i just joined and im not too sure yet what im doing so here goes---im amilie. i have periferal neuropathy, but it all started 25 years ago. i was on valium because i went thru a bitter divorce. the dr never told me i had to come off the med gradually. i dont have epilepsy per se, but i just took myself off the med. i had a grand mal seizure and was put on dilantin-3/day.ive been fine since. im remarried now, but all of a sudden i felt a weakness in my legs and hands. i m told i have periferal neuropathy from my liver because the dilantin goes thru the liver. im 65.i think i know every neurologist there is to know.1 neurologist wants to take me off dilantin and go to keppra. that lasted 4 days. it was a nightmare and i wont do this. i have a few high liver enzymes. the neurologist sass it can get better in time, but at my age---no way. the 4 days gave me a taste of it. today im more weak in the legs. im thin, active, dont smoke or drink. the drs tell me this shouldnt have happened because i live what they call A CLEAN LIFE. it shouldnt, but it did. now i feel like my life is over. nothing suits me in meds and im still on the dilantin. i cant take this feeling anymore. its almost a year now. it got better for awhile, . now its back. im told it can come and go.i never did this on a computer and i would appreciate it if anyone can send me some repliies to my inbox if they had this type of experience.i have no diabetes and i was not in an accident. i have arthritis. my mom died last june, but im told its not from stress. nobody gets it. i sure dont and i cant get off the dilantin. i dont know where to turn.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
New here, need help
- Thread starter amilie
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
Hi amilie --
I moved your post to give its own thread, so that people can welcome you and respond. Welcome!
When transitioning, the key is to go verrrrrrry slowly in terms of tapering off and/or ramping up (if you're trying a new med). If your current neurologist isn't able to help, don't be afraid to seek out a second opinion. Your quality of life is important, and the docs should be able to help you make positive changes to make things better.
Best,
Nakamova
I moved your post to give its own thread, so that people can welcome you and respond. Welcome!
There are other meds try besides Keppra that may be easier to take. And since you've been seizure-free for so long, it may even be worth trying to come off meds all together. Ask your doctor about these options.i cant get off the dilantin.
When transitioning, the key is to go verrrrrrry slowly in terms of tapering off and/or ramping up (if you're trying a new med). If your current neurologist isn't able to help, don't be afraid to seek out a second opinion. Your quality of life is important, and the docs should be able to help you make positive changes to make things better.
Best,
Nakamova
new here, need help
thank you for your answer. im a nervous wreck. these 4 days are something i cant forget. im so difficult with meds and then something works, so this happens---i really dont want to change meds., but its the neuropathy. if i could get off this entirely, id like that best and then to take nothing., but no dr wants to take that on. i lost count how many neurologists i saw and just running from dr to dr is a stress in itself.1 dr tried lowering the dose from 3 to 2. in 2 hrs i felt a seizure coming and i just took the 3rd pill. on my own.i should have realized too that you cant just drop 1 pill in its entirety. it has to be very slow, but i wonder sometimes where they got their training.i cant imagine that there is not a pill to just control the enzymes.the dr who gave the valium originally is to blame. because i was never told to stop slowly. i never took sedatives before., but to go back is useless. i have to work with what i have now.its unbelieveable how a pill 25 to 30 years ago caused such an upheaval in my life.
thank you for your answer. im a nervous wreck. these 4 days are something i cant forget. im so difficult with meds and then something works, so this happens---i really dont want to change meds., but its the neuropathy. if i could get off this entirely, id like that best and then to take nothing., but no dr wants to take that on. i lost count how many neurologists i saw and just running from dr to dr is a stress in itself.1 dr tried lowering the dose from 3 to 2. in 2 hrs i felt a seizure coming and i just took the 3rd pill. on my own.i should have realized too that you cant just drop 1 pill in its entirety. it has to be very slow, but i wonder sometimes where they got their training.i cant imagine that there is not a pill to just control the enzymes.the dr who gave the valium originally is to blame. because i was never told to stop slowly. i never took sedatives before., but to go back is useless. i have to work with what i have now.its unbelieveable how a pill 25 to 30 years ago caused such an upheaval in my life.
Have you had your Dilantin levels checked?
It sounds like you are on to much.
I say this because I did go toxic on Dilantin when I went on a diet and lost 40 pds.
When Dilantin levels get to high it has the same effect as if you were drunk.
I've had many Dr. and they all tried about all the meds. but Dilantin along with Clonazepam are the only two that give me the best seizure control and at the same time give me a quality of life worth living.
It sounds like you are on to much.
I say this because I did go toxic on Dilantin when I went on a diet and lost 40 pds.
When Dilantin levels get to high it has the same effect as if you were drunk.
I've had many Dr. and they all tried about all the meds. but Dilantin along with Clonazepam are the only two that give me the best seizure control and at the same time give me a quality of life worth living.
how youre all helping me
i get my blood levels checked every 2 months. theyre ok. the dr wants them higher , rather than lower.im so afraid to start something new. im not losing weight. i was always too thin. thats normal for me, but with all the stress im not hungry. ieat because i have to. ihave 2 bleeding ulcers and i cant let my stomach go without food.things were ok. all of a sudden its this neuropathy. thats whats getting to me.i lost my mom to alzeimers last june and ive been under a lot of stress.can you believe---all at once., but its always like that. when 1 thing happens, it all goes.1 neurologist wants to leave things alone. he feels nerves have a way of healing themselves. im seeing my neurologist tues. she always tells me im nervous. how would she be! considering everything its a wonder im writing.i cant go from 1 med to another. i had a hell for 4 days. imn not good with meds. im going to ask her if i can take med to correct the liver enzymes and keep the dilantin. ive seen so many neurologist--i cant taake anymore.the best would be to be taken off the dilantin and no meds, but they wont do it. i had a few seizures, but that was years ago.
i get my blood levels checked every 2 months. theyre ok. the dr wants them higher , rather than lower.im so afraid to start something new. im not losing weight. i was always too thin. thats normal for me, but with all the stress im not hungry. ieat because i have to. ihave 2 bleeding ulcers and i cant let my stomach go without food.things were ok. all of a sudden its this neuropathy. thats whats getting to me.i lost my mom to alzeimers last june and ive been under a lot of stress.can you believe---all at once., but its always like that. when 1 thing happens, it all goes.1 neurologist wants to leave things alone. he feels nerves have a way of healing themselves. im seeing my neurologist tues. she always tells me im nervous. how would she be! considering everything its a wonder im writing.i cant go from 1 med to another. i had a hell for 4 days. imn not good with meds. im going to ask her if i can take med to correct the liver enzymes and keep the dilantin. ive seen so many neurologist--i cant taake anymore.the best would be to be taken off the dilantin and no meds, but they wont do it. i had a few seizures, but that was years ago.
i cant change meds. nothing aagrees with me except dilantin. i just cant take the drs telling me im nervous. lets see if they can do better. like i said in my blog--im always polite, but i finally reached my breaking point. my dr tells me 1 more time im nervous(and she knows ehat happened) thats it.i walk out and go to the other one. he never told me to do anything different. such opposite opinions.in neurology a lot is guesswork too. 1 dr told me that.
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
The doctors can't force you to take meds. If you want to try tapering off the Dilantin, that is your prerogative. They have an obligation to help you do so safely -- very slowly so your brain can adjust at each level, and so you can monitor how you are feeling as you go.the best would be to be taken off the dilantin and no meds, but they wont do it.
will this nightmare ever end!
im going to a different neurologist june 14. i dont care thatv the dr who examined me was the GOD in the field. he put me thru a hell that is unimaginable. this dr im going to never told me to do anything. he never saaid to get off the dilantin . he told me nerves have a wqay of rejunenating by themselves and to have patience. it can take years. he can always go further . its appox. a year now. i trust him more because my surgeon , , who did my hand surgery told me hes the best. my hand surgeon was the best. he would never send me to a bad dr. in fact he said this man is the only one who has any brains at all.hes outspoken and i like that. most drs cover for each other. they will never say a dr is bad. this man did.so my husband and i are going to switch neurologists. sometimes you just outgrow someone.so im waiting till june 14 and ill give him the entire history and hopefully hell help. i even asked the specialist IF THE LIVER IS DAMAGED AS YOU SAY, WHY CAN I TAKE A STATIN AND NOT DILANTIN? THE LIVER IS THE LIVER. THEY BOTH GO THRU. his answer I HAVE NO TIME. i have no time for him either,.only 3 enzymes were testeed . 2 are slightly elevated. he scared me that he had me dying.i took myself off the statins for now after my own research. 1 month will not make a difference in any way witrh this.from what i read he was supposed to order a complete liver panel. theres more than 3 enzymes. the most impt ones were never tested. i cant listen to someone like that.im scared to go off ina way because i havent had a seizure in a no of years, but if i dont need the med im willing to try. i am on it for about 25 years.my husband and i feel were doing right by seeing this dr. from my research and im educated too--im nnot a dr, --i was an english teacher---my husband was an engineer-- we see what a dangerous drug keppra is. its frightening that a drug like this is approved.so manyy people are writing to me about keppra. they had the same nightmare i did.
im going to a different neurologist june 14. i dont care thatv the dr who examined me was the GOD in the field. he put me thru a hell that is unimaginable. this dr im going to never told me to do anything. he never saaid to get off the dilantin . he told me nerves have a wqay of rejunenating by themselves and to have patience. it can take years. he can always go further . its appox. a year now. i trust him more because my surgeon , , who did my hand surgery told me hes the best. my hand surgeon was the best. he would never send me to a bad dr. in fact he said this man is the only one who has any brains at all.hes outspoken and i like that. most drs cover for each other. they will never say a dr is bad. this man did.so my husband and i are going to switch neurologists. sometimes you just outgrow someone.so im waiting till june 14 and ill give him the entire history and hopefully hell help. i even asked the specialist IF THE LIVER IS DAMAGED AS YOU SAY, WHY CAN I TAKE A STATIN AND NOT DILANTIN? THE LIVER IS THE LIVER. THEY BOTH GO THRU. his answer I HAVE NO TIME. i have no time for him either,.only 3 enzymes were testeed . 2 are slightly elevated. he scared me that he had me dying.i took myself off the statins for now after my own research. 1 month will not make a difference in any way witrh this.from what i read he was supposed to order a complete liver panel. theres more than 3 enzymes. the most impt ones were never tested. i cant listen to someone like that.im scared to go off ina way because i havent had a seizure in a no of years, but if i dont need the med im willing to try. i am on it for about 25 years.my husband and i feel were doing right by seeing this dr. from my research and im educated too--im nnot a dr, --i was an english teacher---my husband was an engineer-- we see what a dangerous drug keppra is. its frightening that a drug like this is approved.so manyy people are writing to me about keppra. they had the same nightmare i did.
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
To be fair, for some people Keppra works fine. Everyone responds differently to these meds. I know someone who takes Keppra who has good seizure control and hasn't suffered the nasty side effects. It's often one of the first anti-seizure meds prescribed because you can get up to a working dose very quickly (whereas with something like Lamictal, you have to ramp up very slowly).
i tried lamictal too. that too was a nightmare.the problem with me is--im not allergic per se, but i have a hard time with meds. i know what will work. thats why i always ask questions to drs and pharmacists. 1 time i forgot to ask a dr what he was giving me and it turned out he was giving me a calcium blocker. what a mess, but even that was nothing compared to keppra. lacmactil was close behind.its true that everyone is different. im like my mom was. when she was alive, she too had problems with meds. if something agreed she was afraid to change.im terrified now. i had 4 days like i never had in my life.not only these 2 meds, but a neurologist took me off 1 dilantin too. so it was 2 instead of 3. within 2 hrs i knew what was coming. i took the third dilantin immediately and i headed off a seizure.i didnt have a seizure in years. i should have known myself that when youre on something like this for 25 years , to take 1 whole pill off so fast isnt good.it should have been broken into 4 parts and done slowly.i was so sick from lamictal and keppra that just the thought of it scares me.i never had an experience like it in my life.i honestly dont know if anything will agree except dilantin. a dr tells me its affecting the liver, but doesnt order a liver panel and this was the expert! only 2 out of 3 enzymes were slightly elevated.i dont even know if anything else is wrong in the liver. he wouldnt answer my questions and ive had it with drs like that. im always polite, but its getting to a point where mine and my husbands life stopped for those 4 days. he was terrified i was dying. i felt like i was.my children were scared when they saw me. this is the first time im hearing that some people were ok on keppra.i read such horror stories that people are getting so many seizures in 1 day from it.its amazing that theyre here and writing.my heart goes out to them.i never had more than 1 seizure in a day. i cant imagine what these people must be going thru. im a thin person. 1 seizure takes my life for about 2 or 3 days. i cant even begin to imagine these horrors of more than 1 grand mal seizure. in 1 day.i never had a seizure at night. when i read how people are getting them in their sleep--it is frightening and its all on keppra., but like you say were all differnt. its true.