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.
New to Dilantin and concerned
Tue, 08/01/2006 - 16:14Topic: Medication Issues
Hi All, I have been on 2500mg Keppra and recently I saw an Epileptologist. With my TLE not under control and bad side effects of Keppra he decided to change me to Dilantin and reduce/eliminate the Keppra once blood tests were up to theraputic levels. He himself has done research on Keppra and believes that Dilantin may be a good choice for me. I am very concerned because of what I have read about Dilantin. So far I am on 300mgs and little or no side effects except being tired a lot(seizures are reduced by 70% but still there. After blood test, my level was really low. On a positive note, the Dilantin immediately helped with the emotional side effects of Keppra.I would really appreciate any advice with anyone on Dilantin since all I have read about it, is quite unnerving? Thanks for any thoughts, Rita
Comments
Re: New to Dilantin and concerned
Submitted by babzy on Mon, 2007-05-21 - 01:18
hi rita,
i have been on dilantin since i was diagnosed 35 yrs ago.although i still have complex partial seizures, id rather deal with them than play with fire.i am able to do so much more on dilantin than on any experimental drug due to its lack of control to your mind
dilantin doesnt make you gain weight, it gives you facial hair as well as puffy gums.over time it can affect your bones but like any drug used in long term control.i could only take 260 mg a day as 300mg made me dizzy,&tired.i think once you have built up a resistance to the dilantin, the amt you take may be cut back..good luck..
Re: New to Dilantin and concerned
Submitted by babzy on Mon, 2007-05-21 - 01:22
hi rita, forgot to let you know, all 3 pregnancys were healthy and no complications.good luck
Re: Re: New to Dilantin and concerned
Submitted by sharonmlee on Tue, 2006-10-24 - 14:42
Hey Rita, When I was first diagnosed with epilepsy 24 years ago, I was put on Dilatin. I hated it. I was a very light sleeper. After Dilatin, I was tired all the time. My gums did bleed and the dentist told me to take extra vitamin B-12. After a few years, I had bone loss under two teeth. The dentist said it could be from the Dilatin. I saw a different Neurologist in college and he suggested that if I wanted to have children some day he did not recommend I stay on Dilatin. I switched to Tegretol and I liked it much better. I did have two healthy pregnancies and children. I do not know it this is the same opinion today in that I switched 18 years ago. I have not had side effects until lately which is the same for Dilatin and that is low vitamin D resulting in bone loss. Good Luck! Sharon