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Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAYi am a 36 year old male, who began having seizures when i was approximately 24 years old. They were grand mal seizures and happened about once every 3 months. i finally started taking dilantin and the seizures stopped. about a year ago the seizures started again, only this time, they are different. I dont lose consciousness, i just get confused and cant remember names for a few minutes. I started seeing my neuro again and he raised my dilantin med and put me on topamax. the seizures have not stopped and i have 2 questions that no one can seem to answer. why is the meds no longer working and why is that i get a fluttering in my left ear during a seizure. That is when i know it is coming on and when my left ear stops fluttering, thats when i know the seizure has stopped. Has anyone had this same sensation?

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From the time your seizures were under control to the time you had seizure breakthrough, had you switched from the brand name Dilantin to a generic version of Phenytoin? Or, if you had been on a generic has there been a change in manufacturers?
The sensation you are having with your ear is most likely an aura. You can read more about auras here... Auras | epilepsy.com.
Sometimes certain foods can affect the way a medication is absorbed, particularly Dilantin. I know milk and antacids can affect its absorption rate. With that being said, I'm sure that taking it on an empty stomach can affect absorption rates, too. When my daughter was on Dilantin, her levels were all over the place. Very inconsistent. In hindsight I would bet my money on the way she took it, whether it was with food or not. I can't remember if Dilantin is one of those meds that's not recommended taken with grapefruit juice. Talk to your pharmacist on this one. They should be able to help you.
~Karen
hey Karen, thanks for your input, i have been switched from Dilantin to generic pheneyoin, however it was years before i started having seizures again. You did mention something about antacids. I take 3 150 mg Zantacs a day for heartburn. i was also recently told about a heart condition called Long QT. i havnt had an EKG to diagnose this but its a possiblity, just another thing i wanted to throw in there, im desperate for answers that my docs cant seem to find
Two things...generics can work effectively as long as you stick with the same manufacturer. Most pharmacies can order the generic medication from the company that makes the meds that you usually take. As for the loss in seizure control....a shot in the dark but something to always remember.
I would talk to your pharmacist about the Zantac and the Dilantin and see how you can manage the heartburn without interfering with the absorption rate of the Dilantin. If this is the culprit, I wonder if you would benefit from taking one of those once a day antacids rather than having it three times a day. If your heartburn is something that has been plaguing you for quite awhile, I'd suggest seeing your family physician (or gastroenterologist) to see if you could nip that in the bud. If you could figure out why you're having the heartburn (coffee, spicy foods, etc) perhaps by eliminating that food can bring about relief so you don't have to take the antacid.
The EKG test should tell you right away if you have any issues with Long QT Syndrome. If you schedule a test it's one less thing you'll have to worry about.
Keep us posted.
~Karen