Switching meds Dilantin to generic keppra...new here please help me understand whyyyy

[hillygirl75]

Been diagnosed since 16 with juvenile myoclonic epilepsy. Had my first seizure in my sleep at 12 yrs old during a bad dream about a husky dog coming at me. Scary for a 12 yr old believe me so finally at 16 after my 4th seizure I was diagnosed with epilepsy. They gave me depakote and wow over two years I gained about 30-40lbs. Probably at 18 or 19 switched me over to Dilantin. Slowly weaned myself off when I was trying to get pregnant with my husband so I didn't take any Dilantin during pregnancy, I felt great but soon after birth was getting the myoclonic twitches and jerks and had to be put on Dilantin again. I recall dropping my daughter but thank God she was ok. Hurts and kills me to know I can't function properly like most people. Ok so a few years later I started weaning myself off Dilantin again to get pregnant with baby #2. I was doing well but during labor had a seizure and had to have an emergency c-section. Then was immediately put on Dilantin 300mg a day. About two years ago I been having seizures more often. The doc upped my Dilantin to 400mg a day. Now seeing a new neurologist he just started me on keppra 500mg twice a day and slowly taper off the Dilantin. Took my first keppra earlier but have read so many posts on how tired, emotional, moody and then some people cannot sleep. I have also read about the weight loss on keppra which I don't mind to lose 10lbs I am really scared because I have been on Dilantin for 20 yrs now I just turned 39 and my daughters have seen me have seizures and my younger one gets scared if I move my leg she thinks it's a twitch. Had a terrible seizure over 5 months ago. It hurts to have my girls see me like that I'm hoping keppra can control it better. Also the Dilantin has caused hair growth on my chin area, nothing freaky but bothers me. Oh and my memory seriously is bad. Can't drink alcohol or I get a severe headache the next day not that I need it but once in a while with friends would be nice. I need enough sleep to function. Of course that time of the month I have to be super careful. So I'd anyone can tell me how their transition from Dilantin to keppra is going it would be greatly appreciated.

 

[Evamarie91]

Welcome! I'm on Keppra 500mg x2 and so far I've been fine. I go back to my neurologist in April to make my dose higher. I supplement a good B complex and at least 100 mg of B6 on top of that. B vitamins are known to help with some of the side effects of Keppra, but everyone's body is different. Best wishes to you!

 

[kirsten]

Hi, Hillygirl and welcome. I'm in the process of going off Dilantin but I'm moving to Neurontin with Epilim. What I can tell you, though, is that if you were to read all the side effects of everyone who is taking any one anticonvulsant, it would look like a horror story. Lamictin is a great drug that so many people prefer, but if you went through these forums looking for lamictin side effects, you would want to stay off it for life. Same goes for tegretol and epilim and everything else. The side effects that others experience may not happen to you at all. The only way you can really know how you will experience a medication is by taking it yourself.

 

[marika853]

I agree with Kirsten. Everyone is different on every drug. I have been taking generic Keppra since 2006. It has worked well for me. Must be Very difficult with little ones for you. Hang in there.
Good Luck.
M

 

[daviscy60]

I have been in the process of switching from Dilantin to Keppra. Since last July. To make a long story short. I lost weight 20+ lbs. I get hungry but do not enjoy eating like I use too. At times just sit say hungry but what to eat??? Don't really care about much. Tired no energy and just really don't care about anything anymore. Wonder many times what it would be like to just go back to feeling normal. It has stopped the reoccurring problems I started having with seizures again though. Works to stop seizures but can make your life miserable. Weight loss yes but only good thing. But also don't feel like wt loss worth feeling so much like a zombie.

 

[hillygirl75]

We're you ever on Dilantin? And does the 500mg 2x a day control your seizures well? Just curious...I just cannot stand putting all these drugs in my body. I have read about chelated magnesium and how many people with epilepsy have deficiencies in magnesium?? I'm sure there's a better natural way to help cope :/

 

[Evamarie91]

We're you ever on Dilantin? And does the 500mg 2x a day control your seizures well? Just curious...I just cannot stand putting all these drugs in my body. I have read about chelated magnesium and how many people with epilepsy have deficiencies in magnesium?? I'm sure there's a better natural way to help cope :/

I'm assuming you're speaking to me. If not I'm sorry! The 500mg x 2 has me under partial control. I've never been on Dilantin, but I was on Depakote many years ago before they declared me cured. My absence seizures came back when I was about 13, but my parents didn't put me on meds because the doctor told them I'd out grow the seizures. He was wrong and now I'm trying to sort all this out myself (I just made a long story short). My neurologist thinks I'll only need 1500mg per day to have control, but I think I may need about 2000. We'll just have to wait and see. The bottom line with the medication is we can try to have uncontrolled seizures and live as normally as possible, or we can try to be controlled and have the ability to drive and more independence. I've done the former, but I want a car. I totally understand not wanting to take meds because I'm the same easy, but I don't think that's always the best option. If it makes you feel better I had some near panic attacks when I let the doctor start trying me on meds. That's why I'm on Keppra and not Lamictal-the anxiety I got from taking Lamictal was insane. The bottom line- try it and maybe it will work! I really like Keppra and I'm hoping my body will tolerate it and the seizures will end as the doses increase.

 

[hillygirl75]

Keppra rash

I have been in the process of switching from Dilantin to Keppra. Since last July. To make a long story short. I lost weight 20+ lbs. I get hungry but do not enjoy eating like I use too. At times just sit say hungry but what to eat??? Don't really care about much. Tired no energy and just really don't care about anything anymore. Wonder many times what it would be like to just go back to feeling normal. It has stopped the reoccurring problems I started having with seizures again though. Works to stop seizures but can make your life miserable. Weight loss yes but only good thing. But also don't feel like wt loss worth feeling so much like a zombie.

So I've been on keppra for five days now and omg it makes me dizzy and I'm starting to get a rash on my chest and neck...did this happen to you?

 

[hillygirl75]

Keppra rash after five days

Welcome! I'm on Keppra 500mg x2 and so far I've been fine. I go back to my neurologist in April to make my dose higher. I supplement a good B complex and at least 100 mg of B6 on top of that. B vitamins are known to help with some of the side effects of Keppra, but everyone's body is different. Best wishes to you!

Hey so five days on keppra and I've been getting dizzy bumping into walls...lol my kids think it's funny. But that feeling passes. I also get so tired and sleepy. But today I've had this rash and I'm itchy on my chest and neck. The rash is annoying, did you develop a rash as well when you started on keppra?

 

[Evamarie91]

Hey so five days on keppra and I've been getting dizzy bumping into walls...lol my kids think it's funny. But that feeling passes. I also get so tired and sleepy. But today I've had this rash and I'm itchy on my chest and neck. The rash is annoying, did you develop a rash as well when you started on keppra?

If you have a rash you may be allergic to the Keppra and you need to contact your neurologist or your pharmacist immediately.