Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
I'm scared, Dilantin is killing me!
Sun, 01/09/2005 - 03:01I have TLEs and Generalized sz's. I sz every day at least with drops, absences and jerks and then I have the odd CP or Jamais Vu or t/c and other things thrown in here and there. I have nocturnals which right now seem to be complex partials where I get out of bed wondering around trying to find my mother, who is deceased but I've also wondered around continually running into a wall trying to find a bathroom. I've even gone outside several times (I'm at least getting my exercise even tho I'm asleep!). One of my big problems is that I'm unable to take anything more than Dilantin with Clonopin which makes it more effective. I can take Keppra but it doesn't help me. All other AEDs give me horrid side effects. The new thought now is that this might be because I can't take other AEDs with Dilantin so an effort was just made in the hospital to get me off Dilantin, so I could once again try another AED and as terrified as I am to go through the wretched side effects I have with another AED, I was up for it. During this attempt to get me off Dilantin I went status for a long period of time. Wound up intubated, unconscious for quite awhile and the decision was made to send me home. I have bronchitis right now too and my epileptologist felt as touchy as my body seems to be, he wants that cured first, which is seemingly hard to do, and we'll try again. This time I'm going to slowly taper off Dilantin instead of cold cocking me off. I have been cold cocked off Dilantin before and felt wretched but didn't go status and when I was just in the hospital I had an IV drip of sedatives to try and stop that from occurring, yet it did.
NOW this is what irritates me to no end. I've had this for 6 years. Actually I've probably had it all of my life, I know for sure since I was 7 as my mother had me treated for 10 months but insisted my doctor call it "hyperkinicity" aka ADHD and not epilepsy. I believe she was afraid of what that diagnosis could do to me prejudicially during that period of time (the 50's) but the notes state I had generalized epilepsy. I do remember taking phenobarbitol, feeling sleepy but also getting rid of the weird feelings I had had all of my life. Then I was taken off. Had odd sensations, lost blocks of time and other things all of my life but 6 years ago exploded into full blown epilepsy I couldn't ignore. I'm now on disability but I waited a long time to apply hoping to be able to work. In my profession, or in any job I have found out, employers want me conscious at all times! Can't blame them, and I'm considered by any employer a liability risk. ALSO, I haven't been allowed to volunteer either so my home - has started feeling like a prison.
Anyway, I've been then primarily on Dilantin and Clonopin for 6 years after trying many other AEDs with disastrous side effects. This is what really PO's me off. Why don't these blasted neurologists tell you things like long term effects of these poisons? When I was first put on both of these drugs my sz's stopped just like that for 5 months. I was given a quinolone antibioitic that cancels Dilantin, which it did, and I've been out of control since then - about 5.5 years ago. But at no time did anyone ever tell me, and admittedly I didn't read about it for myself but took someone's word for it that Dilantin is an old thus safe drug (my A**). No one ever told me that Dilantin shouldn't be used for long term use. That's the latest news on Dilantin I've heard but how "latest" I don't know. I read here someone took it for 40 years? Good Grief! I know we all have our own individual reactions. I read someone takes Depakote or Neurontin especially and do just fine and I'm in a near coma. I was a lunatic on phenobarbitol and on and on so I'm stuck on Dilantin and I became very insistent about no one changing me off of it as we changed communities twice, doctors several times, and I have been adamant not being changed off of Dilantin because of the side effect hell I went through for 2 years while neuros tried me on different things. No one though told me Dilantin long term can be dangerous.
Over 2 years ago I think my Dilantin levels were always in the at least slightly toxic range but it seemed my sz's were a little better too so it was felt that was therapeutic, left that way. Since then my levels are booming, huge, as my epileptologist states "not acceptable" but even now on a very low dose, not even a therapeutic dose I'm toxic but I have to take something for now, and Dilantin is it.
But this long term use, long term toxicity? Has shot my liver enzymes way up and nothing is bringing them down. I now have peripheral neuropathy in both of my feet from the Dilantin and I'm not wild about loosing my feet! And this week I find out I have pancreatitis, which is a dangerous inflammation/infection of the pancreas and that also is attributable to the Dilantin. I'm supposed to be hospitalized for it and right now I'm refusing. I had this about 1.5 years ago too. I'm an RN. I had a pic line installed, a long term type of IV line, and hung my own antibiotics at home, gave myself my own insulin and got over it in about 6 weeks but no one is allowing me to do that now. Which is infuriating since I did it successfully once before. All of that on top of my memory shot to shit from being on Dilantin which is the all time memory robber.
I feel so guilty about telling any of my family I have yet another problem. One of my daughters and my husband have been my primary supporters. As in another thread I read, a lot of my children and other "friends" and family have run like rabbits terrified I guess I'll have a seizure in front of them (don't you feel like with people like this telling them - how can they be so sure what they're health future is and if they get something devastating do they want YOU to be around and be supportive or should you take off too?) My husband has been there but he's had an obvious grudge, frustration, anger about this and I think I've hit the wall with his attitude and am probably divorcing him although I really can't live alone but I'm working or trying to work those kinks out but how can I when I keep getting one thing after the other?
Why am I posting? I'm just depressed. As bad as I have this I have fought hard and I live as full a life as I can and it is hard. I don't feel like the doctors I've been to have given me information I should have had all along, any of them, about AEDs, seizures, any information that I should have had and now I wonder - and what else don't I know? If I hadn't had been on some chat lines and looked things up for myself I wouldn't know anything about my epilepsy. I know I'm not the only one who has this problem too.
The other reason is, I'm frightened. I feel like I'm having one organ failure after the other. Is this it! I try to stay optimistic and usually do but it is very hard to stay optimistic when you're ill, and from these blasted poisons called AEDs, which I can't live without and can't seem to live with.
HELP (with my attitude)
RE: RE: I'm scared, Dilantin is killing me!
Submitted by yannie44 on Sat, 2005-05-07 - 10:46
Hi, I'm kind of new here,My 19yo son was put on Dilantin to control what were thought to be complex partial seizures. He had only been on it for a few months and was still having 'turns' (not yet diagnosed as epilepsy). He began to have problems with his balance and blurry vision over a couple of days. I didn't realise these were symptoms of toxicity. Long story short- he had a huge tonic clonic that put him into status and spent the next three days in hosp having the worst gm seizures I have seen. I thought he would die during many of them. I didnt know a human body could bend so far backwards with such force and not snap in half! When the seizure stopped he would just lie there with his eyes open, no breathing and very quietly turn purple. A minute or more would pass as some stupid nurse assured me his was fine and I died a thousand deaths. (Yes he was fine! His eyes were open but he wasn't breathing or responding!)Stuff them! I rolled his deadweight body onto his side pushing on his ribcage and he began to cough (sweet sound). This went on over the day. I thought his brain was frying. I was told his dilantin level should have been around 40 but when he was admitted to hosp it was 85 or more (was 3 yrs ago). I wanted them to do an eeg as they had never been able to catch a seizure on tape during other hosp stays and here he was seizing all over the place. They said 'no' it wouldn't help because there was so much motor activity the reading would just be a blur. The docs said he was seizing because he was toxic, NOT from epilepsy and they could do nothing but wait until his levels dropped.On the third day as he had only had a small turn in the morning and his levels were nearly back in range they decided they would do an eeg. That evening while talking to visitors he had a very mild stare and shake. Definately not 'typical' of any turn I have witnessed. Nothing on the video. Ah, now they tell me that we now know it's NOT epilepsy. How so? says I, as these seizures were caused by the Dilantin toxicity. Sudden change of opinion- no dear, Dilantin does not CAUSE seizures. I have just about had it with the med profession! They have been stuffing around with this kid since he was 12 and KNOW that he has never had an episode like this. They want me to believe that even though his symptoms began as the Dilantin level rose, became worse as it hit it's peak and then stopped when the Dilantin levels dropped THE MEDICATION HAD NOTHING TO DO WITH HIS SEIZURES and therefore the eeg reading proved that he did not have epilepsy!! Astounding! I do not WANT my son to have epilepsy but I also do not want it discounted and be told 'he must have psychological problems to have seizures like that.' I know something is out of kilter with him and just need to know WHAT.Enough rambling.. sorry.. please someone tell me that my reasoning is sound and I have every reason to listen to these professionals and shake my head.........Regards, Yannie. sorry it wasn't really shorter...