keppra issues getting worse even after dose change

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You know your body best. I was on keppra foe a month, and had bad panic/anxiety attacks and eve rage attacks that brought the cops to my house for the first time. After my last seizure the new neuro doc assgn to me said "oh we've had problems with keppra, we're gonna put you on something new" DUH! Problem solved., Docs know what;s in the books, you know what's in your body!
 
That's excellent, Penny. Lamictal is a great drug. I had so few side effects on it. It didn't even make me drowsy. But I would still choose horrible physical side effects above those mood issues that Keppra caused for me--that is where the real torture is, when you are behaving and feeling in ways that you know are not remotely you.
 
30 yrs on Dialantin: no seizures--dizzy w/ Keppra

My new neurologist wants me to get off of Dilantin
as it 'has long term bad effects'. She switched me to Keppra--on it for one day---woke up dizzy already.

I began having Grand Mal Seizures at 18. Have been well controlled with Dilantin (100 mil/2X day) and Primidone (250 Mil 2X's day), for 30 years. (I'm now 66). She said "Those drugs are not even OK'd by FDA anymore...and have Huge side effects".

Well, I wasn't dizzy w/ them. What do you all think?
Switch to Keprra, or stay w/ older meds?

:pop: Interested in your views.

Thanks for this site, too!

Tory/Magoo
 
Both of those drugs are still listed as approved on the FDA site. Dilantin can certainly have some horrible long term effects so newer drugs are preferred but I'd imagine that 30 years would tell you whether you're likely to experience those effects. Don't know why your doc says they aren't FDA approved, though, because they are. After the hell I've been through with meds changes, I think staying on drugs that work and that don't make you feel horrible in a million ways is a miracle worth holding onto. If I were you (which I'm not, clearly) I'd stay on the combo that was working in the first place.
 
Have tests revealed that you are having negative effects from the combo you were on? Dental issues that are serious?? I'm with Kirsten: if the combo works and isn't jeopardizing your health, stay with it! I can only hope for seizure control one day; when I do reach that point, I'll hang onto whatever medications are giving it to me with dear life!
 
Thank you Kirsten and masterjen for responding! I *greatly* appreciate you taking the time to do so.
After taking one Keppra last night, waking up dizzy, taking another this am...feeling even worse, I'm beginning to agree with you all.
For years I have NOT switched as my view was:
"If it's not broken, don't fix it".

However, my memory was getting worse.
However, now I'm seriously Googling about seizures,
Epilepsy *(Grand Mal), and memory. Here's what Aarp.com said:

Alternatives: Many patients with seizures do well on phenytoin (Dilantin), which has little if any impact on memory. Many patients with chronic nerve pain find that venlafaxine (Effexor) — which also spares memory — alleviates their pain.
Click to expand...


So? Should I give it 5 days or just return to my regular medications? :pop:
I think just return to the regular, successful meds: Dilantin and Primidone.

Thanks for your help. If you read this and have any other views,
or similar ones....please PLEASE feel free to chime in. :hugs:

Love to you all,
Tory
 
PS: masterjen...
You asked: "Have tests revealed that you are having negative effects from the combo you were on? Dental issues that are serious??"

I forgot to answer that (doh!)

Ahhhhhhhhh NO, negative on both, except a bit
with lower gums but I've had that since I was on Dilantin
at 18 yrs. It has not gotten worse.

:banana: <<< love this guy :)

Tory
 
I feel terrible on keppra too. been taking it since friday .feel like a zombie, stomach hurts, dont care much about anything, feeling angry, just want to sleep.
 
horsehead said:
I feel terrible on keppra too. been taking it since friday .feel like a zombie, stomach hurts, dont care much about anything, feeling angry, just want to sleep.
Click to expand...

Sorry, Kepra!
Having been in a cult for 30 years and escaped out in 2000:($cientology... where "everyone thinks they
are a doctor")...I try to make sure NOT to act like one, to others.

So just as an on-line friend, were you on s/t else that worked better?

And what made you switch to Keppra?

I switched as my memory is getting worse....so I *thought*
it was due to Dilantin. Now w/ my own research---I found out Dialntin is not that bad re memory, but the other medicine I take with it (Primidone) Is.

Wish you well :woot:

Tory
 
I was on keppra quite awhile ago and did well on it docs took me off because of one video eeg that was normal. i couldn't get on any meds for years then i went to a new neuro and was put on klonpin. that worked for awhile but then seizures came back went to a neuro again and was put on keppra
 
I've been on Dilantin/Primidone successfully
for 30 years.
Two days ago a new neurologist put me on Keppra (just switching one
Dilantin-to one keppra).

I felt worse than when I was a Hippie and we used to take "downers"---it was AWFUL. So she said cut the one pill in half, which I did.

Today I slept most of the day. I'm done. I called her and said "Forget it---not going to change. Am going back to Dilantin and Primidone----no matter how bad the side effects are, from doing research in many areas, Keppra has it's own bad ones too.

Good luck to you, Penny. Just wanted you to know you're in no way alone on how you feel.

My best,

Tory

And thank you to each person who mentioned:
"If it ain't broken, why fix it?" <<< that was my 1st thought, too. :)
 
I'm not sure i can handle keppra either. i haven't felt good for even a minute since friday. my stomach feels like its tearing itself apart. dont want to eat. glad you are going back to meds that work.
 
horsehead said:
I'm not sure i can handle keppra either. i haven't felt good for even a minute since friday. my stomach feels like its tearing itself apart. dont want to eat. glad you are going back to meds that work.
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Penny,
Remember this: *I* am NOT a Doctor. I'm just a person w/ Epilepsy
telling you what happened to me. So please check with your Doctor.

However, IF Keppra is not working,there are MANY other types of anti-convusants....so I'd sugggest asking your Doc to switch, or get
a 2nd opinion from another Doctor. You should not have to feel that
bad, imnsho. (Again...just my personal opinion).

With medicines today,one should NOT have to feel that bad, I don't think. I'm better already, today, having stopped Keppra. Nearly back to "Normal".

Again, good luck to you, Penny. Please make sure you get the HELP you need!

Best to you,

Tory
 
Tory,
I posted on the 7th that I had talked to my Neuro Monday and the changes we are making. You might want to check all the posts next time. :)

also, that was a post by horsehead that you quoted, not me.
 
yea its me not penny anyway stopped the med last night no better yet. called the neuro haven't heard back yet
 
Ok, sorry for the mistake, Penny
and Horsehead. Thanks for clarifying that.

Penny....I did read your earlier post from the beginning..I just got mixed up. :)

Horsehead: Good luck~:e:

Thanks to you both, :flowers:

Tory
 
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thankyou better now . Neuro wants me to try depakote not sure if i spelled that right
 
horsehead said:
thankyou better now . Neuro wants me to try depakote not sure if i spelled that right
Click to expand...

So glad you're feeling better. I had a bad experience with Keppra doses over 1000 mg at night: I would get to sleep fine, but then wake a few hours later with my mind racing with very weird thoughts, and I could not get back to sleep for hours. It wasn't panic, as my breathing and heart rate did not increase or become irregular, I wasn't suddenly flushed or really cold; just could not stop my mind from running 100 miles an hour. I put up with it for a week with no sign of improvement, and then phoned the dr. to say I was stopping the increase and that I'd rather have a nocturnal seizure than go through another night like I'd been having. I went back to the 1000 mg at night and after the second night at the lower dose I was fine.
 
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