Newbie worried about switching to Keppra

[mommyb]

Hi I am a newbie and a little nervous about this. I have a question about Keppra. My new neurologist wants me to consider switching from Dilantin and Diamox (which has kept me virtually seizure free for decades) to Keppra. He says the bone loss issue, and other side effects of the Dilantin are potentially serious enough to warrant the switch. I am a mom who is employed full time. I like the sound of Keppra, but am scared to death about switching. Work, driving, let's face it- life could become seriously compromised by this. Is there anyone out there who has been through this successfully? Is it worth it?

[RobinN]

Can't answer your question, but I did want to welcome you here to CWE. I know there has been a lot of information posted lately about Keppra. Others will be along shortly to chime in.

My 17 year old is med free at the moment. Alternatives are keeping her seizure free, where the meds tended to increase the activity.

Wish you all the best.

[Crystal11]

Welcome!
I was on Tegretol XR 600 by itself for a while, then changed to Dilantin which didn't work at all, back to Tegretol XR 600 with the addition of Keppra 3000mg per day. Keppra has helped me quite a bit and I was sort of worried too about adding it to Tegretol XR! Two meds for my complex partial seizures seemed to be a lot- but it is working for the most part. I've had seizures since I was 6 years old and for the majority of the time I was untreated. Mom thought seizure meds would do more harm than good- I am sort of glad I wasn't on meds from such a young age.. anyways each person is going to be effected differently and for the most part keppra either gives you a lot of energy for the first two weeks or you loose energy and feel sleepy but it all goes away. If you feel that your more short-tempered or angry at things that don't normally cause you to be anry, it could be a side-effect of it but you can talk to your doctor about it and ask if you should continue with keppra or change to something else.
I wish you the best of luck with the change over if you decide to do it.

Take care, be safe
Crystal and her guide dog Umbro

[epileric]

Welcome to the site. I think this is one of the more supportive online epilepsy sites.

My personal experience with keppra was awful. I was so spaced out that I didn't realize how effected I was by it. On top of all that my seizures got worse. Not everyone has bad effects though & according to my neurologist the less side-effects you get the more it's likely to lessen your seizures.

It can't hurt to try it but read up on the side-effects & be aware of them in yourself. You might even want to ask a your other half or a friend if they see any sort of changes in you.

You'll never really know if it's worth it until you try.

Good Luck.

[Meetz1064]

and how do you do?

It's nice to "meet" you! Welcome to CWE!!!!

Keppra.........BAH. I HATE that stuff. I had TWO reactions to it. I started out at one dose, became the Energizer Bunny on SPEED. Cut the back to 1/4 of the original. 9 doses later, I started seeing triple, and things were rotating...I had to guess which was the real thing........UNLESS I closed one eye, THEN I could figure it out.

BUT, don't let my experience put you off. My neurologist shook his head in disbelief, cuz it's rare that someone has those reactions, much less BOTH of them...

Enjoy yourself here at CWE. Feel free to kick up your feet and stay awhile. Check out all the rooms. Hopefully someone will bring fresh coffee.....I just burnt mine AGAIN. This Lamictal is making me tired, so I keep falling asleep while I am making it.........LOLOLOL

Take care,

Meetz

[skillefer]

Welcome to CWE. Switching meds can be scary. I went from phenobarb to Dilantin about 7 months ago. Like you, I work and drive...and now, I'm a mom to be. Switching can be nerve wracking and scary. If you are going to try a switch, then you might want to let your employer know (mine are really supportive...so if I DID have a seizure, they understood and followed the protocol that my doc and I had set up...which meant no ambulance, and instead calling my hubby). If you can do a switch over a vacation period, I'd do that instead. At least for a week if you have a paid vacation. If not, it might be a bit tricky. Just make sure that you have rides lined up and draw up a "what if" plan of action. If your married,make sure you and your hubby are both on the same page. Mine was really really supportive and made sure that I didn't even have to worry about housework or laundry while I was switching...(okay, I ended up with some laundry that got shrunk and turned pink when they started out as whites..but he tried. ). I'd be curious though as to why the switch in meds....if it's bone loss, then you can always take calcium supplements or other meds for that if Dilantin is still working well for you. OH, another thing to prepare for, Keppra can cause mood issues...if it does, then you might want to try a vitamin B6 supplement.

[mommyb]

Thank you so much for all of your replies. I am still going back and forth over this. Can't figure out if the risks outweigh the benefits. You all are so kind. Many thanks!

[katie's mom]

I thought I'd put my 2 cents in, too. Keppra has been a "magic bullet" medication for MANY epilepsy patients & has been hailed as having some of the fewest side effects. The most typical side effect is hyperactivity. Also a rare but serious side effect is "Keppra Rage" which will turn a normal, even-tempered person into a semi-violent Mr. Hyde-type for certain lengths of time. I have seen this in my sweet, caring little 4 year-old & trust me, it is scary. I do think that if you are in the majority of people who don't get the rage, it is definitely worth a shot because it is so much more of a user-friendly drug than Dilantin. I would consider asking your doc about giving it a trial period.

[dfwtexas]

I got diagnosed last year and Keppra has been my only drug...but it has been great for me in controlling my seizures! Best of luck and welcome