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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: Re: Dilantin Concerns
Submitted by aimeea on Wed, 2007-01-24 - 19:12
Thank you for writing. It sounds like your son has a very similar seizure diagnosis. I had my first seizure when I was 20, also in my sleep. All of the seizure I have had have only happened during sleep.
How often does your son feel the tingling sensation? I have been researching Dilantin and it is 1 of several meds. listed on the Lupus foundation website having a possible connection to Lupus-like symptoms including the terrible joint pain that I have had in my hands and wrists. Fortunately there is a test that will conclude if it is the cause for my diagnosis. I will get my results in 2 days and will make a post if it turns out that Dilantin is the culprit. Regardless, I am changing meds. I will talk to my Neurologist about Topomax and Lamictal.
Thanks again for adding a comment!
Aimee
Re: Dilantin Concerns
Submitted by realseller on Tue, 2007-01-23 - 16:36
Hi Aimee, This is the first time I've been on this site. My 19 year old son had his first seizure in Aug. and they put him on Dilantin at the emergency room. Within the next day or two he had such severe joint pain he could hardly walk. He took it for approx. 5-6 days and after calling a neurologist at the emergency room (he had not been able to see a neurologist yet)they recommended taking him off it. He has had 3 seizures since (all the seizures have been while asleep) and they now have him on Topomax, the only side effect so far seems to be a tingling sensation in his face. Hope this helps you, when we told doctors he was having the joint pain side effect they said they had never heard of that before! Typical doctors. Good luck.....Brenda