Community Forum

Change in meds = more seizures and a change in my seizures

In September of 2018 I was admitted into the hospital by my pulmonologist because I had been fighting pneumonia for over a year (it is now over 2 years)...I had my first seizure in April of 1995, and I remember this so clearly because my youngest daughter (she is my 3rd child) was 2 weeks old...To me, this is important because I am my mother's third child and I was 4 days old when she had her first seizure...My brother was at my house when I had my first seizure and knew exactly what to do...I was put on Dilantin and phenobarbital...I was able to get rid of the phenobarbital, and had been on a total of 600mg of Dilantin per day (300 mg in the a.m. and 300mg at bed time)...I would occasionally have a breakthrough seizure occasionally, but, they occur more often when I am stressed out...While in the hospital in September my pulmonologist had me see a neurologist and have a new EEG done...My pulmonologist said that on top of having COPD that I have interstitial lung disease and he believes that it's a very rare side effect of the Dilantin and he took me off of the Dilantin and put me on Keppra 500mg twice daily. Since that time I have had numerous seizures...On a normal basis I have grand mal seizures...However, the last 3 have been seen by my 8 year old granddaughter...The first two she described to me made sense to me when she described how I scared her...The last one I had in front of her, she told me that I was just talking all kinds of nonsense and she thought about waking up my husband...I told her that if anything like that ever happened again, she is supposed to go and get her grandpa...I had my normal after seizure effects, tired, sore, confused, and memory loss...I would like to know how many others have had a change in seizure activity (like instead of the thrashing of a grand mal to just being completely rigid or talking nonsense)??...My seizures are coming more often and they seem to change from the ones I have been having since 1995...I a, going to follow up with the new neurologist in the first part of May.
For the first time after an EEG, I got a terrible migraine headache and no, I don't have auras or any other preseizure quirks or signs that a seizure is coming...I have also noticed that the seizures are getting harder on my body and it takes me longer to get back to being myself...has anyone else experienced anything like this??...Any and all feedback is very much appreciated, thank you in advance for reading and responding with your experiences.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline