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.
Should I stay on Dilantin?
Sun, 01/16/2005 - 13:38Topic: Medication Issues
Hi guys,I've been taking Dilantin about 10 years for my Grand Mals which used to occur maybe once every couple months. It doesn't give me major side effects, but several things are prompting me to think about switching: - Dilantin blood level is dropping even though my dosage has been steady for 5+ years (~400mg), leading to a breakthrough seizure - Just had a bone density scan done, mild osteopenia (-1.7 on lumbar?), I was unpleasantly surprised.... and I'm just 29/30, many years of bad bone if this continues! (I don't take any supplements) - Word that new medicines such as Trileptal have fewer side effects (like no bone problems).So I hope I can probe the collective wisdom of the forum and ask you guys some questions to help me make up my mind:- Should I be worried about status epilepticus when switching?- I've found posts complaining about poor bone density after long Dilantin use. Any success stories of long Dilantin use together with Vit D + Calcium supplements out there? That'd be encouraging, at least.- Does Dilantin efficacy decline with age? Why do blood levels go down over time? Could this be a long-term trend? I don't want to have to take higher and higher doses and be taking toxic levels of Dilantin forever.- Anyone have long-term side effects from Trileptal?thanks so much!-EvanAlso, I currently take my medicine 2x a day. Which do you guys think is the most important: - taking meds 12 hours apart - taking meds consistently (same time every day) - taking meds early in the morning and evening to maximize the blood level of Dilantin when I'm awake - taking it at whatever time which makes it least likely for me to forget.
Comments
RE: RE: Should I stay on Dilantin?
Submitted by Gretchen on Sat, 2005-01-15 - 01:21
Dilantin has historically been the only thing I can tolerate. Not that I haven't had side effects but it was the least of all evils. I started out at first with the usual recommended 300 mg at night. Was a zombie all the next day. Played around with my doses and found for just ME if I took 100 mg 0730 and 200 mg 0930. That helped a lot with the "sleepies". However my memory was still shot to sh**. In fact I worry it has taken a permanent hike.I also take Klonopin three times a day which potentiates or increases Dilantin's efficiency in me, 2 mg 3x a day but I don't always take every dose which I know is wrong wrong wrong still it's addictive, I try to skip doses if I can which is ridiculous because I know I have to be addicted to it, but still......it's the thought. I started at 1 mg at night and migrated to this high of a dose but they've tried hard not to raise it since I'm so narrowed on what AEDs I can take but I desperately need Klonopin to settle Jerks. If they quit making Klonopin I'm throwing in the towel. 2 mg 3x a day is a large dose, but I get severe "twitchies" everywhere on my body all at once. Sometimes I wonder if the Alien is going to burst out of my chest, drooling egg white all over me, but my muscles are "rolling" violently all over! This is not aesthetically pleasant to watch I'm sure and feels miserable, more than miserable but I don't know that word yet. The aura lasts throughout which is this highly miserable mind bending feeling of overwhelming doom, something very bad is about to happen feeling, doesn't leave until the twitchies leave. Thinking of it, something doom-like is already happening! Twitchies all over da bod are scientifically called status jerks. Tis miserable. I also get "normal jerks", zzzzt feeling then one hard JERK, you know, like normal people, then it's over, until the next one, which I highly prefer to twitchies. Dilantin alone does not touch Jerks or twitchies. Klonopin normally "cures" the Jerks.My levels stayed high normal , around 18-19, for several years and then suddenly I'm going toxic all the time. That ended in me being toxic ALL the time which lasted for 2 years. As long as I stayed around 24-25, it was tolerable (normal in my lab 10-20) and for awhile I sz'd slightly less too. But then I started having these gigantic levels in the 40's and 50's. Last time I was admitted by my epileptologist I was blinking in and out of consciousness and my level was 62. WELL! We certainly have to do something about that especially since I had pancreatitis induced by Dilantin, soaring liver enzymes Dilantin induced and peripheral neuropathy that is worsening at a frightening speed in my feet, also Dilantin induced. This is not just my assessment or my doctors either. Parke-Davis, manufacturer, was contacted and they said - get her off of that. Since then I've talked to Parke Davis and their new recommendation is Dilantin is for short term use only. They've apparently just decided. And now they tell me!My grand daughter was also on Dilantin, WAS, we got her off of it but quick!I thought - good grief I know tons of people who have been on this a lot longer than the 6 years I have albeit not as toxic as I've been perpetually nonstop. I'm post menapausal with ovarian removal, going in for a bone density test next week and I'm not sure I want the results. It occurred to me last week I have been breaking many bones. I also drop a lot tho too. But.....what comes first the horse or the cart? Every single doctor I've gone to has said - they don't like Dilantin heavily encouraged me to get off of it but I was adamant, NO - (pouting). The side effects of all others were horrors! But I have a thing about loosing my pancreas, liver and feet.Please let me direct you to my thread start and the subsequent posts please also read about my problems with Dilantin, as well as other poster's experiences. Ah.......ummmmm......okay since I'm on Dilantin the memory robber, I can't remember how the thread is entitled. Shoot. A maybe it starts out "Help..." Not sure. Well it's fairly recent, informative, and phrased a little hysterically. I suggest all Dilantin users find out for themselves the risks, if any, for them. ALL these AEDs are a trade off -- give a little, take a little. But I'm giving more than a little, so I must change AEDs (gulp). I guess it depends on your particular response to any drug and what organ or appendage you want to donate. I am definitely not a 'Fraidy Cat either but vital organs are being effected plus those things I walk on? I already have an artificial knee. I was told 40% of one liver transplant's list was from Tylenol abuse and people on chronic medications. Another pleasant thought. So.....holistic approaches such as accupuncture have helped me (can't afford that weekly however), and the marijuana "cure" which I have tried and am a heavy proponent of? Mad me feel like the floor was severely slanted and I had to hold onto things to walk. And many other holistic approaches many of which help chip away at the problem, some don't. DIET, working hard at what I can eat, when, in what quantities? Normal blood sugar is 80-110, right? I can tell now without even testing it if my blood sugar falls 84 or below? I'm in status country. Diet means really working on it? But has helped me as much as anything else. Once I got the diet thingy all worked out, it's not hard any longer, pretty much automatic (except when I tried a wine cooler and a beer once (even only 1/2 of that beer) - found out I am a very cheap date combining just 3.2 alcohol and Dilantin!).I think it important to state we should realize there is no magic bullet (or pill) with epilepsy for most or at least those I know who post. For those who do go on an AED and their sz's do stop right off and that's that? I don't talk to them they're not in my world - I'M KIDDING !!! lol (actually I'm jealous, shhh....)I've never been able to go over 300 mg BTW. I'm sure some adults are at 300 mg, considered lowest therapeutic amount to take, starting dose IOW. What's irritating is does this control me? Heck no. But? I'd probably be dead off of it tho. GretchenPS I have proofed this many times, find mistakes every time. I am "recovering" from a sz and still have the fuzzies apparently still but I THINK I got the errors fixed if not, bare with okay?
RE: RE: Should I stay on Dilantin?
Submitted by Christine on Sun, 2005-01-16 - 13:38
I have been on Dilantin for over 10 years and have had no side effects at all! I had to increase my dosage as it became apparent that my seizure activity increased at menstrual time (called "Catamenial seizure activity.") I will keep reading this section as I was/am not aware of bone density issues.
RE: Should I stay on Dilantin?
Submitted by LeeMc on Fri, 2005-01-14 - 21:39
Lee here. I too take Dilantin and have for over 30 years. I also take AM and PM doses. It was discovered that this was the best way to help keep my levels where they needed to be. I began having small breakthrough Deju Vue type seizures after about 5 or 6 years on 500 mg a day so it was dropped to 400 mg. That was fine for many years.
When I began to have the additional problems of hormones (peri-menopause) we did raise my evening dose by 30 mg. That too was fine for quite some time but we recently raised it again by 30 mg and added that to my morning dose since I am now in full blown menopause and experiencing many "ODD" or unusual things that cause me to wonder what is happening.
I am not toxic at this level but I am reluctant to increase the additional 40 mg to the original 500 mg. I will be going in for a full re-evaluation in the fall when my business and family can afford to be without me for whatever length of time it takes to fully re-evaluate.
I was told by my neuro and my family doctors that the evening dose was the most important one. I used to take it before I went to bed but then I started falling asleep on the couch and it got later some nights before I got it taken. Nothing has happened but I always wonder......I began taking it with my evening meal because that was more likely to be in the same time range from day to day. I take my morning dose before I leave for work so it can become an effort to remember to take it on weekends when I don't have to go to work....if I take it when I brush my teeth I am pretty close.
I am now taking the generic form of Dilantin in the 100 mg caps. The 100 mg caps are a time release form. The 30 mg are not available in the generic brand and are not timed release. They also cost twice as much for half as many. I also take the generic form of Mysoline along with the Dilantin.
I would like to have fewer side effects and if I had been through a re-evaluation before 30 years had passed I may have been able to get something with fewer side effects that would now cost less money because it too would have had it's patent expire so that generic options would be available. In the meantime I do all the preventive maintenance that I can. I too had low bone density but have since been on 1200 mg Calcium (600 2x daily) and 800 mg of Vitamin D (400 2x daily) and I have noted an improvement but we will have to wait until I can be retested to prove it. I also take a magnesium suppliment with zinc and also vitamin B complex.
Have your doctor test and see where you are with vitamin and mineral levels and then suppliment accordingly. Preventive maintenance is far less expensive then fixing things after they have broken.
Wishing you the best...........................Lee
Lee here. I too take Dilantin and have for over 30 years. I also take AM and PM doses. It was discovered that this was the best way to help keep my levels where they needed to be. I began having small breakthrough Deju Vue type seizures after about 5 or 6 years on 500 mg a day so it was dropped to 400 mg. That was fine for many years.
When I began to have the additional problems of hormones (peri-menopause) we did raise my evening dose by 30 mg. That too was fine for quite some time but we recently raised it again by 30 mg and added that to my morning dose since I am now in full blown menopause and experiencing many "ODD" or unusual things that cause me to wonder what is happening.
I am not toxic at this level but I am reluctant to increase the additional 40 mg to the original 500 mg. I will be going in for a full re-evaluation in the fall when my business and family can afford to be without me for whatever length of time it takes to fully re-evaluate.
I was told by my neuro and my family doctors that the evening dose was the most important one. I used to take it before I went to bed but then I started falling asleep on the couch and it got later some nights before I got it taken. Nothing has happened but I always wonder......I began taking it with my evening meal because that was more likely to be in the same time range from day to day. I take my morning dose before I leave for work so it can become an effort to remember to take it on weekends when I don't have to go to work....if I take it when I brush my teeth I am pretty close.
I am now taking the generic form of Dilantin in the 100 mg caps. The 100 mg caps are a time release form. The 30 mg are not available in the generic brand and are not timed release. They also cost twice as much for half as many. I also take the generic form of Mysoline along with the Dilantin.
I would like to have fewer side effects and if I had been through a re-evaluation before 30 years had passed I may have been able to get something with fewer side effects that would now cost less money because it too would have had it's patent expire so that generic options would be available. In the meantime I do all the preventive maintenance that I can. I too had low bone density but have since been on 1200 mg Calcium (600 2x daily) and 800 mg of Vitamin D (400 2x daily) and I have noted an improvement but we will have to wait until I can be retested to prove it. I also take a magnesium suppliment with zinc and also vitamin B complex.
Have your doctor test and see where you are with vitamin and mineral levels and then suppliment accordingly. Preventive maintenance is far less expensive then fixing things after they have broken.
Wishing you the best...........................Lee