Dilantin toxicity

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Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 1/29/2009 5:53 PM (GMT -6)   

 Randy,

 Let me tell you something I shut up about Dilantin and if you did some research about Dilantin you would see that I'm right. You don't have to listen to a word I say. I am taking 600mg of Triletal a day and thats it -- I'm seizure free. I havn't been seizure free in 20 years. How many people out there can tell me that they are only taking that little of medication and are seizure free?

Thats only a starter dose for Trileptal. It didn't need to be changed because I now have 0 seizures a day. Thats something new to me and I'm sorry about your sister.

If you would read I shut up about Dilantin. If you want me to stop writing here I will.

 

  Jeff


MISTYGIRL
Regular Member


Date Joined Sep 2008
Total Posts : 27
   Posted 1/29/2009 7:59 PM (GMT -6)   

 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.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/29/2009 9:56 PM (GMT -6)   
I really do want to clarify I never intended to bash anyone and definitely don't think any medication is a monster. I think anything that helps a person be seizure free, or as close as possible, is the right thing for that person. I'm sure if I was young and just having my epilepsy diagnosed that dilantin would not be the first drug of choice, but it's also true when a medication has worked for me for decades I see no reason to change it. And I've discussed this with my neurologist off and on over the years and he's in agreement, although he would chancge me if I wanted. But that in itself is a scary thought because there's no guarantee I wouldn't have a seizure while changing meds.,and it might take awhile to find a med. that controlled my seizures as well as dilantin.

This is way too individual an area to say one way is "the" way. Whatever works. So please, I don't think any other meds or VNS or surgery or anything are bad things. I was simply responding to initial comments about dilantin toxicity, which was the topic of this thread. And anyone on it certainly needs to have regular blood levels checked.

Good luck to everyone in controlling your seizures!

PaLady

Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 1/30/2009 11:02 AM (GMT -6)   

 

   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
Regular Member


Date Joined Sep 2008
Total Posts : 27
   Posted 1/31/2009 8:10 AM (GMT -6)   
Good Morning again everyone,
I realize that no one really wanted to bash anyone but it seemed to be getting a little out of control there and I just wanted to get your attention. I know that every medication works different for everyone and maybe monster was the wrong word to use and it is true about not fixing it if it is not broken. I have tried trileptil recently but unfortuneately I had side effects and had to wean myself back on Tegretol and you are right weaning yourself off and then back on is a little scary because I also had some Grand Mal seizure while going on the Trileptil.Oh and Jeff the VNS is not removed I believe all they do is unhook the leads so you might want to ask your nuerologist about that.
I hope none of you stops writing on this forum because I think that it is a good place.
Good Luck to everyone.
MistyGirl

Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 1/31/2009 10:06 AM (GMT -6)   
MISTYGIRL,
My VNS will be removed and they will leave the wires in.
Jeff

MISTYGIRL
Regular Member


Date Joined Sep 2008
Total Posts : 27
   Posted 2/1/2009 1:45 PM (GMT -6)   
Jeff,
Thank you, I thought it was the other way around.
MistyGirl

jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/19/2009 8:29 PM (GMT -6)   
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
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/20/2009 10:22 PM (GMT -6)   
Hi
I just joined. Jt, you caused me to respond. I can understand. I fell in a gym working out in the 80's and was knocked out and ten years later I had my first full blown seizure. I woke up on the floor with my tongue feeling like raw hamburger meat. My Dr. did nothing and just shrugged it off. about 6 years or so later I had my second one. Exact same thing. This time I to the ER. I was sent to a Neurologist (sp?) and was put on Dilantin. I now take 800 mg a day. That is what I need to keep my levels right. I am not going to sugar coat it for you. Life does change but you have to adapt. It is not horrible. Though at times you may feel like you are losing you mind. You almost have to laugh at it sometimes. After a while you learn to live with it. You know when you are going to have a "dilantin day" and just get through it. I was put on a different med (I cannot remember the name) one time and within 3 days I almost had a full blown seizure while driving. The dilantin works better for me. Not to go on and on but talking about laughing at yourself. - I went to a friends house and we rented a movie, it was Dodge Ball, I watched the entire movie and at the very end I realized I saw it at the theater! But while I was watching it, everything was new. I understand what you are going through. My friends have not walked in my shoes and neither have yours. We have to learn not to get frustrated, sometimes think a little harder, go a little slower, but you will make it through. Oh, and the 6 month no driving thing sucked. Take care and I hope this helped at least some.

Post Edited (Viz) : 2/20/2009 9:25:05 PM (GMT-7)


jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/20/2009 11:26 PM (GMT -6)   
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
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/20/2009 11:45 PM (GMT -6)   
Jtm,
Whether to change your dilantin dose should be dependent on if your level is in the therapeutic range, and if it's helping to control your seizures. You've probably read my posts on this thread, but what I want to say to you is that I only started posting to Healing Well on the Chronic Pain forum because in my late 50's I took a bad fall, which results in back problems/ leg pain, etc. and it had NOTHING to do with my epilepsy. That was diagnosed when was 14. I've only had 3 grand mal seizures in my life, two of which were prior to diagnosis and medication. I haven't had one since I was 25 and I'm almost 60. I would never be posting here were it not for the Chronic Pain. I just pop over on the epilepsy thread every now and then. The majority of people with seizure disorders are out living full lives, driving, etc. When I was in my teens and all of this was first diagnosed, I had to wait 2 years for a license. But the laws were different then. Yes, that's an inconvenience, but there are many more medications to try, plus other procedures, to minimize or completely control seizures. The people that post here, just like those who post on the chronic pain forum, are those whose problems haven't been solved, so it's a distorted picture. Have hope and faith for the future, but it will be important to work closely with your doctor, find a good neurologist (an epileptologist if possible), and follow up on blood level tests, etc. In all likelihood it won't be this way forever.

I had a full time teaching job - in a college - a tenured professor for 12 years. I doubt anyone there even knew about my epilepsy because I never told them. I never needed to. But I did always need to take my meds faithfully, and watch the amount of sleep I got.

Take care,

PaLady

jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/20/2009 11:59 PM (GMT -6)   
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
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/21/2009 6:26 PM (GMT -6)   
Hey JT
I wish you all the best and my heart goes out to you. It is amazing what people go through everyday and no one has a clue. You are going to be just fine. We have an illness. We will survive. I have wondered why God allowed this to happen to me. I guess I needed something to offset my incredible good looks - lol. Just take care of yourself, eat right, sleep enough, cry if you feel like it, exercise when you can and above all else live!
God Bless

jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/21/2009 9:53 PM (GMT -6)   
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

Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 2/22/2009 1:09 PM (GMT -6)   

 

  Jtm,

 Everything will be ok I was on Dilantin for 26 years and most days I was in a fog. After being on Dilantin for that long I could no longer read or remember hardly anything. The good thing was that I could watch movies that I have seen so many times because I couldn't remember that I have seen them. So I know what you are talking about when it comes to movies. I'm now taking Trileptal and can remember just about everything. I now am more aware of everything going on around me which I had to get used to. You will get used to it just give it some time.

Take care,

Jeff


jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/22/2009 3:48 PM (GMT -6)   
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

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/22/2009 4:44 PM (GMT -6)   
Jtm,
It may be important to know that people with epilepsy have higher rates of depression. The two are linked through brain chemistry. I knew I had a low level depression a lot of my life, but never wanted to take meds for it. I hated having to be dependent on even one medication, but I had no choice about the dilantin (or some anti-epileptic). Since dealing with chronic pain, however, (which also increases depression) I've got on an anti-depressant and am glad I've finally done that. You may want to discuss this with your neurologist. And talking with a counselor or therapist may help you unburden some of your fears and grieve the losses you have from the accident.

Because of your head trauma you're right, you may not be able to precisely pinpoint what's causing what. Maybe your doctor will - depending on tests and what they show about areas of the brain.

What I also learned many, many years ago were deep relaxation exercises. They're often taught for a variety of stress management situations. But even though I couldn't stop initial seizure activity (I still get some breakthrough jerking), I have learned that calming myself via relaxation strategies can stop the activity from progressing. Anything that helps you learn to relax - yoga, meditation, etc. will help you manage the anxiety that goes with a seizure disorder. Over time, you'll get to feel out your own body, and that will be your best teacher, but this will take a little time. I have become very aware of body sensations over the years because of the epilepsy. Unfortunately, it also I think now makes me more keenly aware of my chronic pain.

PaLady

Gumfoot
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/23/2009 2:42 AM (GMT -6)   
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

Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 2/23/2009 11:06 AM (GMT -6)   

Gumfoot,

 I heard from a doctor years ago that Dilantin does cause seizures but didn't really listen to him. I have tryed 16 different medications for seizures and they didn't work all with Dilantin. I went to UCLA for a work up for brain surgery and they took me off Dilantin cold turkey. Needless to say my seizures stopped. I was on no seizure medication for 4 days and didn't have 1 seizure. They put me back on Dilantin before leaving the hospital and the seizures started again. I went to my neurologist and ask him to put me on Lamictal and take me off Dilantin. Now I'm seizure free and have been since being off Dilantin. Dilantin had me in a fog for so many years that I didn't even know I was until I stopped taking it after 26 years. So I know how you feel when it comes to that and over the time I was on it I don't remember much.

Take care all,

Jeff


Gumfoot
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/23/2009 2:40 PM (GMT -6)   
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)


jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/23/2009 7:10 PM (GMT -6)   
Since this is all so new to me, i wonder if anyone can tell me what is normal taking Dilantin, and what isnt normal. What are things that i should be aware of that i should look out for that arent normal that i should talk with me doc? Im so paranoid, my husband is so afraid of leaving me alone with our children. I havent had any seizures since Jan. 5. That was my first one. Im taking 300mg of Dilantin. I want to go on with my life. My husband is making it hard. He is living in fear, and its like if i dont and i try and live, then im being selfish. I hear different things about different meds and i just want the best one. I know everybody does. Ive takin Lamictal before, but it was for anxiety. But it made me angry instead. It scares me to hear that Dilantin causes seizures

Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 2/23/2009 7:57 PM (GMT -6)   

 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


jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/23/2009 8:06 PM (GMT -6)   
So you take Lamictal and Trileptal? I just want advice from anyone that can give it to me. i have no desire to hear bashing. We're all adults, everybody bodies are different.

Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 2/23/2009 8:29 PM (GMT -6)   

 

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

   Jeff


jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/23/2009 9:48 PM (GMT -6)   
Oh, I read that you wrote Gumfoot that you asked you doc to take you off the Dilantin and put you on Lamictal. My confusion. Im glad you're better
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