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gkt
gkt

One other thing about Dilantin

I have been told by physicians and pharmacists that generic Dilantin does not work as well as the name brand. So insist on name brand Dilantin.

By gkt at Tue, 04/27/2004 - 10:50am | 1181 views | 9 comments

Recent Comments on this Discussion

I was a struggling artist for years w/ no insurance. I had to buy the generic dilantin. As I've said in previous posts, it worked fine for 16 years. Only major side effect was the gum swelling. I would wash out my mouth w/ peroxide, use listerine a lot, make sure i flossed and it wasn't so bad.

ShortC...
Hi StefI was first diagnosed with complex partial when I was 10 years old and I was put on dilantin. I am now 30 and have taken dilantin for 20 yrs. Dilantin was a success for me. Over the 20 yrs that I took it I only had 3 seizures. Two out of the three seizures I had were becuase I didnt take my medication. I took 350 mg a day and it allowed me to lead a pretty normal life. I got my license at 16, went through high school and college and now work in finance. I have been able to do almost everything that someone without epilepsy can do. Although, I was never allowed to take karate when I was a kid. Some people on here say that they can't have a drink anymore. I use to be that way but one day I thought I'd give it a try and I found that having a drink didn't affect me at all. I"m not telling you to start drinking, but just to let you know, having a beer or two didnt do anything to me. So overall I would say dilantin was a success for me. However, it is definitely not a perfect medication and there are long term side effects that you should know about. I have gotten these side effects from taking dilantin for 20 yrs and can no longer take it and have had to switch to lamictal. The long term side effects are not permanent and will heal. Some of the long term side effects of dilantin are that it damages your central nervous system and the part of your brain that controls balance, although you probably won't experience any of this until you've been taking it for 15-20 yrs. I guess the nerve damage starts in your feet and works its way up. This is what I am experiencing. Also my balance is a little off if I close my eyes, put my feet together and try to stand still. Also, my hand use to shake a little bit if I tried to hold my hand steady. I never knew I was getting this nerve damage until I went to a new doctor at NYU epilepsy center and she diagonsed it. Luckily, the doctor told me that all my nerves will heal in 6 months to a year. Some of the other side effects that I noticed over the years and when I first started taking dilantin were that I would sleep a lot, my concentration was off, my mind would wander, I would struggle through math problems, I would get obsessive thoughts sometimes and my gums were swollen. Because of the nerve damage I have had to switch to lamictal and since I have been taking dilantin for 20 years my switch to lamicatal was a slow process. I had to slowly reduce my dosage of dilantin while increasing my dose of lamicatal at the same time. My body would go into shock if I reduced my dilantin real fast and it would cause a seizure. It took me about 4 months to get off dilantin. Now I am only on 150 mg a day of lamictal and so far it's working great. I havent had any seizures, my hand doesnt shake anymore, my concentration has improved dramatically, I can do math probems with ease now, obsessive thoughts are gone and my gums are going back to normal. Unlike some people on lamictal, I havent experienced a higher level of energy. I don't sleep as much as I use to when on dilantin but I sometimes feel sluggish. Also, some days my head will feel a little off but it usually goes away once I eat something. Also, every once in a while i might get a quick muscle twitch with most of them occurring as I fall asleep at night. Right now I'm happy with lamictal. It seems to be working great for me.So overall I would say dilantin was a success for me at first and I didnt start to have any of the nerve damage until I was taking it for 15-20 yrs. If dilantin is working perfect for you then thats great. It seems that a lot about your condition that you described is similar to mine, so just as a suggestion, you might want to discuss lamictal with your doctor. Its new and I've read it is a good substitute for dilantin and it doesn't have any of the side effects that dilantin has. I'm taking lamictal now and i think it is much better than dilantin. Good luck.
markds
hi this is all new to me so hope someone can give me some info,my 13 year old daughter has has 4 fits that we no of in the last 7 months she may of had more but these fits only happen during the night and unless im in her room i wouldnt no shes had one as she doesnt remember a thing when she wakes, she says all she remembers is feeling cold then nothing ,she jerks about then just lies still with eyes open and teeth clenched shut making a growling sound ,i still dont no which type she has as the docters cant seem to tell me which ,all they said after the eeg scan was yes its epilepsy ,she is on no medication at presant she had an appointment for june but they have brought it forward as she had  afit at her friends house and was takin into hospital over night ,waiting on the new appointment they said about 2 weeks .all i no is its frighting when it happens ,hope there is someone out there that can help ty xjanex
janexx
i am new to epilepsey too perhaps someone would like to write to me as i am having trouble dealing with it.my last fit left me with severe problems with my hands.i dont have proper control over them.i also have panic attacks due to pills and stutter.has anyonelse been left with permanent disorders?
jazzfire
Hi Stef, I am 23 and have had seizures since I was 5. The older I have gotten I only have them in my sleep too. All the Dr's I have seen always thought that was weird, do yours think so too? When I was younger I took Dilatin and it just did not work for me, but very little did. My parents raised me very well. They never told me I could not do something. I swam, played soccer, was on homecoming court. Yes, in school I always had to try harder for studies because I was always on so many meds but I made it through and so will you. Just never give up on HOPE! Technology and meds change have already changed so much over the past 9 years . There is too much I could say about technology these days. Good luck and If you have any questions please do not hesitate to write or e-mail: molly.stover@verizon.net. Keep Faith-Molly
mollies
I took Dilantin, along with Depakote for about 18 yrs. I had reasonable siezure control for those years. I had to learn that just taking the meds is not enough. Getting proper rest, no drinking( I do love beer!), eating right and keeping healthy( avoiding colds, flu, etc.) all contributed to remaining siezure free as possible. I no longer take Dilantin or Depakote because it won't absorb into my system to have any effect. So, I'm in the trial phase of finding a new medicine that will control my siezures. My neurologist has me now on Trileptal and Keppra. He initially had me on Trileptal and kept raising the dose until the siezures went away. The unfortunate side effects of the high dosage to stop the siezures was extreme dizziness. So, he lowered the dosage on the Trileptal and started me on Keppra. Now the dizziness has gone away and I'm actually beginning to gain a clarity of thought that I haven't experienced in a long time. A positive outlook is probably the greatest strength you can have and you seem to have it! I know I won't let the disease control me. I'm going to do my best to control it. Matt
ragnarz
Hi Steph, I've had epilepsy since I was 12. In high school they wouldn't allow me to take swimming. They wouldn't allow me to roll on my head for gymnastic. But I was the big tom boy after school. Now as an adult things are getting harder. I think people expect children to grow out of it. So employers so call friend think of you as being sick. Your not sick you have a condition and let everyone else get over it. Keep your good attitude and dont' tell employers untill after your hired. Do the best that you can do and show the world that you can do it. I had one employer that but a bad light bulb in so that it would blink he was trying to get me fired or quit. Because the light bother me . So be on your toes girl. LOL
grandm...
Stefvie,I've had seizures all my life and dilantin was one of the first drugs I took. My teeth and gums started to bleed because it was bad for my gums. Many others had this problem so keep an eye on that. I'll try to explain the generic vs name brand and see if you can understand me. Generic drug makers are very good at what they do, however, when a drug company buys generic drugs they buy from the company that happens to be cheapest at the time, so of course the may buy from one company today and someone else next week. The first company keeps its drugs a consistant strenght, and the second keeps theres the same, however the first company isn't necessarallly the same strenght as the first. So when you take 300mgs from the first company you may have to take 450mgs when they change to a different provider to give you the same strenght. However since you prescription calls for 300mgs thats what you get.And it may be to week. I hope that helps you understand. Good luck to you, Bob
washkuhnr
Hey Bob,I think the DILANTIN I'm using is brand name. It's from Parke Davis 100mg caps, at least that's what's written on the caps.Paid 16$ Canadian for a 2 month supply (180 caps). I find that price pretty low... (this is actually the very first time I buy prescription medicine, so I have no idea what's the price range for such meds).As for side effects, I don't know when they'll occur. I've been taking 300mg per day for 30days now. To my knowledge, nothing is showing yet. I'll be going for a blood test in the coming days to check the dilantin concentration in my blood stream.Cheers,- Stef.
stefvie