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.

Dilantin blood level issues

Fri, 06/30/2006 - 22:47

Topic: Medication Issues

I have taken Dilantin for almost 40 years. After having a seizure in January, I asked my neurologist about changing to a different medication and was weaned from Dilantin to Depakote ER. Unfortunately in May I had a seizure just days after being only on Depakote (my first ever at my place of work). I was taken to the ER and where I suffered another seizure. It was decided to immediately put me back on Dilantin. I had a blood level test done on Friday June 23 and the results came back as 39.5. The neuro called on Tues the 27th and said to skip my medicine on Tuesday and Wednesday night then take another blood level test on Thursday. The test came back at 40. Today, Friday, she called to say stop taking the Dilantin Friday, Saturday, and Sunday. Then to get another blood level done on Monday. I am scared to death that I will have a seizure. Everything I have read advises not skipping medicines...I can't understand why the neuro would advise me to so this. I realize that I am in the toxic range but can't believe not taking any dilantin at all is the way to go. Has anyone else had any experience with this? Please let me know what you think. Thanks, Faye

Comments

Re: Dilantin blood level issues

Submitted by SammiSnail on Sun, 2006-07-02 - 02:04

I have never had this happen to me, but I am sure your doc knows what she is doing. I can understand what she is doing. I would be scared myself. Only it is something that has to be done in order to help you. You are in my thoughts, Sammi

Re: Re: Dilantin blood level issues

Submitted by sandy4917 on Sun, 2006-07-02 - 13:25

I've been there. my Dilantin level reached 39 once,I couldn't hardly walk. Looked like a complete drunk. Doc told me stop taking Dilantin and get blood level checked in a couple of days. Problem was i was heading out of town for a wedding. I too was Very nervous of having a siezure. I had to line up a blood level check in the state i was traveling to. I think in this case they put a rush on it so you can know very soon if you're still toxic or if you need to start taking it. I never had a seizure when i wasn't taking Dilantin - I was told that as long as i was at a therapudic dose i should be fine.I think i stopped for 3 days, and then began again gradually until my levels were back to normal. Hope this helps, good luck. Sandy

Re: Re: Re: Dilantin blood level issues

Submitted by fayenobles on Sun, 2006-07-02 - 20:45

Thanks Sandy. You have helped a lot by sharing what you experienced. I am feeling much calmer about the situation today. Perhaps it is because I am coming out of the toxicity and my brain can function better. I am just grateful no matter what reason. Wish I had started research on epilepsy instead of genealogy 6 years ago. :-) Of course I wasn't having problems then so ..... Faye

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.