Hi - Your Input

[tangi]

Hi everyone. I have been on 300 mg/daily of Dilantin for nocturnal tonic-clonic seizures since 10 yrs old, diagnosed with idiopathic epilepsy. Seizures well controlled when adult. Focal seizures started a few years later.

My next doctor put me back on Dilantin 300mg mg/night and Keppra 1,000mg 3 times/daily for focal seizures. My doctor and I were still discussing looking for a drug to handle my tonic-clonic seizures to allow me to come off the Dilantin. The cocktail I was on seemed to worked well for a while even though I never felt good. Then for the first time in my life, my Dilantin levels went too high out of range and had problems maintaining the correct range. I got very sick and have never fully gotten back to

Currently, I am on Dilantin 50mg/Am 100mg/PM, Topiramate 75mg/AM & 100mg/PM, Keppra 1,000mg 3xDaily, Lyrica 75mg/AM and 150mg/PM. This seemed to work better controlling the seizures, but I can no longer remember things or concentrate well. This was the first time in my life that I was able to take this small amount of Dilantin and I was happy about that.

I will now start taking Vimpat and Dilantin. Plan is to slowly decrease the Dilantin. I am not thrilled with what I read online about Vimpat, but I know outcomes are different for everyone. I don't like focal seizures, but the nocturnal grand mal seizures are a nightmare I don't care to revisit. It scares me every time I switch medications.

Is anyone taking Vimpat for tonic-clonic seizures that it is working well for them? Has anyone taken Dilantin for almost a lifetime to control tonic-clonic seizures and then successfully switched to another medication? Thanks for your feedback.

 

[lovemyladybug]

Hi everyone. I have been on 300 mg/daily of Dilantin for nocturnal tonic-clonic seizures since 10 yrs old, diagnosed with idiopathic epilepsy. Seizures well controlled when adult. Focal seizures started a few years later.

My next doctor put me back on Dilantin 300mg mg/night and Keppra 1,000mg 3 times/daily for focal seizures. My doctor and I were still discussing looking for a drug to handle my tonic-clonic seizures to allow me to come off the Dilantin. The cocktail I was on seemed to worked well for a while even though I never felt good. Then for the first time in my life, my Dilantin levels went too high out of range and had problems maintaining the correct range. I got very sick and have never fully gotten back to

Currently, I am on Dilantin 50mg/Am 100mg/PM, Topiramate 75mg/AM & 100mg/PM, Keppra 1,000mg 3xDaily, Lyrica 75mg/AM and 150mg/PM. This seemed to work better controlling the seizures, but I can no longer remember things or concentrate well. This was the first time in my life that I was able to take this small amount of Dilantin and I was happy about that.

I will now start taking Vimpat and Dilantin. Plan is to slowly decrease the Dilantin. I am not thrilled with what I read online about Vimpat, but I know outcomes are different for everyone. I don't like focal seizures, but the nocturnal grand mal seizures are a nightmare I don't care to revisit. It scares me every time I switch medications.

Is anyone taking Vimpat for tonic-clonic seizures that it is working well for them? Has anyone taken Dilantin for almost a lifetime to control tonic-clonic seizures and then successfully switched to another medication? Thanks for your feedback.

i have been on Vimpat for months now & it does ok at controlling my E , but started making my hair fall out , and every night after i take it i itch like crazy , so i have an appointment next week & im going To tell my doc that i want off of it , but like you said the side effects of theese meds are different for everybody .... as far as dilantin goes i've been on it for about 10 yrs now ( i've been on countless different things but they always keep the dilantin b/c they believe it's working the most i just need to find something to add to it to get complete control) I hope they find something soon though b/c i've heard too many horror stories about long term dilantin use & my previous neuro even said i was showing signs of dilantin toxcicity , so i think it needs to go ( but hey im not the one w/a medical degree so what do i know !) oh well i hope things get better for you

 

[tangi]

I feel your pain regarding the dependency on Dilantin. It is a love/hate relationship for sure. It gives with one hand and robs with the other. I will give Vimpat a try with a positive attitude and see what happens. The side effects you mention would not be acceptable to me. I hope you find a medication that will not cause toxicity. Thanks for your input

 

[Nakamova]

Hi tangi, welcome!

FWIW: I was only on Dilantin for a few years, for seizures that started in my 30s. I have to say, it had the fewest daily side effects and controlled my seizures (and was cheap!), so I do understand your qualms about making the switch.

Being on 4 meds can be hard on the system, and hard to evaluate in terms of side effects and dosages, so I hope you can successfully reduce the number of meds you are taking. In particular, Topiramate (Topomax) is known for cognitive side effects, so if you can take that out of the mix it may help with the concentration memory issues.

Best,
Nakamova

 

[jyearta]

Hi Tangi.

I was 1st put on dilantin and phenb. back in 1971.
I have since been on mysoline, tegretol-XR, Lamictal, Lodrane, carbamazepine and Keppra.

I could on tolerate the side effects of the others, I asked Dr. to PLEASE put back on Dilantin and phenb.

He said he would put me back on dilantin but would NOT put me back on phenb. I could not get an answer why.

Anyway I am now on Dilantin 5oomg daily and on klonopin every 4 hours. Now please know that klonopin is a addictive drug. My thinking was, well I will always be on medic. of some kind for my E. , so what if it is addictive.

I was wrong.....My seizures are under control.

Being on drug that is addictive scares me.

I am no Dr. - just want to share.

 

[tangi]

Thank you jyearta.

Does your doctor have you on vitamin D3 and calcium plan for your bones? Be sure to follow doctors directions closely so you will not have bone loss. I was on Dilantin long term and ended up with bone loss. I agree that being on an addictive medicine is scarey. Sometimes we end up having little choice. I am glad your seizures are now under control. Thanks for sharing your comments.

 

[jyearta]

Hi Tangi,

I have tried calcium and vit. D - when I took them (one at a time) I would have seizures.
I would stop the calc. seizures stop, same with Vit. D.

Hope you are having a better day.

 

[tangi]

Hi Jyerta,

I have learned a lot just in the few days that I have been reading on this message board. Still a lot more to learn. I know vitamins and other over the counter items can do weird things. I get sick from folic acid. I couldn't figure out what was making me so sick until I finally narrowed it down several years ago. It happened three different times so I won't try it again. I am glad you figured out what was triggering your seizures. Have a nice evening.

 

[jnb]

About the bone loss...this can be a really serious issue and you need to keep it in mind. I was on Dilantin for 10 years and as a result had borderline osteoporosis at 40. I never knew about the issue until I started working in the field of osteoporosis. I was really angry that three different neurologists never told me about the problem. Anyway, your insurance should cover a bone density test every two years and you should take it if you have been on Dilantin for a while. Most people don't realize that osteoporosis can seriously impact your life.