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Is Dilantin making me worse?
Thu, 07/14/2005 - 15:21Topic: Medication Issues
Hi all,I am on 300 mg on odd days and 400 mg on even of Dilantin. I know that it is a "baby-dosage", but I swear, ever since I started Dilantin, my seizures have become worse. Has anyone else experienced this? I feel like I am in a constant absence seizure (but that could also be from the med), but I know when I actually have one (or when someone tells me so). I've been having more atonic and complex partial since I began the med as well. I know the dr. has my best interest at heart, but last time I was there, he was talking about increasing the dosage if I was still having seizures! Then again, he thinks I am a good candidate for VNS...This is truly freaking me out. I have been on most of the anti-seizure meds because I was initially diagnosed as bipolar, and none seemed to have an effect (except Klonopin...I'm also taking 4 mg a day of that and it calms me). I've gone from a "normal" working person, to someone who is almost terrified of leaving the house...my husband has to take me to the doctors and whatnot because my license was suspended...waiting for disability to kick in...the whole nine yards.I appreciate your feedback!Thanks,Stephanie
Comments
RE: RE: Is Dilantin making me worse?
Submitted by steffles on Thu, 2005-07-14 - 15:21
Thanks Bruce, I will definitely check out the site. I'm not totally considering vns, since I too have heard of the side effects (and being solidly left-handed, don't want them to ruin that!), but I was just mentioning it for fact. Right now, I'm torn between the meds and having to apply for disability (cross your fingers for me). Since the diagnosis of bipolar was removed once my psych saw the MRI, she has reduced it to "mood disorder due to seizure disorder" or some to that fact. Basically, I am always manic and they can't do much about it, but drug me, since the head injury I sustained pertains to that part of my brain.Thanks again,Stephanie
RE: Is Dilantin making me worse?
Submitted by valhdz on Fri, 2005-07-15 - 10:13
I was taking the same dosage for awhile until it stopped working on me.. Dr's knew that Dilantin was not the right med. for me... I was switch over to Keppra and Lamictal, i being do so much better and i have been seizure free for over 4 months... Dilantin always gave me that weird feeling like if a seizure was coming because of even and odd day dosages..... Diantin does not work for everybody , some people do good with it and some don't. Have your dr. switch you over to a better med... Just make sure that the dr. slowly takes you off dilantin and slowly put you on a new med.. sometimes too much of dilantin will take the effect of the new med. you will take... Please let me know how you are doing if you switch over to a new med.... You can reach me at valeriano.hernandez@gulfaero.com or 972-333-2274
RE: Is Dilantin making me worse?
Submitted by grez-monkey on Thu, 2005-07-14 - 09:39
Yes Stephanie, I too ended up getting more complex partials and simple partial seizures, but it was when I was taking Dilantin and Lamictal. One neuro was the person who prescribed me to take it, but due to the problems being increased over the following years and he wanting to continue increasing one of those two meds, I said to him, enough is enough. I was then scheduled and went through a VEEG, and the results from it were that the epileptologist in charge of the whole ordeal found the one of the meds was knocking the strength of the other. He automatically switched the dilantin to what's called divalproex (slow/extended release of valproic), and just in that first month the cps lowered way down in frequency, and completely became under full control about 15 months later. All of this took place from about 1997 to 2003.
Now, as for your doctor's thoughts of you being a good candidate for the VNS. I'd like to seriously recommend that you use that as a last choice and possibility. Reasons why I'm saying this is due to many of the shared stories I've seen on other online epilepsy support groups that they're having more problems with where the contraption is implanted and not much of a change with controlling their seizures. Problems with discomfort along the left side of their neck, interference of speaking and coughing, along with other bad side effects. I never planned to do the vns when I found out about it, and now there's no way in hell that I'm going to do it, period.
Look into other alternative treatments that are out there, but not suggested by doctors. The alternatives may become more helpful than just being on what you're on now. I posted my story about an alternative epilepsy treatment plan on this community forum. It has apparently worked very well for several other people with epilepsy because their stories are available online. My results with it are that my seizures are coming down in frequency and in strength.
Here's one website that should lead you to the thread where I posted what I'm working with.
http://communities.epilepsy.com/epilepsy_community?go=885066
Just wanted to tell you about it. If you have any questions, ask away, and I'll help you look for answers.
Bruce CJ
Yes Stephanie, I too ended up getting more complex partials and simple partial seizures, but it was when I was taking Dilantin and Lamictal. One neuro was the person who prescribed me to take it, but due to the problems being increased over the following years and he wanting to continue increasing one of those two meds, I said to him, enough is enough. I was then scheduled and went through a VEEG, and the results from it were that the epileptologist in charge of the whole ordeal found the one of the meds was knocking the strength of the other. He automatically switched the dilantin to what's called divalproex (slow/extended release of valproic), and just in that first month the cps lowered way down in frequency, and completely became under full control about 15 months later. All of this took place from about 1997 to 2003.
Now, as for your doctor's thoughts of you being a good candidate for the VNS. I'd like to seriously recommend that you use that as a last choice and possibility. Reasons why I'm saying this is due to many of the shared stories I've seen on other online epilepsy support groups that they're having more problems with where the contraption is implanted and not much of a change with controlling their seizures. Problems with discomfort along the left side of their neck, interference of speaking and coughing, along with other bad side effects. I never planned to do the vns when I found out about it, and now there's no way in hell that I'm going to do it, period.
Look into other alternative treatments that are out there, but not suggested by doctors. The alternatives may become more helpful than just being on what you're on now. I posted my story about an alternative epilepsy treatment plan on this community forum. It has apparently worked very well for several other people with epilepsy because their stories are available online. My results with it are that my seizures are coming down in frequency and in strength.
Here's one website that should lead you to the thread where I posted what I'm working with.
http://communities.epilepsy.com/epilepsy_community?go=885066
Just wanted to tell you about it. If you have any questions, ask away, and I'll help you look for answers.
Bruce CJ