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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: I'm scared, Dilantin is killing me!
Submitted by theresab72 on Thu, 2004-12-23 - 15:14
RE: RE: I'm scared, Dilantin is killing me!
Submitted by Gretchen on Thu, 2004-12-23 - 18:44
Thank you Jennamay for the links. That was kind of you to take the time. I'm going to read them tonight. I think I've had an incredibly good attitude since I got this and I have had some serious complications in these 6 years but gosh darn, how much can a woman take! Frankly right now I'm emotionally buried.
About Dilantin and long term use? I've always been very shy about advising anyone about anything regarding AEDs. Anyone's doctor and pharmacist should still be the only people advising any person and I feel strongly about that. However, having said that? I was first placed on Dilantin by a not so hot internist. Every neuro I've seen since then including my epileptologist have been very insistent about getting me off of Dilantin and I believe I have tried 11 AEDs with really dismal results because of severe side effects. BUT no one told me why they wanted me off of Dilantin. I heard "it's a lousy drug" by one neuro I saw for 4 years and said he didn't use it. Didn't tell me why. Another neuro told me I might not recover my memory problems getting off of Dilantin, if I ever can, that Dilantin produces in many and certainly does in me. For instance? I can never remember the date or day of the week. For a long time I had to go through my check book and fill in the year on all the checks in advance because I could never remember the YEAR we were in. Another example? I just called to schedule another blood draw for Thursday? Today is Thursday. Whoops. My epileptologist has always wanted me to make a renewed effort to get off of Dilantin and has been very firm about it but I fought him after 2 years of debilitating side effects trying one AED after the other. I became very goosey about all AEDs but Dilantin. IOW no neuro I've ever seen has wanted me to continue taking this, but I was intolerant, may still be to anything else. But no one told me it can be dangerous long term. On another chat line a person is having cardiac issues, I'm not sure what specifically, due to long term Dilantin use she stated. I've heard that if you fail on 3 AEDs and I've heard on 2 AEDs then it's pointless to try more. I don't know if that is true or not. I don't know if I "fail" on other AEDs. It's the side effects that are ridiculous and I have to jump off of them. In fact I wrote all the side effects I've had out once and it became so blasted humorous people thought I was trying to be funny and I guess a lot of it is funny but not when you're slogging through it.
The peripheral neuropathy in my feet is very unnerving. I can probably get the liver enzymes back in line by continuing taking Sily Marin because I have in the past (hopefully) and get the pancreatitis successfully treated although that is a dangerous ailment and in truth I'm very jumpy about that but peripheral neuropathy is usually not reversible. I feel like I'm walking on smooth stones all the time, I'm getting increasingly more numbness in my toes, and now my feet are always so cold I'm wearing electric socks (which help) but this is progressing rapidly, getting worse.
I wish to heck I could find the URL I found a few weeks ago and I'm trying to find it for you now in my "history" but it was research from a reputable source that did state Dilantin should now be considered only for short term and not long term use. Also? Call Parke Davis's information line. The pharmacist you use might be able to give that number to you. I've had to work with them quite a bit because of my chronic toxicity. My highest level was two weeks ago and it was 62 (normal 10-20) and I'm on a low dose. P-D had been working with my doctor trying to reduce my levels but it's been unsuccessful. Still there is an info line you can talk to and I have about these other problems which they admit, are most likely in my situation a result of long term Dilantin use and the toxicity I chronically have. I'll tell you another little thing no one told me and that's that there are over 20 OTC and scripted medicines that totally cancel the Dilantin's effectiveness. That's happened to me twice and both times I had status. Once with an antibiotic (any quinolone class), another time with an antihistamine (can't remember but it's now off the market). The pharmacist didn't pick this up because my "internist" at that time gave me these drugs from his sample closet. I'm real goosey about anything I take now. I know my system is very touchy but I'm still a patient, that's the package I come in, I don't feel it's been respected.
I know with epilepsy and AEDs often you have to give a little to gain a little but THIS! What is really upsetting to me? My 4 year old grand daughter is also on Dilantin. Her father, my son who is also an epileptic, is right now in the process of getting her switched to something different because of what we've found out about me. I don't mean to create a stampede. On the other hand I sure wish people who have had problems like I'm having, and now I'm finding out others have, would have posted somewhere about these potential problems. Obviously not everyone will have the problems I'm having please keep in mind.
Doesn't this all just kinda make you throw your hands up at times! I mean I have this rather badly, I work extremely hard in every way I can to reduce my sz's and I've been able to achieve that reduction to some degree by diet, stress reduction, exercise, accupuncture and other things. IOW, I don't passively sit around and wait for a pill to cure me. I participate in my own care. SO WHAT! I guess anger comes with depression for me. I'm feeling SO FRUSTRATED! I'm going to say something maybe not popular but when someone, not many, have said so merrily that epilepsy has made them a much better person? I feel good for you but I can think of a LOT of ways I could have become a better person using much better other ways besides THIS junk! I think epilepsy is ridiculous! Who thought of this thing anyway? I don't call it epilepsy to me it's Ambush and Hit and Run.
Pardon my ranting. I could sign my name -
Positively Worn Out
Thank you Jennamay for the links. That was kind of you to take the time. I'm going to read them tonight. I think I've had an incredibly good attitude since I got this and I have had some serious complications in these 6 years but gosh darn, how much can a woman take! Frankly right now I'm emotionally buried.
About Dilantin and long term use? I've always been very shy about advising anyone about anything regarding AEDs. Anyone's doctor and pharmacist should still be the only people advising any person and I feel strongly about that. However, having said that? I was first placed on Dilantin by a not so hot internist. Every neuro I've seen since then including my epileptologist have been very insistent about getting me off of Dilantin and I believe I have tried 11 AEDs with really dismal results because of severe side effects. BUT no one told me why they wanted me off of Dilantin. I heard "it's a lousy drug" by one neuro I saw for 4 years and said he didn't use it. Didn't tell me why. Another neuro told me I might not recover my memory problems getting off of Dilantin, if I ever can, that Dilantin produces in many and certainly does in me. For instance? I can never remember the date or day of the week. For a long time I had to go through my check book and fill in the year on all the checks in advance because I could never remember the YEAR we were in. Another example? I just called to schedule another blood draw for Thursday? Today is Thursday. Whoops. My epileptologist has always wanted me to make a renewed effort to get off of Dilantin and has been very firm about it but I fought him after 2 years of debilitating side effects trying one AED after the other. I became very goosey about all AEDs but Dilantin. IOW no neuro I've ever seen has wanted me to continue taking this, but I was intolerant, may still be to anything else. But no one told me it can be dangerous long term. On another chat line a person is having cardiac issues, I'm not sure what specifically, due to long term Dilantin use she stated. I've heard that if you fail on 3 AEDs and I've heard on 2 AEDs then it's pointless to try more. I don't know if that is true or not. I don't know if I "fail" on other AEDs. It's the side effects that are ridiculous and I have to jump off of them. In fact I wrote all the side effects I've had out once and it became so blasted humorous people thought I was trying to be funny and I guess a lot of it is funny but not when you're slogging through it.
The peripheral neuropathy in my feet is very unnerving. I can probably get the liver enzymes back in line by continuing taking Sily Marin because I have in the past (hopefully) and get the pancreatitis successfully treated although that is a dangerous ailment and in truth I'm very jumpy about that but peripheral neuropathy is usually not reversible. I feel like I'm walking on smooth stones all the time, I'm getting increasingly more numbness in my toes, and now my feet are always so cold I'm wearing electric socks (which help) but this is progressing rapidly, getting worse.
I wish to heck I could find the URL I found a few weeks ago and I'm trying to find it for you now in my "history" but it was research from a reputable source that did state Dilantin should now be considered only for short term and not long term use. Also? Call Parke Davis's information line. The pharmacist you use might be able to give that number to you. I've had to work with them quite a bit because of my chronic toxicity. My highest level was two weeks ago and it was 62 (normal 10-20) and I'm on a low dose. P-D had been working with my doctor trying to reduce my levels but it's been unsuccessful. Still there is an info line you can talk to and I have about these other problems which they admit, are most likely in my situation a result of long term Dilantin use and the toxicity I chronically have. I'll tell you another little thing no one told me and that's that there are over 20 OTC and scripted medicines that totally cancel the Dilantin's effectiveness. That's happened to me twice and both times I had status. Once with an antibiotic (any quinolone class), another time with an antihistamine (can't remember but it's now off the market). The pharmacist didn't pick this up because my "internist" at that time gave me these drugs from his sample closet. I'm real goosey about anything I take now. I know my system is very touchy but I'm still a patient, that's the package I come in, I don't feel it's been respected.
I know with epilepsy and AEDs often you have to give a little to gain a little but THIS! What is really upsetting to me? My 4 year old grand daughter is also on Dilantin. Her father, my son who is also an epileptic, is right now in the process of getting her switched to something different because of what we've found out about me. I don't mean to create a stampede. On the other hand I sure wish people who have had problems like I'm having, and now I'm finding out others have, would have posted somewhere about these potential problems. Obviously not everyone will have the problems I'm having please keep in mind.
Doesn't this all just kinda make you throw your hands up at times! I mean I have this rather badly, I work extremely hard in every way I can to reduce my sz's and I've been able to achieve that reduction to some degree by diet, stress reduction, exercise, accupuncture and other things. IOW, I don't passively sit around and wait for a pill to cure me. I participate in my own care. SO WHAT! I guess anger comes with depression for me. I'm feeling SO FRUSTRATED! I'm going to say something maybe not popular but when someone, not many, have said so merrily that epilepsy has made them a much better person? I feel good for you but I can think of a LOT of ways I could have become a better person using much better other ways besides THIS junk! I think epilepsy is ridiculous! Who thought of this thing anyway? I don't call it epilepsy to me it's Ambush and Hit and Run.
Pardon my ranting. I could sign my name -
Positively Worn Out
RE: RE: I'm scared, Dilantin is killing me!
Submitted by solboy on Tue, 2005-06-21 - 14:06
My name is Jonas Sol. I have epilepsy also. I had no idea that Dilantin should not be taken for long term use. I am on Dilantin, and have been on it for 13 years. I have memory loss and the medicine has ravaged my gums. I shake a lot and I am terrified of when the next seizure will come. My doctor didn't tell me that Dilantin could be so dangerous. I sometimes get very depressed and I could cry at the drop of a dime. This is usually not me. If I could, I wish that the seizures would stop, but I know they won't. I am very embarrassed every time I have a seizure. I feel as though the whole world is looking at me. Everyone treats me as if I am a fragile package. I know they love me, but it sometimes get irritating. I know what you are going through. Please read this message and know that there is someone going through the same thing that you are. Although I am not as sick as you are, I am sorry for your problems.