Dilantin toxicity

 Hello Everyone,

 Now that you are all done bashing each other or not I would like to say something.

 I have had Epilepsy for most of my life,I am 44 going on 45 years old and have had seizures since I was 8 years old due to a Brain Abscess. I have been on many medications, dilantin,tegretol, mesantoin,myceline,diamox (Acetazolamide) and elavil to start off with.I have tried most of the other medications as well and I agree every person reacts differently to different medications.I also agree that your doctor was right to send you to another neurologist.

I don't believe that Dilantin caused your friends cancer , I think genes have something to do with that as a general rule and I'm very sorry about your friend ,having had several family members with cancer myself.

And for those of you who have had such good results on Dilantin that is great for you, I have been on tegretol myself for over 30 years and am now also on Lyrica as well.It seems to lighten the seizures I have and spread them out.So tegretol is not the monster you make it out to be perhaps it was a matter of bad judgement on the doctors part and your parent and you also have to remember that not much was known about Epilepsy and seizures back then. I also have a VNS and it helps some people and some not,it makes my grand mal seizures lighter than they would have been and if I get to them in time it will sometimes cut them off so it is all a matter of timing I think.

Good Luck to everyone and take care.

 

   Hey Everybody,

 I think it was me that started everything here But, I was just speaking the truth and didn't mean to hurt anybody sorry. We are all different and I'm sorry if I came off too strong about the way I feel and tryed and pass along some information that may help some people.

The VNS I hear does work for some people however it never helped me. Good for you if it does because thats what its for. Whatever helps you be seizure free thats great and I really didn't want to write about the research that I spent hours on because I knew this would happen.

I'm taking 600mg of Trileptal a day and thats the only medication at all and I'm seizure free. I knew there would be somebody out there that would bash Trileptal as well. I thought you could share information in here without somebody thinking that they were being bashed. Most of us have seizure problems in here I think and it was just information I wrote.

Dilantin does cause cancer in some people and if anybody wants some links about the Dilantin just let me know I have about 20 different links about the long term effects.

Sorry if anybody thought that I was bashing them and I hope everybody in here stays seizure free.

  Take Care All,      Jeff

MISTYGIRL,
My VNS will be removed and they will leave the wires in.
Jeff

This is my first time on here. I have been reading what everyone has to say about Dilantin. I had a car accident in Dec. on Christmas Eve, my airbags did NOT deploy, and i ended up hitting my head very hard and was knocked unconscious. I was out for about 30 to 45 min. At the ER i had CT scans, MRI and everything looked fine. So i was released with a concussion and a back sprain. That night in my sleep i had a what was believed to be a 3-5 sec. seizure in my sleep. My sister saw it. Honestly, i didnt think to much of it. about 10 days later, i had just fell asleep and i had a big grand mal seizure and was admitted to the hospital and monitored 24 hours a day for 3 days. I had another ct and mri and an eeg. Everything was normal. Now im on 300mg of Dilantin, i cant drive for 6 months. I have a 6 year old and a 2 year old and live in fear if Im going to have another seizure. Im 28 years old and have always been completely healthy. I have been checking my Dilantin level every 3 weeks. Its gone from 22, 26.7, 16.7 to 8.7. I just had it drawn today, so we'll see what the results are in a few days. I just need some good honest advice. I need to find a way to feel positive, and live my life as it was before the accident. I dont feel like my friends and family understand. Can anyone help me out? I need some understanding about Dilantin, and having a seizure.

Post Edited (jtm09) : 2/19/2009 7:47:35 PM (GMT-7)

Viz,
Thank you so much for your response. I feel a little better. Days I do feel like im just fine, and some days i just want to cry and lay in bed. Adapt! You're right. I just feel like a burden on everybody. My husband is in the military, and is so worried about something happening to me while he's gone. We had to send my 6 year old daughter to stay with her grandma to finish the school year, due to the fact that i cant drive. She is 4 hours away from me, and it is so hard. I cant help to think (EVERYDAY) if my airbags came out, would all this be happening. I feel obsessed with wanting answers. Answers that I will never get. Its just hard to have something happen to you and have a doctor tell you he doesnt know why, and cant make it stop 100%. Its harder to read what everyone has to say about the medication that we all have in common, and see that some people are worse on it and others are doing great. What should i be feeling for me to think i should ask my Neurologists to up my Dilantin. I hear ask your doctor, but i feel better talking to people that are actually on it and going through this. I will use your advice, thank you for not sugar coating anything with me, that is exactly what i need.

PaLady,
Thank you! This is all so new to me, but already i am very faithful to taking my medicine, and try to get as much sleep as i can. Im on top of getting my blood level checked and trying to get it balanced. Thank you

Viz,
I wish you the best as well. Thank you so much, you have really brought my spirits up. I realize that i will have my down days, but i will try my hardest to keep my head up and keep going. It feels good to be able to vent to someone that understands. I will keep you in my prayers, thank you. I hope to keep in contact. Have a good night

Hi Jeff,
Thank you for your reply. My doc thinks that a lot of my memory loss is from the car accident. But I guess we will never know for sure. I do have my foggy moments, I hope that it doesnt make me like i cant remember anything. I have so many wonderful memories, I have two children. After reading this site i have so many questions to ask my doctor. I know eveybody reacts a different way to medicine, but i dont know whether to be scared of Dilantin or have faith in it. My neighbor is on the same medicine you are on, and she was sooooo miserable. She couldnt remember her name, she was so sick. She didnt want anyone around her (including her children). When I saw her like that, I felt so bad for her. I wasnt on any medicine at that time. Hearing you say that you are fine, and feel great is great to hear. This is all so new to me, i fell obsessed with me having a seizure and having to take Dilantin eveyday. I wonder if and when it gonna happen again. I just cant relax! I read what everyone has or is going through, its amazing to me. It could be worse for me. My life changed in an instant, and im just trying to grab ahold of that and live my life. I feel like such a burden. I feel so depressed at times, and all i can do is cry. My daughter is 6, and we had to take her to my mother-in-law's 4 hours away to finish the school year. I cant drive, my husband is in the military, and flys. I have to leave her door closed, cause i hate not seeing her there. Its just hard

Hi everyone, I am new here. I was diagnosed with Epilepsy in 1992 and I was put on Depekene which caused severe panic attacks so I was put on Dilantin. I had such weird sensations and confused states that I was finding it hard to concentrate or pay attention to anything for any length of time. I didn't have control of my seizures and other medications were added and my Dilantin levels increased and still no control. I wasn't aware that my levels needed to be checked but with all the medications, I felt like a medicated zombie. All this time I was trying to make a living as a computer programmer but the issues with trying to stay awake and paying attention to things wasn't easy and the fact that I still didn't have control of my seizures was problematic with employers. I ended up finding out that surgery was an option and I had a temporal lobectomy in 2004 but I stayed on the same medications (Dilantin and tegretal and Lamictal) and the same high dosages. My old seizures were gone but replaced with new seizures which were a lot worse physically and they were happening more often. I had to leave my job to work with my medication and what I found out was that as soon as I stopped taking Dilantin, my seizures stopped. I take one pill of Lamictal to control my seizures but as soon as I add even a small dose of Dilantin, my mind get foggy and I can't concentrate and I have seizures again. I wish my neurologist would have tried something different (instead of just adding to Dilantin) before my brain surgery because I would hate to think that Lamictal could have controlled my seizures before the surgery. I don't know that for sure because I had different seizures before my brain surgery but I have to wonder since Lamictal and Dilantin together produced seizures and Dilantin alone produced seizures but Lamictal alone has left me seizure free. The down side of all of this is that my career is ruined because my former bosses witnessed the confused states and mental fog in between my software development. Memory issues since my brain surgery concern me. Before my surgery I had developed a system to track employees who were out of the office visiting certain company members or suppliers and I did this in a calendar type system. A person could go to a particular day in the calendar and see which employee was out of the office visiting which member or supplier. After my brain surgery, my boss came to me about an adjustment to the system as he wanted to not only track employees out of office visiting members or suppliers but he also wanted this calendar to show any employee not in the office due to sickness, travel, or other types of visits. The problem was that temporarily I had no idea what system he was talking about. A boss doesn't forget that. He wanted a quick answer and I had this confused look on my face as I tried to figure out what system he was talking about. My thought process was ... If such a system exists and if I had developed it then I would have developed it this particular way so the changes that my boss wanted to see would be handled in this particular way and therefore would take a certain amount of time. By the time I went through that thought process, my boss was already out of my office. Even though I am now seizure free with one pill instead of full daily dosages of three medications, I can't get a job because my former boss remembers that incident and even though it was a temporary confusion he was not impressed. By the way, I incorporated the necessary changes to the system but none of this has helped me find a similar job. Epilepsy sucks. This is the healthiest I have felt in 15 years and I can't utilize my skills in any way because my boss remembers that temporary confused state after brain surgery. That sucks and for some reason Dilantin did not work for me alone or in combination. Be well

Sorry for the long novel before but I had a few things I wanted to make clear. I am sure that Dilantin works fine for some people but it didn't work for me. I just wish my neurologist had tried other things since I didn't have seizure control. As an analyst, we never add something new without testing it first. It compounds the problems if you do. The fact that my neurologist (over time) added two medications to my Dilantin really compounded my problem because I still had seizures (and I was a zombie to boot). We have to be our own doctors and I had to test my medication to see what each of the three meds was doing to me and for me. Once that was done, 1 pill of Lamictal controls my seizures. The memory issue since surgery still concerns me but this topic is about Dilantin toxicity. Now I know that I should have had my levels checked ... had I known.

Post Edited (Gumfoot) : 2/23/2009 2:52:17 PM (GMT-7)

 Gumfoot,

 After reading your post there is no way that I'm going to have surgery.

 jtm09,

  I take something for Anxiety because I was so paranoid that for about a month I wouldn't even go outside. Now nothing bothers me at all that I'm taking something for Anxiety. Most people here know how I feel about Dilantin however everybody is different. Also I don't like to give too much advice because it falls apon deaf ears. Or somebody starts to bash me

   No I take Trileptal and 5mg of Valium or more if needed. Before taking Valium I was a mess,

   Jeff