Dilantin toxicity

I have been taking dilantin for 35 years, never had a problem.  The last few days I felt a little odd to the point where I called my regular doctor.  He told me my dilantin level was 46.4 and the normal range was 10 - 20.  This freaked me out a bit.  When I spoke to my Neurologist he asked if I had taken any antibiotics recently, which I have not.  I explained that I have not done anything out of the ordinary.  He told me to reduce my dilantin intake and have the level checked again in 2 weeks.  I am extremely worried that there may be a serious underlying cause for this, such as liver disease.  I am questioning if reducing my dilantin intake from 600mgs per day to 500 is better than stopping altogether for a few days.  Any thoughts or experiences with this would be appreciated.

 

   shadow1100,

  I've been on Dilantin for about 20 years now and about 10 years ago my level got very toxic as my PCP called it.That night I took a generic "Nyquil"and my level sky rocketed within hours.I didn't realize it until I started walking down my hall and then loosing my balance and the next thing I remember is waking up in a puddle of blood.I had fallen on the corner of my brick fireplace and busted my forehead open.Had to crawl to a phone call my mom to come get me and take me to the ER.Took 27 stitches to close me back up.

   According to my neuro.it is the antihistimine that shot my level up so high.I was throwing up for about a day but the doc.said that was the best thing so I could get it out.I had to go have my level check every day for a week.I missed a week of work due to my level being toxic.So yeah everyone that takes Dilantin needs to be VERY CAREFUL about what you take OTC.

My son was on dilantin for 12 yrs and then it stopped working and his seizures went out of control. Now he is on Keppra, Zonegran and Lamictal and is seizure free. All his EEGs are now normal.  My son sees a neurologist who specializes in epilepsy.  I am surprised to read so many of you have been on dilantin so very many years.  It is an older med and there are so many other new ones that work so much better to control seizures.  And if your dr. hasn't told you, you should ask about the dilantin as it causes osteoporosis so you need to take calcium and it can make your gums deteriorate.  It is not a med you should be on for so long, especially when there are so many wonderful new epilepsy meds that work so well. Also, if you do get a cold and a fever your dilantin is metabolized much faster and you may not have enough in your system to control your seizures and you will seize.  I live in a big city where we have the best specialists and this is how I found out about epilepsy meds.  This is only a suggestion but I would check with your drs. about staying on this med for so long. It can really affect your health negativily. Also, my son holds down a respectable teaching job and drives all over and leads a very normal life.

Aurora

You are right Palady, the new meds have their side effects and I wasn't meaning that people should not be taking dilantin.  I just wanted others to be aware of dilantin's side effects and also that if it isn't working there are other things to try.  You probably have a different seizure disorder or pattern than my son.  My son has grand mal, also called tonic clonic seizures, and he has absence seizures. The absence seizures are probably what he had when he was younger and no one noticed because you don't pass out or get spasms.  You only momentarily stare or don't hear what somone is saying and they usually pass in  seconds. His seizures became very out of control and it took a lot of juggling by his neurologist to get the right combination.  And yes, he had a lot of side effects when he first went on his 3 meds and had to take a 3 month leave of absence from his job.  But after a year on the meds he is back to normal and driving and working.  Only problem is that Keppra can make him kind of irritable but we will put up with anything as long as the seizures are controlled.  Thank you for responding and I wish you the best.

Aurora

HI shadow,
Did your level increase to 46 after starting the new dilantin formulation from pfizer?

Flowmaster00,

FYI ~ your information is not completely true.

I've known ppl who have been on dilantin for 20-30+ years with no real probs. other than the normal expected side effects. It is harmless as long as it is carefully monitored for blood level, EEG, liver enzymes, see the dentist every three months to check your gums,etc.

The side effects from long term use are different for everybody.

All AEDs are going to effect you in some way, all AEDs cause "foggyness" and short term memory loss. If not managed, it can also contribute (not cause) osteoperosis.   To couteract this, I just take vitamin "C,D and magnesium suplements" b/c dilantin is known to zap your vitamin C from your bones.

There are cases of ppl who can't take other AEDs b/c they may have a negative effect with other meds that you may be on, IE: In my case, I also have Ulcerative Colitis and Dilantin is (so far) the only AED that will not have a negative chemical reaction with my UC meds.

Also, since I was on dilantin for so long, if I were to change meds, I could risk a seizure ~ worse than before or possible lower brain stem damage.

I'm suprised that UCLA stopped your dilantin "cold turkey". Especially since you were on it for so long. It is documented that you should never quit an AED "cold turkey", you should be weaned off gradually or you could risk a seizure and by law (up here in Canada) have to give up your drivers lisence for up to a year seizure free.

Randy

 

Randy,

I thought the same way you do until I found a doctor that really knows that dilantin is a drug not to be in anybody too long. I've taken 15 different meds and none of them have worked and thats because you need to be off dilantin first. If you have notice they have made a new dilantin. There must be a reason for that. Maybe its the lawsuits?

I'm now more aware of everything now that I'm off dilantin and you people can stay on dilantin until you find out the long term side effects. Also I don't drive anyway,

   Jeff

Grace4me38,

I was taking Dilantin for 26 years all by itself. Dilantin blocks just about any medication and everything you eat messes with your dilantin levels. Dilantin had me walking into walls and gave me some brain damage as well. I switched to trileptal I'm no longer in a fog my thinking is clear even my short term memory is so much better. The first thing I noticed when I got off Dilantin was that everything was so loud. Now I can hear so good ( not that I had bad hearing ) I had to turn all of my phones down.

I did a lot of research on Dilantin and if I were you I'd be looking to switch that drug to another. The best thing you can do is to stay with one drug. Go to google.com and type in Dalantin and you will see what I'm talking about.

Enjoy Your Day,  Jeff

grace4me said...

I am on Dilantin, Lamictal, Klonopin and Ativan to control my seizures and I have been having weird levels with my Dilantin.  My level was 9 one week and I had a bad seizure was taken to the ER and my level was 3 so they gave me IV Dilantin and a week later they took my levels and they were 29.  So they cut me back down and I had my levels taken again today.  No news yet what they are.

I tried to tell my neurologist that my head did not feel right and he told me to go see a psychiatrist.  So I went to my primary care doc who started taking my levels and sent me to a new neurologist.  However, right now no one has any ideas why my levels have started going up and down so weirdly. When I start walking into walls and can not stay awake I know that they are to high.

Grace4me38

PAlady said

"I do have to disagree with Jeff, because of my positive experience as stated, with dilantin for decades with minimal side effects."
PaLady

Jeff,

You say that your mind is clearer and your short term memory is comming back BUT are your seizures under control? Sometimes, you can do more damage to your system by changing meds after long term use. I have no reason to stop taking it at this point in my life ~ "if it's not broke don't fix it".

Randy<!-- Edit -->

Jeff,
Much of what you say may be accurate and relevant - for YOU. Each of us is individual. I'm nearly 60 and have been on dilantin since I was 14. It controlled my seizures very, very well. Fact is, the only time I had additional grand mals were when I was younger and doctors tried to take me off the dilantin. I consider myself fortunate to have lived a highly functional life as far as my epilepsy is concerned. No grand mal seizures since I was 25. And I do regular blood levels, and liver enzyme tests with my neurologists. I drive, have worked full time and run my own business. All of this changed with a bad fall 4 years ago, unrelated to the epilepsy (as I've said). Sorry to be repeating myself but I just think you don't give enough credit to a drug which for at least some of us has been a godsend. And there is NO drug out there without side effects. And the newer the drug, the less is known about long term side effects.

There are trade offs in life. If triletal keeps you seizure free that's GREAT! But you'll find there will eventually be some trade offs for that. But to me it's well worth a trade off of some side effects to be seizure free.

Dilantin giving cancer? Long term dilantin use may - MAY - lead to symptoms that mimic lupus, but that's why regular check-ups are very important. Not everyone should be on it; not everyone should stay on it. But for SOME of us it's fine - and as far as i'm concerned it's great. I just think you're posts may apply to you but can be very misleading for others.

PaLady

Flowmaster,
I'm sorry if you felt I bashed you. That certainly wasn't my intent, but to be honest I felt little bashed myself. You also expressed your opnions pretty strongly.

Anyway, enough said. I see that you're a new member and I apologize if I've discouraged you from participating. I rarely post to this part of the forum, so I hope you'll continue. You meant no harm to me, nor I to you. I hope you keep posting.

PaLady

Hi all,

The debate on Dilantin is very enlighting.  Yes, all of the meds that I am on is for seizure control and nothing works completely.  My primary care doctor is so frustrated with my neurologist that she has sent me to another one.

He has scheduled me to be put in the hospital for four days of continuous monitoring so that he as he said he can find the right medications instead of just keep adding meds that may or may not be harming me.

Grace

PAlady said...
Jeff,
Much of what you say may be accurate and relevant - for YOU. Each of us is individual. I'm nearly 60 and have been on dilantin since I was 14. It controlled my seizures very, very well. Fact is, the only time I had additional grand mals were when I was younger and doctors tried to take me off the dilantin. I consider myself fortunate to have lived a highly functional life as far as my epilepsy is concerned. No grand mal seizures since I was 25. And I do regular blood levels, and liver enzyme tests with my neurologists. I drive, have worked full time and run my own business. All of this changed with a bad fall 4 years ago, unrelated to the epilepsy (as I've said). Sorry to be repeating myself but I just think you don't give enough credit to a drug which for at least some of us has been a godsend. And there is NO drug out there without side effects. And the newer the drug, the less is known about long term side effects.

There are trade offs in life. If triletal keeps you seizure free that's GREAT! But you'll find there will eventually be some trade offs for that. But to me it's well worth a trade off of some side effects to be seizure free.

Dilantin giving cancer? Long term dilantin use may - MAY - lead to symptoms that mimic lupus, but that's why regular check-ups are very important. Not everyone should be on it; not everyone should stay on it. But for SOME of us it's fine - and as far as i'm concerned it's great. I just think you're posts may apply to you but can be very misleading for others.

PaLady

Dilantin causing cancer? come on now, it was probably a fluke case.

You say that triliptal is a form of tegretol, Well let me tell you what tegretol can do:

This is Kelly's Story (my sister)

I have an interesting story about my 44 year old sister who was dx'd with EP when she was 13 yrs old.
At that time she didn't see a specialist, but instead, saw her family doc who over prescribed tegeratol so much that it became toxic in her system and caused brain damage after long term use.

It (the grande mal seizure) was triggered when she got her first menstrual cycle.(puberty)
At that time, my mother took her to the family doc. but instead of getting a second opinion, she let the family doc. over medicate her.
The meds were so powerful that she has never advanced past age 13. Now she's 44 and has never worked a day in her life or played any sports and couldn't even complete high school or have a family because she was constantly in a fog and everything is "TOO STRESSFUL".


Now my sister (Kelly) is so messed up that she barely regognizes me, She tried some voluteer work at the hospital and I happened to be in there one day to visit a friend and when I called out to her she didn't know who I was at first for a few minutes. When she speaks (which is rare) she looks through you. not at you. You have to speak to her like she is a 13 year old or she can't understand. She can't complete a setence without messing it up.

Her gait and co-ordination is so bad that she is always holding on to something and when she walks she always looks like she's going to fall.
She's a walking vegitable and now also walks with a cane. What kind of a life is that.

My mother thinks that Doctors are stupid and just like throw around big words.
Thank god I was dx'd after I had moved out or that might have happened to me.

All this from being over medicated with tegretol.
***And she still has several grand-mal seizures a week.
So this is what can happen if you're not careful and the tegretol goes toxic in you're body. Now she has (and has for several years) permanent brain damage. 

Jeff, as you can see, all AEDs react differently for everybody.

So you can bash dilantin all you like so I can bash triliptol.

Randy