scared of keppra but lamictal isn't working...

[Maidenminx]

So I started my medication journey on tegretol. Still had a tonic clonic. They upped my dose and I developed photophobia and severe migraines. So I was switched to lamictal slowly. I've still been having seizures but no tonic clonics. I'm currently on 300 mg a day. The neuro doesn't really want to increase that anymore if I'm still having seizures, and I am. He's already mentioned lepers as the next possibility and the idea of keprage freaks the hell out of me. I've always had emotional instability so I really don't want to risk it.

So now I'm scared of my next neuro appointment. I don't want to change anything at the moment.

I'm almost tempted to lie to my neuro but that's probably not a good idea.

 

[Nakamova]

Some folks need higher doses of Lamictal (up to 5000mg/day) in order to get seizure control. Are you having any problems with the Lamictal at the current dose (other than the ongoing seizures)? If not, ask your neuro about slowly ramping up on the Lamictal to see if a higher dose helps.

If your neuro absolutely refuses, explain that you have good reason to avoid Keppra, and ask about any other medications worth considering. Don't lie to your neurologist, just be upfront about your concerns. The neuro can't make you take a medicine against your will.

Another possibility is trying a dietary approach -- some folks have found that the Modified Atkins Diet can help with seizure control.

 

[epileric]

I was on Keppra & I felt the same way about it. The good thing is that I was aware of what to look for because I knew of the possible side-effects, especially since I got a lot of them after upping the dose.

The side-effects are pretty bad but not everyone gets them. My neurologist told me that the less effective it is on someone, the more likely they are to get the various side-effects.

Despite how awful an experience it was I have to say I"m glad I did it because if not, I know I'd always wonder if that one drug was the one that might have worked for me.

 

[thornton8000]

I felt the same about keppra and I'm glad I tried it and it so far it's been the med that stopped my seizures for the most part I've had 3 total in 14-15 days instead of the many many many more that I was having before that, yes I have some issues with it but I knew what to expect before starting it so I know what to deal with as it starts, and I'm glad I started it, it's been the med that works instead of trying others and finaly getting to keppra, now if it starts not working and we have to go another route ok I;m fine with that to but I understand your thought process as well.
Good luck but be open and honest with your neuro as well so they know what you are thinking too.

Mike

 

[Cherriuz]

I wouldnt lie at all about how you feel, i think its best to be totally open and honest and if you have a concern about whats going to happen you should talk it through with your neuro for sure and hopefully together you can work out a plan. I wouldnt base your opinion on everything you read and hear, it could work really well for you, so i wouldnt rule it out totally.

 

[Maidenminx]

Thanks guys. I'm less scared now.

 

[vanessa1148]

G'day. I was worried about Kepprage too - so worried in fact that the keppra sat in my drawer for a month before I would even touch it.

But....I've been taking it for about 4 months now and I've had no kepprage or moodiness whatsover. This is how it's affected me:

Bad stuff:

Made me super tired for 1st 3 weeks but it got better.
I was constantly thirsty and peed a lot, but this has also gotten better.
I tend to get tired quicker while exercising, also muscle pain lasts longer
Heavier periods (pretty sure keppra is causing that, but not 100%)
Low iron and vitamin D (dunno if Keppra is responsible for that or not).

Good stuff:

No PMS mood swings.
No more migraines
I don't blank out, or vague out anymore.
I can think much more clearly, also I can speak much better and am less likely to trip over my words.
No anxiety (I used to suffer with anxiety attacks from time to time)
Tonic clonic seizures are reduced to auras only (but they have increased my dose to stop them altogether).

Overall it's been a pretty good drug. But you must try it for yourself as everybody reacts to drugs differently. Try a tiny dose first (I am on 250 mg twice daily but now they are putting me up to 500mg twice daily).

Bit the bullet and see how it goes. let me know how you go.

 

[vallygirl]

vanessa1148...interesting that you are having heavier periods on Keppra because I am experiencing the same, although it never dawned on me that it was a side effect of the Keppra, I went off of birth control around the same time I started Keppra and chalked it up to that, I guess it could be related to either cause. To the original poster, I have not noticed any emotional side effects of Keppra, but then again I don't have a history of emotional issues and my doctor advised me that you are more likely to suffer from "kepprage" if you do have a history of emotional issues. The only other side effect I noticed (other than heavier periods) is a decrease in appetite. Its kind of strange because I will still get hungry at fairly normal times, but no foods will sound appetizing at all...really weird to be hungry and not want to eat but I have to force myself because I think low blood sugar may be a trigger for me.

 

[Maidenminx]

Interesting, I have the same problem with eating on lamictal. Low blood sugar is also a trigger for me so I often (stupidly) go for junk food. The other night I couldn't think of what to have for dinner so I had a big bowl of ice cream instead. Probably not the best of ideas but it made me feel heaps better.

 

[JustcallmeG]

I am also on Limictal, I have Grand Maul's as well. But im also on 2 other medications, that is not Keppra. If you really have that much of a worry about a certain drug, your dr should work around it, or at least try to. There are so many of them out there, so many to choose from. Do some research of your own, and see what you see. see if there are any new procedures out, that you want to investigate, or chat with your dr about. I have been with my current dr for about 6-7 years now, and he is my best friend, i can tell him anything. I even cursed him out once, an he told me i was right, gave me a fist pound, and said he was sorry. You don't have to just dread going, hold your head high, its your body, and your life. You hold the power.

 

[vanessa1148]

vanessa1148...interesting that you are having heavier periods on Keppra because I am experiencing the same, although it never dawned on me that it was a side effect of the Keppra, I went off of birth control around the same time I started Keppra and chalked it up to that, I guess it could be related to either cause. To the original poster, I have not noticed any emotional side effects of Keppra, but then again I don't have a history of emotional issues and my doctor advised me that you are more likely to suffer from "kepprage" if you do have a history of emotional issues. The only other side effect I noticed (other than heavier periods) is a decrease in appetite. Its kind of strange because I will still get hungry at fairly normal times, but no foods will sound appetizing at all...really weird to be hungry and not want to eat but I have to force myself because I think low blood sugar may be a trigger for me.

Hi Vally. My neuro tried to fob it off as 'peri-menopause' but I am pretty sure it's the keppra. It's just too much of a co-incidence that my periods suddenly got heaver within about 1-2 months after I began the Keppra. I hope it tapers off once I get more used to the drug.

But your theory sounds quite plausible too - heavier periods could be a result of stopping the pill - but time will tell.

 

[vanessa1148]

Yeah me too - low blood sugar causes seizures for me too. Again, I told this to my neuro but he said it doesn't cause it, it just lowers the threshold. It would be nice if my doctor actually believed me once in a while.