I've been on dilantin for 28 years. One of the things that I've learned over the years is that any over the counter meds for colds or flu containing ANTIHISTIMINE should not be taken as it can cause dilantin TOXISITY.
Most Doctors don't tell you that unless you ask about it. The FDA should ensure that this information is printed on the liturature that comes with each perscription.
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.
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.
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.
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,
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.
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
Post Edited (PAlady) : 1/27/2009 9:30:12 PM (GMT-7)
"I do have to disagree with Jeff, because of my positive experience as stated, with dilantin for decades with minimal side effects."PaLady
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 -->
Everybody out there I used to have 700-850 seizures a year when I was taking Dilantin. I have tried 15 different medications however I was still taking Dilantin. I went to UCLA and they told me nothing will work if you are on Dilantin. So they took me off Dilantin cold turkey. Yes I said cold turkey and put me on Triletal and havn't had 1 seizure yet. Also you don't know what side effects a medication is doing to you until your off them.
You can all disagree with me if you want But, I've done hours of research and found out most doctors have no clue upon what they are doing. I even have a VNS implant which has done nothing for me. These doctors push these VNS implants and drugs because of the kickbacks they get. My VNS needs to be taken out -- more money for these doctors.
Just ask your pharmacist how safe Dilantin is. They may tell you the truth mine did after I stopped taking Dilantin. Dilantin is an old and outdated drug that causes so many long term side effects that you don't know you even have until its too late.
A doctor a USC gave me Klonopin for seizures in my sleep and it did nothing for me. I told the doctor this. The doctor then told me that they didn't think it would work. They give you these drugs because of the kick backs from the drug company.
I was taking Dilantin for 26 years and have had epilpsy for 33 years so I've been around. I started doing really heavy research last year and gee now I'm seizure free and all I'm taking is Trileptal.
Years ago a doctor told me Dilantin also causes seizures -- I thought he was crazy. Well after doing some research I found a doctors report that did say that Dilantin can cause seizures. I don't work so I have hours to research drugs.
Dilantin gave one of my friends cancer. After 30 years yes dilantin did this and he passed away. That kind of thing makes you wake up and see what Dilantin can do. Nothing was broken but it fixed him. Jeff
Your not the only one who feels that way so its no big deal. I've been treated as if I were nothing most of my life. You sound like a very nice Lady and the last thing I would do is bash you. I'm not the type of person that would do so.
Sorry if you felt that I was attacking you I just try and help people and thats it. But there is always somebody out there that can find something wrong with what I do even if its right.
This doesn't mean you no harm meant sorry,
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.
I was put in the hospital at UCLA for a work-up on brain surgery. They did an MRI and a video eeg. I was on Dilantin and UCLA seen the damage Dilantin it did to my brain and took me off Dilantin cold turkey -- I did ask why. They told me Dilantin tends to do damage your brain and doesn't work well with other meds.
They put me on Trileptal now I'm seizure free. I did go to USC for years and they did conflict with my primary doctor. So I know how you feel when it comes to that.
Needless to say I did pick my primary doctor over USC because I felt USC was causing all of the problems and wouldn't listen to me.
I think your doing the right thing and good luck to you,