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Dilantin Side Effects

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Posted 3/7/2010 7:13 AM (GMT 0)
hello Steph,

I too like you are having some of the same issues with my husband!  I too like you am doing some research because like your mom my husband has been all of a sudden rushed into the hospital and they tell me that they find anything wrong with him exept for him just having spells! You see, him too hasn't been on medication for about 5 yrs. and when we moved back to L.A. he started to have them reularly. He got put back on dilatin, and his seizures are alot more frequent! Whenever he gets rushed in all the doctors do is up his dose! I've researched and doctors have told me too that to much dilatin can overdose a person and cause the person to seizure more! The problem with dilatin a doctor once told me "with dilatin, it's almost hard to keep a person stabilized because what works for them this month might not exactly work 6months from now" also in my research yes seizures can kill if not kept under control! I'll go back and pull the article up and send it to you if you like!! Well good luck to you in your researching! And as far as your mom goes, I hope that this was some what helpful to her and I'll keep her in my prayers and I wish the both of you the best of luck in this hard journey of ping ponging back and fourth of unanwered information that you are seeking!!

   Your friend,

Kimmie Girl

Posted 3/15/2010 1:55 AM (GMT 0)
Hey guys,

I stumbled across your website today because I have been on dilantin for just 3 weeks now. A little background. I have had 3 gm seizures in my lifetime, once when I was 3, once when I was 13 and once at 31 which was on the 25 of january this year. I hadn't really even thought about seizures until I had one in the middle of big lots. Luckily, I remembered what the symptoms were leading up to a seizure and told my partner that I was going to have a seizure and promptly did. I had in the last year felt the peripheral sensations when playing video games and such but thought nothing of it. Anyhow, the hospital put me on keppra till I could see a neurologist. He put me on 300 mg of dilantin a day. EEG was normal and so was MRI. I am supposed to get results of blood test on monday for my levels. As for side effects there are many I am experiencing in such a short time and I hope they fade away. My sleeping pattern is really messed up. I used to be able to sleep 8-9 hours and still feel tired when I woke up. Now I am 5-6 hours and cannot go back to sleep. I work 3-12 at night and by 8'oclock I am absolutely dead tired and I heat up alot. Additional side effect is some rashes that have appeared on my forearm and abdomen, kinda itchy. Actually, now that I am on anti-seizure medicine I feel more succeptible to em as I am a bit twitchy.
Does this stuff ever go away?
Posted 4/14/2010 9:28 PM (GMT 0)
Hi,

I've been on Dilantin over 31 years. The only side effect I've had is slightly puffy gums and hair growth is faster. The generic dilantin does not work. I've also tried tegretol, lamictal, mycoline, depecote, vimpat. Still have seizures. I just had right temporal lobetocemy surgery 3 weeks ago, It is my only hope to get off meds and return to a normal life. I should have changed doctors 15 years ago.
Posted 9/20/2011 2:06 AM (GMT 0)
does anybody have one of those insensitive indian doctors? supposded to be the best in the world or something because he can reading scans so well. ive had the e.e.g and to no avail it was a waste of time.I personally do not want a M>R>I because no matter what i do not want brain surgery unless its gonna kill me not to have it.

anyways i ve read all the posts and i agree with the most of you about the side effects.I went to the dentist for a filling repair from years ago, and the dentist told me i have gingivitis , but how i brush daily floss and mouthwash like crazy and push it on everyone else too, thats when i remembered reading in the P.D.R about the side effects and the swollen gum photos. im on 300 mg. o dilantin a day it controlls my seziures but im not sure since i dont have them much anymore, maybe i just not having them and taking this stuff for nothing.I have no trust in my doctor since all he does is weigh me and tell me to take this med. for the rest of my life, next visit tells me i might be able to switch?..... my wife just reminded me i had a seizure about 9 months ago and personally think i had it from witdrawl from the dilantin? is it just me or does anybody else notice that everyone on here thats on dilantin cant quite make the type come out right,, i know we can spell and typos are common but i have it bad, i have to go back and read what i typed because its like my hands think different keys are right or something... i didnt used to be this way and i think i have gum overgrowth my wife just told me i have bubbles on my gums when she asked what are you tying. i showed her my gums cus they freak me out lol.

Ive had a ew blood tests but never had them explained to me and i just try to avoid them since i have no insurance and i pay cash for the visits, wich is hard to do since ive had to switch job , i quit the resturaunt jobs after apprenticing my way to the top in nice resturaunts because socially people were just too harsh.... i loved it wheni switched to carpentry but i never told the guys i had seziures and never had one around them. but i know i shouldnt be on the roof since i dont even go near water or hiking alone or any thing now. i never had a sezuire until i was 23 so whats it from they said it was from xanax but i never took it they gave it too me my first e.r trip and the next trip they found it in me. my new doctor just doenst give me any any explanations or anything he just yells it at me YOU HAVE TO TAKE THE MEDICINE, if i tell the nurse anything about paranoia or any weird side effectts she jokes that i need to stay off the drugs............ that made me so mad and my sister is a nurse there but i let it slide and now im thinking of quitting doctors and prescriptions, to find somtehing more homeopathic and if any one knows anything remotly close please help me.

i sympathize with the other sufferrers on here and inspired me to post since there is a clear lack of and disinformation about these drugs on the net. Doctors can be misleading with lack of info and options and somehow get us all sucked into this medecine from 30 years ago with a wicked historold this foruy,although i am sceptical ofnew drugs, i dont how old some of the posts are on here and hope we are all still here and i would like to hear follow up stories. What should i do if i think i might have gum growth side effect beginning
Posted 9/20/2011 2:22 AM (GMT 0)
ok i just a new thought has there a ever been a link to flouride levels added to water and seziures? if you get toxic levels of flouride you can have a seziure.... so why has there not been a study on it? And especially why havent doctors thuoght of it? Ok i thik its almost common kowledge in 2011 that flouride and other agents force fed to us in water and everything made from it is causing new medical problems that humans really didnt have so much before at least not on this scale.Cancer of all types is casued by an event such as contamination from chemicals, it also affects bones. Fact: The FDA does not require bottled water manufacturers to list the fluoride content on the label, but it does require that fluoride additives be listed. In 2006, the FDA approved labeling with the statement, “Drinking fluoridated water may reduce the risk of tooth decay,” if the bottled water contains from 0.6 mg/L to 1.0 mg/L.
The FDA standards of quality state that domestic bottled water with no added fluoride may contain between 1.4 and 2.4 milligrams per liter (mg/L) fluoride, depending on the annual average daily air temperatures at the location where the bottled water is sold. Domestic bottled water with added fluoride can contain between 0.8 and 1.7 mg/L fluoride, depending on the annual average daily air temperatures where the bottled water is sold. Imported bottled water with no added fluoride may not contain more than 1.4 mg/L fluoride, and imported bottled water with added fluoride may not contain more than 0.8 mg/L fluoride. so need to research if flouride can caurse seziures along with cancers and other disease, go ahead cus you will find it and why is it added? thoughts?
Posted 9/30/2011 5:13 PM (GMT 0)
I have been on Dilantin for about 20 years (400 mg) for petit mal. Was rushed to hospital earlier this week - shaking uncontrollably, collapased on hospital floor, walk like I'm drunk. Discovered my levels were 120 - have been going for blood work every day since to have them checked. Down to 73 today - was told that I had Dilantin toxicity and to cut my dose in half. Still walk "drunk", and feel like I'm quivery or vibrating. Has anyone experienced this and if so, how long until this "toxicity" gets out of my system?
Thank you.
Posted 2/23/2012 3:26 AM (GMT 0)
My father was put on Dilantin about a month ago for seizures that were caused by a previous stroke. Since then, we have been to the ER SEVERAL times. The last 2 times, which were within 24 hours of each other, his dilantin levels were at 22. He was extremely confused, couldn't focus, and kept looking at me with a blank stare when I asked him a question. He has been in the hospital for almost a week now, and the doctors just kept telling me his electrolites were off balance and thats what was causing the confusion. I highly doubted this and kept asking for more tests, a neuro consult, ANYTHING! They finally agreed to a neuro consult today after getting his electrolites back to normal and (guess what) the altered mental state did not improve. Within 5 minutes of talking to my dad the neurologist was able to solve the mystery. He called it the "Dilantin Effect", the drug had an adverse reaction to the other meds he was taking, which caused the electrolites to drop below normal levels. The confusion spells he was experiencing were in fact mini seizures. So now my father is FINALLY on a new anti-seizure med (forgot the name) and hopefully will be back to his normal self soon. Just a heads up to anyone taking the drug and experiencing the same problems, DEMAND a neuro consult if you must. The regular doctors were talking to me like I was the crazy one, but 6 ER trips in 2 months= something is wrong. Period.
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