Dilantin side effects

[rong]

I have been taking dilantin for 25 years. For the past 2 years I have been having side effects that were getting progressively worse. My dilantin blood level had gone toxic but is now back to normal. However, the most serious side effects-neuropathy & concentration issues- are taking their time going away. My doctor wants me to wait 6 months before considering changing meds. Has anyone had a similar experience with dilantin?

My seizures are under control. I've gone from 500 mg to 400 mg per day. Weight loss may explain the toxic level issue.

[Meetz1064]

I took that lovely med for years. 35 years to be exact.

I had the toxic issues, but no one knew why. I didn't lose any weight. It got so bad that my boss had to literally carry me into a doctor's office from where I was taken by ambulance to the hospital.

I still have problems with my gums because of that med. They're not swollen over, but Ii still have bleeding when I brush even now from the med. I've asked the dentist about it, and after going through some very careful exams, he says it IS because of the Dilantin.

As for the neuropathy and concentration--yes, I have those problems, too. And have had them for years. It's driving my neurologist nuts trying to get my neuropathy dealt with.

Did your doctor say WHY they want you to wait 6 months? If you're having problems with toxicity, you really need to get off the Dilantin.

I wish you luck. Take care.

Meetz

[KelVarQ]

I too was on Dilantin for quite a few years (not as much as you or Meetz, maybe 5 years) and I too went toxic. However, I went toxic because my neurologist had me on way too much as well as the generic. The nurse at my job (at the time) would take my levels and came running to my office to tell me that my levels were way out of control and I needed to call the doctor immediately. I ended up calling a new neurologist. Some of the symptoms: I was practically catatonic, perspiring to the point where I literally smelled and forget about concentration! I recall it did take some time to get myself back to normal even though I immediately switched to (I believe) Tegretol. However, I think Meetz is right in that you shouldn't wait to come off if you're having problems. Why would your neurologist make you wait since toxic levels could be dangerous. I remember the nurse at my job was panicked and said I was overdosing on the drug, which I wasn't shocked because I was literally a walking disaster and truly was struggling to keep my eyes open. I remember that horrible time simply because I STUNK so bad and had no clue what was going on since it was when I first got E and didn't know about toxic levels. Apparently the smell and sweat is because the poison is coming out your pores. I remember waking up with a pool of sweat on my chest and thinking, "Wow, I never sweat and I really smell!" As far as concentration and/or cognitive function I always had that problem with Dilantin but not nearly as bad as when I went toxic. I really don't think your neurologist should wait and I'm perplexed as to why he would have you wait.

[Nakamova]

I was only on Dilantin for a few years, but I started getting the gum overgrowth, and my neurologist also thought I was losing sensation in my feet (though I'm not so sure about that). But Dilantin has a 2-week half-life, there's no particular reason why you should wait 6 months to go off of it.

[rong]

I'm having more blood work done this week. When I check in with my neurologist I'm going to reluctantly request a change. I'm doing so good (seizure free) taking dilantin, I'm really concerned.

The neuropathy is bothersome, but it seems to be getting a little better. It's
my memory that concerns me the most. I can't remember names, I forget how to spell and I find myself reading things three times before I get the message. To make matters worse, I'm in a very technical business.

I know I have it easy compared to most people with E. I just need to get my mind back.

Thanks for your input
rong

[Bernard]

Long term effects of dilantin

[PhylisFeinerJohnson]

I was on Diantin and the side efects were that my hair fell out, I got galloping gum rot ans then I went into a coma. Even when I wasn't comatose, I felt like I had no brain. Slow to catch on was an understatment. I felt like a walking zombie.