Seizures and Hospital Visits

Hi Everybody, Sorry so long with the update but I have been in and out of the hospital. I went to Thomas Jefferson University Hospital in Philadelphia for an Epilepsy study. There they put me in a video monitored room for 5 days. I was on 1250mg of Keppra XR and 100mg of Lamictal for some time and I was still getting numbness and tingling on my right side. So as soon as I was all checked in the team of epilepsy docs decided to drop my Keppra from 1250mg/day to 750mg/day. Well I was fine for 5 days. I had all these electrodes pratically crazy glued to my head for 5 days of EEG monitoring. Everytime I would get a numbness and tingling on my right side it did not even register on the EEG as seizure activity. So for 5 days nothing happened. The docs choked it up to that I was having such minor seizure activity that it would not even register on the EEG therefore I was not a risk for getting tonic clonic seizures (grand mal seizures). The last day they dropped my Keppra XR from 750mg to nothing and decided to increase my Lamictal XR from 100mg/day to 200mg/day. I saw the logic however I expressed my concern by telling them that I was very sensitive to medication and that I would prefer to be weaned off of the Keppra XR slowly. Well that request fell on deaf ears.

So I was discharged on Tuesday. Went to work the next day. Felt fine all morning. Then in the afternoon I got this really sharp pain where my tumor was. It only lasted for seconds but it was exruciating. Next came the shakes. They were absolutely terrible and then I couldn't walk right. Well someone drove me home from work that night. I wasnt about to get behind the wheel. So finally it is bed time and I go to sleep. Well at 4 in the morning I open my eyes to my fiancé's terrified face over me saying, "Babe! You just had a major seizure". All I could do is stare at him. I was so bewildered. He called 911. He said I was Karate kicking, foaming at the mouth, jerking around and my eyes rolled back in my head and it was all only for a minute at most. I remember nothing of the actual seizure. I became extremely nauseous and pale. My blood pressure dropped to some ungodly number like 70 over 40 or something like that. I was pale like a ghost. So I was rushed to the local hospital in an Ambulance. When I got to the hospital they gave me some Keppra and I started to feel better. So I was discharged that same day from the hospital.

So I get home and am resting on the couch. The phone rings. It's my epilepsy doc at Thomas Jefferson Hospital and he says that they got the results of the MRI I had on the last day that I was there. He said there was some swelling where the tumor was removed. He was very concerned and wanted me to come back and check myself in the ER for an MRV. An MRV is like an MRI except it is a lot shorter duration and it looks at the veins in the brain. Anyway it turned out that my MRV turned out fine. Some neurosurgeons looked at the MRI and said that it was fine and not uncommon for people that have had tumors removed. So they told me to go back on the Keppra XR 1250mg/day and continue the Lamictal 200mg/day. I was discharged last night. By the way, TJHospital in Philadelphia is over an hour away from my house in NJ.

Anyway, I have an appointment with my neurosurgeon on Tuesday to schedule my 3rd surgery in January to get the plate (get my soft spot covered) put back in my skull. It is a plastic plate they are going to put. I cant believe this is what my life has become. I am terrified. I never want to experience another tonic clonic again, especially since my blood pressure drops so low.

But I feel that God is looking out for me because I could have had a tonic clonic seizure while driving or even while working or anywhere; but instead I had it in the safety of my bed while sleeping. Same with they very 1st episode that started it all, that prompted the brain surgery when the right side of my body stopped working for me, I could have been anywhere but I was in my bedroom both times! God is Good!

Sometimes I am terrified that I am not going to make it. But I am a fighter, and life is worth fighting for. I will get through this with your, my families and Gods support.

Thanks for listening.