Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

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/ Epilepsy & Seizures Support Group

Has anyone else had Dilantin do this?

deleted_user
deleted_user
I've been on Dilantin now for about a year and a half. Got put on it January 10'th 2007. Now, I don't think it would kick in this fast, but I could not walk out of the hospital on my own. I was so dizzy I couldn't even stand. That feeling never went away. It is as if I am constantly "drunk" T.V. time is limited because when I watch it the movement on the screen makes everything in my house seem like it is moving even when I am sitting or laying down. Driving is totally out of the question, but even riding as a passenger I have to keep my eyes closed and hold onto something in the van because the same things happen as when I watch t.v. In the vehicle it is worse, almost like it takes my brain a minute to realize that the scenery and cars are stopped and even then things still look wierd. Walking is a challenge sometimes, I need help every now and again to get to the bathroom, and it even does it when people walk past me.

Please do not take this as complaining, or whining just trying to describe it the best I can. I know I am very lucky, there are people out there much worse than I am. The reason why I am asking this is because I have a new neurologist. She is wonderful so far. She thinks these symptoms can be linked to the Dilantin. I was on 800mgs a day and 500mgs a day of Lamictal. I am due to have the baby in 9 days. She took me down from 800mgs a day to 300 and increased my lamictal up to 600 a day. I just don't want to get my hopes up because after the baby is born she is going to take me off of Dilantin and try different medication combinations, I don't want to get my hopes up that this will stop and then still have these symptoms. Just trying to find some input, thankyou for reading :D
deleted_user
deleted_user
Trileptal at 900mg made me dizzy like this... I'n down to 600mg now & the dizzy went away. Good luck with your baby.
deleted_user
deleted_user
im soryr to hear all those things are happening to you my boyfriend has the same syptoms too hoping his dumb doctor will take him off of it cause im expecting a baby in 4 weeks or less maybe when ever baby wants to coem but my babys due dec 23 so yeah and i dont want him to be sick all the tiem i know hes not well but still this makes everything alot worse i wish u the best of luck
deleted_user
deleted_user
IAM ALSO TAKING 300MG A DAY FO DILANTIN AND 500MG A DAY OF LAMICTAL.I CANT SLEEP GOOD AT NIGHT MABYE AROUND 3 TO 4 HOURS A NIGHT,AND I HAVE THIS DAME HEADACHE ALSO,I HAVE BEEN TAKING DILANTIN FOR 23 YEARS! AND ONLY RECENTLY THE NERO ADD LAMICTAL,BUT WHEN I FIRST STARTED DILANTIN I WAS HAVING SOME OFF THE SIDE AFFECTS THAT YOU ARE HAVING NOW.BUT MINE WENT AWAY OR I JUST GOT USED TO IT OVER TIME,P.S GOOD LUCK!
deleted_user
deleted_user
I take dilantin 300 mg a day, at one time they switched me to generic form, big mistake, I also take it at night I was taking it in the morning made me sleepy all the time, made a differenc taking it at night instead, pregancy can really affect the body and meds you take Hormones and all. I hope you find your answers you need, these meds can be very annoying the way they mess with us take care
deleted_user
deleted_user
I was on dilantin about 2 years ago after a grand mal siezure they added it to my zonegran. It did not work well for me. It was the mood changes that were worst of all for me. I know these are common in alot of siezure meds but not like this. my hubby couldn't handle it and I couldn't either.I is so difficult not having controle over our own bodies bot our minds too..that was hard.Least to say that was stopped abrublty. Along with other meds I have tried.Best of luck hun, remeber don't settle with bad side affects we do have many options however there are few and far between that wont put out unborn children at risk as well. Stay safe and take care.
-Rozey
deleted_user
deleted_user
Thankyou for all of your replies. I don't like to know that others are suffering, but it is comforting to know that I am not crazy and it isn't all "in my head". My old neuro had me on 300 mgs in the am and 500 in the pm. It does make you very sleepy and kind of out of it. I hope the different medications make a difference. I am already seeing a small improvement since she lowered it for me. I don't want to feel that way with my daughter here and my new son on the way. It isn't fair to them with mommy always sleepy and not feeling well. I'm glad the symptoms are slightly decreased. Thankyou again for all of your replies!!
deleted_user
deleted_user
I know what your talking about. I was on Dilantin for a long time and I always had that drunk feeling. I finally slowly stopped it and had no seizures for about a year and a half. Unfortunately I got a seizure yesterday and last week. I hope they dont start again
Aust
Aust
Dilantan is awful. Most other drugs had mademe so sick so the nuro tried me on it. Rang him within about 3 days as was getting so sick, then twice more in next two weeks, he just got angry with me, told me not the tablet, only 1 a day, keep taking. 21 days later my DH held me as he got me to the GP. Dr tried the walk a straight line test, caught me as I fell, both Dr and DH held me up to go into his office. Looked into my eyes, said I think your a bit high. Mmmm flying actually. Right, urgent blood tests, want you home and to bed, back here tomorrow, tell receptionest i said so. results were waiting. Liver couldnt del with it and I had a toxiticity of 49.6, followed by hepatitus and took months to get out of my symptom. had to go into the students med study books world wide as now the worst case so fast and have to be aware how bad this drug can be to people. if you can get off it, with the Drs help, run from it as fast as you can.
deleted_user
deleted_user
had another episode with dilantin I am now off, Thank God, I just hope that the new meds work (topemax) I had symptoms that might have been a mini stroke, but I believe it was the dilantin I hope they get you straight, sometimes I think it is all quess work on their part and we are the quiny pigs and we are the ones who suffer in the mean time.
deleted_user
deleted_user
Yes; was on Dilantin for years and in the end, both of my arms got broken at different times with one being due to a seizure. The complications that you describe are similar to what have been in my life for the past few years. Things change due to the changes made with surgery, medications, and the like. Not able to drive now either but after things happen from accidents/seizures, I just want to be able to work in my studio. As long as the mind still works with my hands things will be good. Hope things have gone well with your child! Happy New Year!
Best regards,
Beth
deleted_user
deleted_user
I was taking 400MG of Dilantin for 6yrs and yeah if I was playing Rock Band/Guitar Hero or Driving I would somtimes have this issue and sometimes would even have to throw up because of it. I have many a time pulled over on the road by the way not a cool thing in front of a first date but sometimes what can you do :p. I am now on Zonegran and wish I could go back to Dilantin though because Zonegran is screwing with my mood and my ability to drive and function normally. Plus it is really expensive.
deleted_user
deleted_user
I have been on Dilantin for almost 19 years. When I first used it, after 2 or 3 days, I felt like my head was going to split open. The neurologist said that I could not use the generic form of Dilantin. I needed a name brand from the pharmacy. I got the name brand Dilantin and have not had any problems since. My neurologist said there was too much variation in the generics.
deleted_user
deleted_user
I had a lot of screwy side effects of dilantin including bleeding/sensitive gums, dizziness, and really bad headaches. Turns out I wasn't supposed to be on dilantin in the first place because I have Juvenile Myoclonic Epilepsy and Dilantin and Tegretol cause my kinds of seizures. I got the correct diagnosis (after getting a 2nd opinion) and am on Lamictal now. I don't have any noticeable side effects of this one.
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