned upside down- it was all I could do not to take out merchandise tables and small children.

I literally struggled at times to stay on the sidewalk. My walk home usually took 15 minutes and there were days it took me nearly 3 hrs. I live in a college town and I'm sure everyone just assumed I was drunk off my butt. I was stopped at least half a dozen times by the cops for public intoxication. If my job-finding prospects weren't already limited enough.

My awful neurologist (whom I've since fired), refused to change anything when I told her I sincerely feared I would be hit by a bus. At least death by seizure is painless, not to mention less traumatic for innocent school children and people responsible for cleaning those kinds of messes up.

[Frink]

Let's see, nausea/ vomiting, dizziness, confusion, extreme fatigue, intense bone pain, increased seizures, irritability and double vision 24/7 from the meds or a few seconds of seizure followed by a couple hours sleep?

I will take the seizures any day over the anti-epileptic drug's. -insert wink here-

[paradise survivor]

Hey now, let's not forget......oh yea MEMORY LOSS!

[Hand of Blood]

i hate the side effects.... tegretol is the worst!!!!since i been on them its been hell.... fell like im stoned all time it made me free from sezuires for 4 years but not they are back. im started to take keppra i know i hear bad things about them but hope they better than tegretol and i hope to get off these meds soon