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Dilantin Takes its Toll

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Thornton, COFor John Canacari, Dilantin is a blessing and a curse. Although it has helped to control his epileptic seizures, the effects of Dilantin have taken its toll over the years and his health has deteriorated.

"I've been taking Dilantin since I was 19 and now I'm 46," says Canacari. "When I first started taking Dilantin, I threw up just about daily and it took about two months to get used to it.

"Although Dilantin just about stopped my seizures, it's a rough drug on my body, especially my liver, and it has caused major gum disease. My dental health is a huge problem, especially my gums, which has caused most of my teeth to fall out - I only have seven teeth left. But I am so afraid to put a partial denture into my mouth because of my seizures - I could choke to death. My dentist told me that my bleeding gums and recession is a common side effect from Dilantin and he has treated several patients who are on Dilantin for gum disease.

One thing that isn't discussed or out in the open so much is the adverse effects of mental wellness that Dilantin has caused. I have been having a really hard time with my mental health. I suffer from depression big time - when I was about 23 years old, I locked myself in my room for two years and only came out for meals or when I went to the bathroom. Dilantin was the only drug I was on at that time. And I never depression before taking it.

I have recently heard that Dilantin can cause mental diminishment so I was given more drugs - the drug companies have tried to correct a drug with a drug. Finally I stopped taking some of the other drugs I was prescribed to correct problems with Dilantin, but it's a very complex situation.

I think I will be taking Dilantin for the rest of my life. It doesn't completely control my seizures but I'm still alive! I have small seizures - trembling - that can't be controlled. One time when I had an EEG, the doctors recorded 36 seizures within a half hour.

The first drug on the market to control epileptic seizures was Phenobarbital. Then Dilantin came along and it has dominated the market for the past 20 years. But why can't the drug companies come up with a safer drug? I think they don't need to because Dilantin is selling so well. Doctors are out there pushing this drug and they don't seem to care about these side effects, especially the ones that aren't visible - my mental health has made my life a living hell."

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READER COMMENTS

Posted by

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Dilantin has caused me so much embarrassement to the point that my husband doesn't want to even kiss me and especially not me to kiss him, he looks at me and says you need your mouth fixed. I've cried before because he doesn't want to take a picture with me because of my teeth and swollen gums, there's certain foods I can eat I can barely even chew or bite into something as small as a cookie or piece of gum it hurts so bad. When I smile I have to cover my mouth so the person I'm talking to won't see my teeth, whenever someone looks at me when we're talking they are constantly turning there nose up at me cause that's how bad my mouth looks, All of my teeth or loose, one fell out of my mouth while I was talking, I've never been so embarrassed in my life. I can't chew a piece of bread, when I bite into something there's blood on it from my mouth, Everytime I spit it's blood mixed in, there is so much soreness in my face and under my neck from my gums being swollen so bad. My head hurts like crazy. I really can't afford any dental work but I know that I never had this problem til I started taking the Dilantin, I had a brother who was taking them but as it caused his gums to swell and bleed he discontinued to use the Dilantin, I'm to afraid to do that in fear of having a bad seizure, sometimes when my gums swell really bad to where I can't talk I'll stop taking the meds till my gums go down. I'm just now knowing about the side effects of Dilantin and how bad it has damaged my gums and teeth. Some days it feels like something is stuck in my gums and when I try to pick it out all it does is bleed. PLEASE HELP ME NOW ON WHAT I NEED TO DO, IM SITTING HERE NOW IN SEVERE PAIN PLEASE HELP ME. I CAN BE REACHED AT423) 485-xxxx ROOM 337 I HAVE A CELL ITS 616-xxxx PLEASE HELP

Posted by

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I was given Dilantin when I was around 12. I took it for only around two years. I had my first rotten teeth at 18 and had four crowns in the front. Now I am 59 and I just learned about the warnings regarding Dilantin. I think it is extremely unfair that I had no choice to be given a drug with such terrible side-effects. Now I suffer with teeth problems and I find that there are people who knew and concealed evidence? Not fair, and I have no money to fix my teeth. Someone should be held responsible.

Posted by

on
I took Dilantin and Phenobarbital for most of my child hood until early teens to control seizures. Have not taken since, but have terrible discoloration and gum disease to this day due to these meds. I am 57 now and still struggle with my gums and teeth.

Posted by

on
I started taking Dilantin when I was 10. It helped with seizures for about 10 years. Not sure why, but the seizures stopped totally when I stopped taking the drug. My reasoning skills were improved too when I quit. Now for the last 30 some years, my problems with my teeth have been bad. I am down to just having a few teeth left in my head. My dentist finally asked me about any drugs I took when I was young. When I told him about the Dilantin, he said that is why I have always had dental problems. All my back teeth have been gone for years. Now my fronts are having problems. I was never told this drug would effect me for life. Now i am looking at 30k for dentures. This drug is bad. I cant believe they never told us about this. Brian

Posted by

on
I began taking phenobarbital in 1975 and it controlled things well for many years. Dilantin, which has been around for over 100 years, is a common choice for many. Over the past 41.5+ years I've tried most all of the medications and found that Dilantin does not interact well with many meds. A number of medications increase the Dilantin level and increase side effects. Toxicity can happen easily. Compounding effects are a big problem. Unfortunately, the U.S. is always trailing European health care, pharmaceuticals here charge many times more than in other countries, and congress supports the status quo, which big business wants. It's a sad situation. You would never hear of a congressman facing chemically-induced gum problems like the common person has to deal with.

Posted by

on
I have been taking Dilantin since 2006 and in those ten years I have also suffered tooth loss! It has affected many aspects of my life. From social situations, relationships, and most depressingly employment! I go on interviews to jobs where I know that I am qualified for, they see she condition of my teeth and I never get a return call! It has caused me severe anxiety, depression and even suicidal tendencies! How can one afford to pay for the extremely high cost of dental work if they can't even get employment because of the appearance of their smile! I had gorgeous teeth before I began taking Dylantin. Now I am so ashamed of my appearance, I don't even want to leave the house for fear of coming in contact with a people I have to speak to and being embarrassed by my appearance! I have suffered so long with this, I just don't know what to do anymore! Is there anyone helping people like me get their smiles and their lives back?

Posted by

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I took Dilantin three times a day for about 15 years for grand mal seizures/epilepsy. I have had every tooth in my mouth filed and or crowned due to rapid decay and breakage. Mind you, I have been extremely careful with my dental routine all these years. I am now replacing many of the crowned teeth with implants. The actual root on my teeth fracture too, which I am told is not common. I am facing a 20K dental bill in the next 6 months and have already invested at least that much in the past 15 years. More than one dentist has told me my dental problems probably stem from taking Dilantin.

Posted by

on
I was on Dilantin from age 10 till 30 . I got off it because it destroyed my gums. I have beautiful teeth but bad gums thanks to Dilantin. Im 40 now and I dont even want to leave my house Im so embarrassed of my gums. It has destroyed my life. My parents were never told it would do this. My dentist told me to get off it. I hope if your a parent and you read this and your child is on dilantin please get your child off it. Dont destroy your child's smile. People do judge you and look down on you if you have bad teeth. Thanks so much Dilantin for ruining my life. And costing me a lot of pain and money when I eventually have to get teeth implanted in due to the damage. You have literally destroyed any self esteem I had.

Posted by

on
The same thing happened to me was taking Dilantin since diagnosed due seizures back in 2002? Now on keppra which was changed maybe back in 2006? My memory is foggy most times but anyway all my teeth fell out except for my bottom 8 the rest have broken off in my gums I've always worked in medical field and attended college as a adult but having no teeth or broken teeth has damaged my self esteem but I continue to go on cause I still must enjoy life but it's hard to not think that you are taking to clients everyday and wondering if they are saying dang this girl is pretty but her teeth ate horrible please can someone help upset Dilantin user

Posted by

on
Extensive dental issues due to taking Dilantin for years.
Currently not on Dilantin but dental problem(s) commenced while taking.
Need to know of any financial settlements in force to pay for implants made necessary by Dilantin.

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