this is my 3rd time doing this because im a new member, so please bear with me----im amilie. im 65 and about 25 to 30 years ago i went thru a bitter divorce. i was given valium. i was never told to come off it gradually., so i stopped. i had a grand mal seizure. ive been on dilantin since. 3/day . i was ok except for 1 0r 2 seizures. i dont know why, the dr doesnt know why. i dont have epilepsy. now, all of a sudden i developed periferal neuropathy in my hands and legs. this is almost 1 year already. 1 neurologist said it can go on its own. it was better for awhilem, but now its back and bad. i dont drink. i dont smoke. i dont have diabetes.my mom died last june from alzeimers and i have 2 bleeeding ulcers from that. i have arthritis in my whole body. i had 2 neck operations. now im told i have high liver enzymes and this has to go from dilantin to kepra. i had a hell of 4 days i cant even begin to describe. i wont do this. i cant. i cant take anymore of it. im remarried and my whole life has changed. everything was good till this neuropathy started. i dont have epilepsy. i have a withdrawal symtom from a med i was given and the dr never told me how to get off it and it goes back to 25 years. i also tried lamictal. no good. i went from neurologist to neurologist. im an active perwson, but this is taking my life. i cant take much more and i was wondering if anyone else had this experience or 1 like it. i dont wish this on anyone, but im willing to get off the dilantin and no more meds. im seeing my neurologist tues. i honestly dont know what to do anymore. im in a dilemma here. my instinct says get off the dilantin and nothing more but is that the answer? i know its hard to get off the dilantin. im willing. i was told even if i do go from 1 med to another theres no guarantee anyway. i just cant take anymore. id appreciate some suggestions because my husband and i are running out of options here.
i dont know where to turn
- Thread starter amilie
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MuayThaiFighter
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Well first of all im sorry your going through so many things.
I haven't taken Dilantin but I haven't taken drugs that worked for my benefit in regards to controlling seizures but the side affects were just way to much. My best advice is to draw out the pros and cons of this drug.
As for benzos, I can relate to the seizures a sudden cut down those drugs can cause. Regardless if you have seizures abruptly stopping drugs like valium can be fatal. Seizures can and do happen.
How long did you take valium for? And when was the last time you had a dose of valium?
I haven't taken Dilantin but I haven't taken drugs that worked for my benefit in regards to controlling seizures but the side affects were just way to much. My best advice is to draw out the pros and cons of this drug.
As for benzos, I can relate to the seizures a sudden cut down those drugs can cause. Regardless if you have seizures abruptly stopping drugs like valium can be fatal. Seizures can and do happen.
How long did you take valium for? And when was the last time you had a dose of valium?
thank you for your fast reply and im sorry for what youre going thru too. i took valium for a few months 25 years ago when i went thru a bitter divorce,. the dr never told me to stop gradually. i never took sedatives before and i didnt know, his mistake is causing me and my husband a hell like i cant describe. i was taking diilantin. it was ok. then all of a sudden i got the neuropathy and im told its from the liver and have to change meds.i cant. itried for 4 days--i cant even begin to describe it--lamactal and keppra. i lost count of how many neurologists i saw, they know nothing. 1 took me off 1 pill and in 2 hrs i felt a seizure coming, so on my own i went back to it and was fine.tues i see my neurologist--my enzymes are high in the liver and maybe she can give something to get them normal. ive had it. i cant do this anymore.if she cant give something to get those enzymes down, im thinking to let it go. i cant start a new med now--1 out and another in. in have bleeding ulcers and its killing me already.just the stress alone will bring on another seizure.if the neuropathy didnt come, id have just continued with the dilantin. now its a mess and i do blame the 1st dr for this, but what does it matter now? the damage was done. there are no guarantees this will get better even if i do get another med. im hard to deal with on new meds. im not allergic. it s just difficult.