I'm scared, Dilantin is killing me!

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I 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)

Comments

RE: RE: I'm scared, Dilantin is killing me!

Submitted by ButterflyGrl on Sun, 2005-08-07 - 22:11

OK....ALL OF THIS IS MAKING ME PETRIFIED!!!I was just diagnosed with Partial Epilepsy a week ago.I was taken off of Tegretol (600mg a day) because I was a zombie.I have only been on DILANTIN (200mg at bedtime) for about a week, and the only side effect I experience is DROWSINESS, and maybe the odd VERY MILD aura.Other than that, I think it's fine.All of these threads sound like it's a drug designed to kill you.WHAT AM I TO BELIEVE NOW?

RE: RE: RE: I'm scared, Dilantin is killing me!

Submitted by Gretchin on Mon, 2005-08-08 - 01:45

Hi ButterflyI started this thread but I did so with ambivalent feelings. Before I started this thread I did research my facts, reviewed what Dilantin is doing to me, and decided it's too serious to keep to myself but I don't like to start a stampede either. I DO think it's been very interesting to read all these posts and I started this thread months ago. This topic, stays alive. I felt I needed to get a firm message out. Apparently many others have had problems too. I've read them all with interest but I can't remember them all. Let me put in a capsule SOME things. I'm not going to remember them all. What I'm going to capsulize here is information given to me by MY doctor, several pharmacists, my personal experiences (of one), Parke-Davis (maker), and what other posters here and other places have posted.--Many people newly diagnosed with E are placed on Dilantin because it is the AED you don't have to build up to. It has a rapid acting AED effect. Therefore there is a place for it. My newly diagnosed daughter was placed on it and when she was more stabilized in about a month she saw an epileptologist who changed her to a different AED. --I've been a patient of several neurologist's, and several epileptologists due to moving. Every single one has told me they do not use nor recommend Dilantin except for a month or two while getting onto another AED.--Every medication comes with a "crimp". This crimp you can ask for from your pharmacist. On it , it will list all potential side effects of Dilantin, or whatever drug you're studying. But note it doesn't give what percentage of people get these things. It could be one.--A person on this thread, if their post is still up, stated they had a relative die from long term Dilantin usage. That could potentially happen to me. The reason I started this thread.--Dilantin can cause pancreatitis. This is a dangerous infection/inflammation in the pancreus, and can be fatal if not treated aggressively. It's very easy to diagnose. No one should have lipase levels in their blood. If you do, I'm told you most likely have at least an inflammed pancreus, which is not a common disease, can and has made me very ill, takes long term IV antibiotic treatment. Since I've had it so often and I have no other known risk factors except Dilantin usage? It's been declared it is due to "long term" Dilantin use. For me that is 6+ years. I have had it 3 times over 2.5 years. Now I'm in my 4th time and while it's not as bad as it was? It's also this time not going away. I'm being sent to an endocrinologist with the thought it has become chronic. I'm on insulin. This really scares me. You can't live without your pancreus and I'm told this chronic inflammation/infection can cause eventual pancreatic cancer. Note: all the "can be's, maybe's and if's". --Dilantin should not be used if pregnant. It has a high incidence of birth defects and still births. As an ex L&D nurse of many years it is still astounding to me how many OB's, at least in the past, didn't know that. --The most complaints I've personally heard about Dilantin is sleepiness, which I might have eventually gotten over, I had to play with dosing, splitting them up. I actually can't remember how I felt before I started taking it though. It is a known memory robber. Literature did state that once a person stops taking Dilantin their memory problems resolve. Mine have worsened and I have been told to ME by MY doctor I might not be able to retrieve all of my memory loss from Dilantin if he can ever find something else I can take.--Another thing it's known for, especially in children, is hypertrophic gums. Or gums that overgrow. I was warned to pratice scrupulous oral hygiene. I did, 3 times a day, but I started getting blisters on the roof and gums in my mouth. If I don't brush about every 4 hours these blisters reappear and they're moderately painful. I know others who get these and I know others who don't. However I brushed so vigorously and often I have gum hypotrophy or a receeding gum line, thus loose teeth, and I'm loosing them. Plus my teeth are decaying at an alarming rate because I've brushed off the enamel. But it's either vigorous frequent teeth brushing, and massing of gums, or I get blisters nearly instantly.--Dilantin is hard on the liver particularly in combination with some known other drugs. I am in chronic liver failure but it was found it's not from Dilantin. I got a bad batch in l986 of live hepatitus serum in injections. I have chronic serum hepatitus. But it was a surprise, they were sure it was the Dilantin particularly in combination with the Klonopin I have to take.--Others here have posted they've taken it up to 40 years with no difficulty.--I have peripheral neuropathy in my feet, dying of the nerves, and that can't be reversed. It's proceeding rapidly. It's attributed to Dilantin.--Periodically I'll start bruising out of proportion to falling, bumps etc I'll have my blood checked in a CBC and find my platelettes are low. That's a sticky cell that helps your blood clot. With low plates I bruise copiously. Unfortunatley for me I took some hard raps on the head and had a brain hemorrhage. --I can't seem to get off of it. They've tried sedating me, v-e-r-y- slowly titrating me down and bringing me up on something else? I have a status sz every time. But so far? I've also been totally intolerant to any other AED and I've taken nearly all of them. There is a new one coming out or just out, that metabolizes differently than any other AED out now, and when I recover a little more from the surgery I just had, and I'm moved, I'm going to give ye old try again. I have to.--It is one of the cheapest AEDs.My advice is if you have alternatives? I'd use them. But then look at the problems I've had and read other's posts who have had none. It's a gamble I guess, and it's up to you to decide. IOW it's a drug with potential risks for long term use. I think it has it's place. But then consider ALL the many people on say Lamictal and Keppra, relatively new drugs. Who knows the effects of long term use on those drugs? No one yet. It's a gamble with all these drugs, they're very powerful. I think Dilantin is an excellent drug when you first start sz'ing to use while you're coming up to a therpeutical level on another drug but as for long term use? I've never been able to get the definition of "long term". I didn't think 6+ years would be long term but apparently it is. I got snockered with many of the potential risks. Maybe you won't. But I wasn't warned of any of this. I was only told many times, all neuro's and epileptologists wanted me off it. Not a one told me why. And that is why I started this thread. I assumed others weren't told either.Gretchen

RE: I'm scared, Dilantin is killing me!

Submitted by MORNING on Tue, 2005-08-09 - 11:11

I believe that Dilantin contributed to my brother's death. He took it for about 20 years or maybe more (have trouble with numbers). He died of liver failure.