ADVERTISEMENT

Changing from Dilantin to Clobazam

  Hi everyone, I am just new here but have had epilepsy for 20 years.  I have recently had a few seizures, now my meds are being changed to clobazam.  Due to the side effects of long term Dilantin use.  I take grand mal seizures and am a bit nervous if this clobazam 10mg a day will be as effective at the 300 mg of dilantin a day i take now?  Can anyone help ease my worry?

thanks Niki

Comments

Re: Changing from Dilantin to Clobazam

Hi Niki,

I was on 400mgs Dilantin  daily for 40 years and began the switch to Keppra last year at this time.  Too many side effects: Bone loss, neuropathy, gingivitis, etc)  Epileptologist took reduction very gradually.  I've been at only 25mgs daily for the last month and was told today to finally stop Dilantin completely. 

 I had the very same concern as you: After so many years of pretty reliable control, would any other drug serve me as well? I'm happy to say that the answer is yes.  I've experienced simple partials, but I've not had a grand mal in 5 years.

Certainly, my body had to make some adjustments, but I had a successful switch from Dilantin to a new med.

Good luck to you, and keep us posted!

Anna

 

"...Only God never changes." St. Theresa of Avila

Re: Changing from Dilantin to Clobazam

 

Thanks for your support.  I am just worried that clobazam has to be used along with other meds. From what i have read it seems that it mostly is used along with another medication.  Yesterday I read that it is addictive as well.  if there is anyone who is or has been on this medication I would love to pick your brain. 

thanks again Niki 

 

Re: Changing from Dilantin to Clobazam

I have been on Dilantin for 25 years, I still have partial seizures.  I have seen many Neurologists and none of them have really been able to help me out.  I just saw another one today and she suggested I take Clobazam before going to bed to stop the seizures I have in my sleep.  I am just frustrated with all of this and would like to find a drug out there that works! 

Re: Changing from Dilantin to Clobazam

Hi Nikic,

My story is a bit different but you might pick up some stuff from it. I was recently on a combination of clobazam and lamictal, 10mg of clobazam am/pm and 300mg lamictal am/pm. The regularity of my complex partial seizures decreased but the severity of them increased when i did have one. The neuro then increased my clobazam to 20mg at night because mine are generally nocturnal, this however still didnt help. He mentioned that with clobazam people can build up a tolerance to it and their levels would need to continue increase to manage their seizures, but coming off it is very hard. When i went to see him last month i mentioned this and said that i dont want to keep increasing my levels. He then decided to reduce my clobazam levels back to 10mg, but add in dilantin aswell. I am now on my original levels of lamictal and clobazam along with 300mg of dilantin at night. The past month has been good but im just waiting to see what happens next.

Good luck with your change.