Dilantin, keppra, lyrica

[lovenatti]

I'm taking;

200mg of Dilantin 3x a day
1000mg of keppra 3x a day
150mg lyrica 3x a day

is anyone on similar doses? is this normal?

it seems to be working but I'm EXHAUSTED and this is double/triple the doses I was on previously.

any input is appreciated... thanks

 

[Nakamova]

There is no "normal" when it comes to AEDs -- everyone achieves seizure control differently and at different doses. The ideal is to try and do it with just one med, but for some it takes two or three. For still others, meds don't work, and things like surgery are considered. Another route to try is diet and/or neurofeedback. For refractory seizures they've been shown to make a difference.

If you feel like the fatigue is a problem, ask your neuro about trying extended release versions of the meds if they're available. XR versions can sometimes even out the side effects, and there's the benefit of cutting down to once a day dosing.

If you do have seizure control on your current regimen, ask the doc about easing back on one or another of the meds. There should be intermediate doses you can try, unless you've already found them insufficient.

Just for reference:
Standard adult Dilantin dose = 300 to 400mg per day.
Standard adult Keppra dose = 1000 to 3000mg per day.
Standard adult Lyrica dose = 400 to 800mg per day.

 

[lovenatti]

thanks for your reply- i found your standard doses very helpful (the ER doc was shocked @ my Dilantin dose)

I hate all these meds. I'm tired all the time and I think keppra makes me depressed... I complained to my nuerologist, but he's kinda on the same page as what you're saying- if it's working, leave it alone. he did say that later on (after a period of being controlled) if I wanted to try and lower my doses, I'd have to be hospitalized with constant EEG/video monitoring for 5-7 days. not my idea of a good time... sigh

on top of all the increased dosages, I had a 24hr EEG that came out normal. is that because I'm under control now? I've only had 2 seizures in the last month, and they were much smaller! 30 secs? seems to be gradual changes

Anyway thanks again. epilepsy has been the hardest thing for me to understand since my car accident/brain injury. very incosistant w/different dr's saying different things... I appreciate your input. often patients are the most educated!

 

[Nakamova]

The normal EEG could indicate that your meds are doing the trick. When I'm medicated, I have a clean EEG as well.

I'm surprised that your neurologist said you'd have to be hospitalized with EEG monitoring while lowering your dose(s). When I've done that in the past, that's not been a concern. My neurologist has offered the hospital option when I was tapering off altogether -- but only if I felt anxious, not as a mandate. During the taper, she did have me come in for EEGs at different intervals during the 4-month process to see if my EEGs went from normal to abnormal (which it did).

 

[momof3boys]

I take 3000mgs of Keppra XR each day for seizures. The medication comes in 750mg tablets, so I take two pills in the morning and two pills at night (1500mgs twice a day). Before March of this year, i was taken Carbatrol with that too. 1200mgs of that a day, til I had my VEEG and my dr didnt think I needed both medications. I feel like I have alot more energy just by not having to take the Carbatrol now!

 

[Daph18]

New

I take 350 mg of Dilantin and 45 mgs of Phenobarbatol each day. My wife thinks I am anti social at times. She trys to mentally challenge me by asking me to due sums etc and I admit my cognitive ability is challenged at times.
Not sure if this is caused by the Meds. My wife picks out little things that I forget and holds these issues against me. She is embarrassed to take me out to see her friends because I am quiet and mind my own business. I am just living my life, working full time and trying to be the best father to my 6 year old daughter. She adores me. Gran Mals are controlled right now but had problems with long term Dilantin side effects in 2009. Found out Epilim and Keppra do not work for me! I would like to hear from anyone who has the same issues and I certainly welcome input.

 

[jyearta]

Hi Daph 18

I was on Dilantin and phenb. for over 20 years, along with valium to break the cicle of seiz.

After several Dr. put me on several other medic. ( I could not tolerate) I asked to back to dilantin and phe., My Dr. would not put back on phen. (don't know why) but he did put me back on dilantin.

I am now taking dilantin total of 5 100mg a day (working my way down-levels high) and I also take Klonopin 0.5mg at 10:00PM and 1/2 tablet around the clock.

FOR me with combo my seiz. don't come as often, they are not as sever, and they don't last long. WHICH is good.

My memory is bad (short term) and dilantin has caused me to be B-12 defic.

I get embarrassed alot because if it was the memory thing, then I looked druged.

I hope that you will find the support you need, the people here do care and understand, cause we are going through the things that come along with E. and seizures.