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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)
Comments
RE: RE: RE: RE: I'm scared, Dilantin is killing me!
Submitted by LeeMc on Sun, 2005-01-02 - 23:12
Yeah it's Lee here. Still on Dilantin for more then 30 years now. It works - I remain seizure free but have suffered side effects that are less then fun! Dental were the first and most persistant. Kept all my own teeth until 3 years ago. It took lots of work and hygene but it was worth it. Still have my bottoms but they are going before long. Liver tests are good but memory is getting worse (partly due to menopause as well). How much more can I expect from the long term use? I don't know but will be finding out what other options I may have now - 30 years later and 30 years older and with medicine 30 years more advanced. It did what it needed to do when I needed for it to be doing it.....guess I can't gripe about that. Hope you all find what works for you.
Happy New Year one and all.............Lee
Yeah it's Lee here. Still on Dilantin for more then 30 years now. It works - I remain seizure free but have suffered side effects that are less then fun! Dental were the first and most persistant. Kept all my own teeth until 3 years ago. It took lots of work and hygene but it was worth it. Still have my bottoms but they are going before long. Liver tests are good but memory is getting worse (partly due to menopause as well). How much more can I expect from the long term use? I don't know but will be finding out what other options I may have now - 30 years later and 30 years older and with medicine 30 years more advanced. It did what it needed to do when I needed for it to be doing it.....guess I can't gripe about that. Hope you all find what works for you.
Happy New Year one and all.............Lee
RE: RE: RE: I'm scared, Dilantin is killing me!
Submitted by mexican_fire on Mon, 2004-12-27 - 18:15
Yes, your doc is dumb, or trying to hide something from you that he doesn't think you should know. They do that, even though they shouldn't.
Yes, those types of seizures DO affect memory, BIG time. I have a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome. The seizures are called Amygdala-Hippocampal seizures (location in brain where they originate). The hippocampus is responsible for any and all things memory. The amount of memory deficit is linked to how much damage is done to the hippocampus, shrinkage, atrophy, or sclerosing, which is the most common of them.
They warned me a year ago, that my messed up memory was because of it going untreated since birth. I was born with Myoclonic seizures (muscle-jerk seizures), then developed nocturnal Grand Mal seizures. Those lasted until I was at least 16 or 17, then remitted, or so we thought.
When I was 24 or 25, I started having partial seizures, all forms (aura, SPS, CPS, and Secondarily Generalized TCs (nocturnal). The last one to appear was the TC. That was last year in June sometime.
THose never went away, and I still have all those types, and to make it worse, I developed a form of Reflex epilepsy (flashing lights). Here is where the Absence come into play, as an adult. I have a history of them, and they came back later as another form or itself.
I still have the Myoclonics, as well.
My memory stinks from all of this. It is shot, the short term part is, because I can't retain anything said or done. My mom can tell me something, and 3 seconds later, I am asking her to repeat herself. I have to write everything down on a note pad, so I can remember. I have my watch set to go off at 4 pm MST so I don't forget to take my afternoon dose of Neurontin. The epi decided to change the way I was taking it, from where the neuro I had first, had me taking it 2 times a day (1800 mgsx2), now in November after 2 years of the other way, he decides to change it to three times a day (1200 mgsx3), and it has caused me to forget it several times or take it an hour later than I should.
The books are right as well as any other info you read about it. TLE is just a "headache" literally (pun intended).
Your grammar skills, language skills, speech etc should also be taking a nose-dive if they haven't done so already.
I just got hit hard, because no one picked up on it. They were more interested in my irratic behavior, and insisted I had ADHD/ADD, and made my mom take me to the doc and get put on Ritalin or they wouldn't take me for the 4th grade term. It was wrong of them, to stick their heads in the hole like some big dumb bird and try to ignore it, because it wasn't going away, just getting worse. It is a CNS stimulant and this is a drug that should NEVER, EVER be given to ANYONE with a known or active seizure disorder, because it will just make eveything worse.
I was told I day-dreamed all the time, was inattentive, and a total bolivion (spelling) to everything around me, and was zoned-out.
Nancy
Yes, your doc is dumb, or trying to hide something from you that he doesn't think you should know. They do that, even though they shouldn't.
Yes, those types of seizures DO affect memory, BIG time. I have a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome. The seizures are called Amygdala-Hippocampal seizures (location in brain where they originate). The hippocampus is responsible for any and all things memory. The amount of memory deficit is linked to how much damage is done to the hippocampus, shrinkage, atrophy, or sclerosing, which is the most common of them.
They warned me a year ago, that my messed up memory was because of it going untreated since birth. I was born with Myoclonic seizures (muscle-jerk seizures), then developed nocturnal Grand Mal seizures. Those lasted until I was at least 16 or 17, then remitted, or so we thought.
When I was 24 or 25, I started having partial seizures, all forms (aura, SPS, CPS, and Secondarily Generalized TCs (nocturnal). The last one to appear was the TC. That was last year in June sometime.
THose never went away, and I still have all those types, and to make it worse, I developed a form of Reflex epilepsy (flashing lights). Here is where the Absence come into play, as an adult. I have a history of them, and they came back later as another form or itself.
I still have the Myoclonics, as well.
My memory stinks from all of this. It is shot, the short term part is, because I can't retain anything said or done. My mom can tell me something, and 3 seconds later, I am asking her to repeat herself. I have to write everything down on a note pad, so I can remember. I have my watch set to go off at 4 pm MST so I don't forget to take my afternoon dose of Neurontin. The epi decided to change the way I was taking it, from where the neuro I had first, had me taking it 2 times a day (1800 mgsx2), now in November after 2 years of the other way, he decides to change it to three times a day (1200 mgsx3), and it has caused me to forget it several times or take it an hour later than I should.
The books are right as well as any other info you read about it. TLE is just a "headache" literally (pun intended).
Your grammar skills, language skills, speech etc should also be taking a nose-dive if they haven't done so already.
I just got hit hard, because no one picked up on it. They were more interested in my irratic behavior, and insisted I had ADHD/ADD, and made my mom take me to the doc and get put on Ritalin or they wouldn't take me for the 4th grade term. It was wrong of them, to stick their heads in the hole like some big dumb bird and try to ignore it, because it wasn't going away, just getting worse. It is a CNS stimulant and this is a drug that should NEVER, EVER be given to ANYONE with a known or active seizure disorder, because it will just make eveything worse.
I was told I day-dreamed all the time, was inattentive, and a total bolivion (spelling) to everything around me, and was zoned-out.
Nancy