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efchan
Should I stay on Dilantin?
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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.
Recent Comments on this Discussion
I have been on Dilantin for 33+ years. The first three years weren't theraputic. I finally found a doctor who would check my level monthly on the same date. I graphed it and found that with 500mg/day, my level gradually dropped. I added one on Tuesday and one on Saturday and it levelled. I have found you have to take these things in your own hands because doctors tend to make quick decisions that can be wrong.
Your dr should know this, but you might this research online. IS DILANTIN AND MYSOLINE CONTRA-INDICATED? Dilantin doesn't work as well with a variety of AED, such as Tegretol. Check it out - Jason
Hi. I have been in Dilantin for about 7 years now, but I am curious does Dilantin make your gum swollen. I wanted to ask you since you been in it longer than I have. I have swollen gum and they tell me is because of Dilantin, when I brush my teeth it starts bleeding really easily. Does it happen to you? I have lost weight too. What can you tell me about Dilantin. Is it bad or does it just happens to me?
I've been on dilantin for 23 years using 300mg that whole time. I guess that's pretty good (lowest therapeutic dose) with side effects being fairly minimal. Of course, my memory is effected and hurts my employment. Yes, dilantin certainly can affect gums. Try using dental floss!!! You'll bleed!!! If you constantly brush your teeth and gums, they will likely toughen up and stop bleeding. Dilantin may affect weight control, although it will more likely ADD weight rather than lose weight. - Jason
Swelling of the gums is a side effect of dilantin and can lead to a lot of gum problems. Extra careful dental care is needed when someone is on dph! Make sure the doctor treating the seizures knows about this too - maybe something else will work for the seizures and not cause the gum problems!
www.epilepsy.com/medications/p_dilantin_commonside.html
Here's a link to dilantin that may help,
Epilepsy.com Resource Specialist
I am mystified to hear all you guys talking about grand mall seizures like they amount to nothing. My husband just had a grand mall seizure and it was so bizzare. He fell to the ground and his hands and feet began pounding uncontrolably. I knelt beside him and his face turned a blackish purple and I thought he was dead. I called 911. He was in the hospital for two days. He came home and about three days later he had another, although not a grand mall. He is now in the hospital, a very confused, disoriented, man. You guys talk like your seizures just happen and you just go right on with your life. Was my husbands swizures anything like your. He doesn't have epilepsy.
How about explaining this to me. I need help undersanding seizures.
Concerning whether or not to stay on Dilantin. If it has been working for you, why would you want to change. You doctor is the one to talke to. You can go to google.com and type in Physicians Desk Reference and they type in Dilantin and you will find out all about the side effects, etc. Perhaps that will help you make a better decision.
Thanks,
Carolyn
Hi Carolyn. I think the reason many of us here talk about our seizures like they are nothing and just get on with our lives, is because we have to do exactly that. For many of us, we realise that the chances are, epilepsy is a life-long condition. We do what we can to control the seziures, and limit the amount of them we have, but at the end of the day we all have one thing in common: we have to learn to cope.
I've always thought that regarding grand mal/tonic-clonic seizures in particular, in terms of emotion, witnessing a loved one going through it is much harder than going through it yourself. During a grand mal, the person is unconscious, and while it is disorientating and sometimes very distressing to wake up and realise something has happened, but unsure what, it is equally, if not more distressing, for someone to watch.
It's scary not knowing what's going on before you get any answers, and I'm sending you my best wishes. I hope your husband's doctors find his diagnosis quickly and you can start coming to terms with whatever it may be.
I'm not a doctor, so I can't diagnosis what's happening to him. Some of what you describe could be epilepsy, but there are a number of conditions that can also lead to seizure states, which I'm sure his doctors are trying to work through to see if it is anything else.
Stay strong, and feel free to come back here anytime and ask for support - I've only been on this site for a little while (epilepsy for most of my life, however) and I can say with confidence everyone here is a lovely, supportive bunch.
*hugs*
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