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Dilantin Concerns
Sat, 01/20/2007 - 13:07Topic: New to Epilepsy.com
This is my first time on this site. I trying to solve some serious medical concerns that I have been experiencing over the past couple of years. I was diagnosed with a seizure disorder back in 93. My doctor tried out several medication options over a period of a couple of years and Dilantin ended up being the medicine of choice. I have been on Dilantin (Generic for several of the years) for almost 13 years now and over the past 2 years have had some possible side-effect concerns. My blood work tested positive for Lupus a year and a half ago and then was retested and appeared to be a false positive. Several blood tests since have reported a positive ANA and a positive test for Rheumatoid Arthritis and possible Lupus again. I have a lot of joint pain in my hands, wrists and knees. It is unclear thus far if Dilantin is the cause for these conditions, however, I have found many articles linking Dilantin and Lupus symptoms.
I will be seeing a Neurologist next week to discuss medications. The only medicine I know is Dilantin. I have heard there are a lot of new meds. on the market now. Has anyone switched from Dilantin to one of these medications and if so what is your experience?
I am hoping this site will help me locate other people who have had similar experiences. I am realizing that I am going to need to be very persistent with my physicians in determing a cause and solution to my medical concerns.
Thanks for listening!
Aimee
Comments
Re: Dilantin Concerns
Submitted by musmashels on Sun, 2007-01-21 - 14:39
Hi Amiee,
Three years ago I had brain surgery for a subcranial arachnoid cyst. There were extreme complications and I ended up having a stroke and losing a large portion of my cerebellum. Because of this I was put on Dilantin as a precaution while in the hospital and after I got out. I was on it for about a month and a half and got a horrible skin rash. It was absolutely terrible. I had to stay in the hospital and was almost sent to a burn clinic because it was so bad. A year ago I started to have seizures and was put on Lamictal because of the low chance of side effects. I have started to experience the side effects but from what my neuro. told me they aren't that common. I don't know if this is true but I know a lot of people who are happy with Lamictal. I obviously think it is better than Dilantin lol!There are so many kinds of seizure medication I'm sure you will find one that fits you.
-A
Re: Dilantin Concerns
Submitted by carrieb on Sun, 2007-01-21 - 15:47
I've never been on Dilantin, but Lamictal works great for me. I've been on it for a long, long time. The only problem I have is nausea and double vision in the morning if I take on an empty stomach. Something as light as a yogurt will suffice, though, as I'm normally not a breakfast eater. By far, the best med I've ever been on, and I've tried many.
Re: Dilantin Concerns
Submitted by gwen48 on Sun, 2007-01-21 - 11:15
Hi Aimee: My experience on Dilantin, as far as side effects are slightly receding gums, after being on it for almost thirty years. I have memory and concentration problems, but other than that I can not identify any other side effects relating to it. I do take the liquid form, and brand name. The delivery method into my system seems to work better with the liquid. I am sorry you are having these difficulties, and I hope your doctor finds some solutions for you. I have not been on any other meds for seizures in all these years, so can only report on the Dilantin. Side effects will be a problem for any medication, and according to my research it all depends on the individual. I have no other health problems except for seizures of which I have been free of for 19 months. I do cardio, weights and eat healthy and am in great shape for my age. So, the best advice I can give you is take good care of yourself! The best of luck to you. Gwen