Ruth,
I didn't feel a thing during the EEG. Everything normal. No lapses in consciousness. Nothing. It wasn't until several months later that the neurologist said that I had an abnormal EEG and that I had partial complex seizures. Imagine my shock, being 61 years old, and out of the blue this diagnosis that doesn't make sense to me. The symptoms that I originally went to the doctor for are memory loss and trouble thinking of the right word or thought. The neurologist put me on Oxtellar ER 300 mg twice daily and after 2 weeks bumped it up to 600 mg twice daily. For the first couple days, I did have much clearer thinking, I could speak confidently, didn't have trouble with words and my memory was good. But then the side effects began. At first it was nausea. I had an another appointment and told the Neuro about the nausea, but he said that people never have that problem on the drug. I told him I would keep taking it and see what happened. At 600 mg, the nausea gradually turned into vomiting and I had no appetite. Then I started having paranoia. Then hallucinations, delusional thinking, I got a sore on my lip, hands were shaking, insides shaking so much it felt like I was vibrating. When I laid down to sleep, my chest got very tight and heavy, it felt like my heart was pounding, I felt raw fear and fearful thoughts. I kept thinking I was dying or having a heart attack. My husband kept trying to calm me down, but I even thought at one point that he knew I was having a heart attack but wouldn't take me to the hospital because he wanted me to die.
I had been trying to call the doctor for a whole week, but he wasn't returning my calls. I told the receptionist everything that was happening, but still no call back from the doctor. So I stopped taking the medicine because I'd hardly eaten anything. Then came withdrawal. The symptoms of withdrawal were like the side effects I was having, but stronger. One night I made my husband take me to the emergency room. I thought I was having a heart attack, because my chest was so tight and felt heavy. My heart felt like it was pounding and racing and I felt like I wasn't getting enough air in my lungs. But the nurses and instruments showed my heart rate was only slightly elevated and I had plenty of oxygen. I just THOUGHT that my heart was pounding and I couldn't breathe. My thinking was very exaggerated and delusional. Also, it seemed like my husband was bored and didn't care what was happening to me. And the nurses seemed like they were talking badly about me. Everyone's eyes looked scary and black - the whole iris looked black - and people seemed like they were angry. It was like hallucinations I think.
Finally they knocked me out with something intravenous and I fell asleep. After an hour or so, they sent me home. They told me I was having withdrawals from the Oxtellar and nothing else was wrong. I asked them if they thought I was having seizures and they said no. Still no word back from my neurologist.
The next day was Saturday and my husband took me to a walk in clinic. The doctor there said that I would need to dose down gradually off the medicine. He prescribed 150 mg. The following Monday, I went to my family doctor. The withdrawal was no better, so he switched me from Oxtellar to Keppra. But it didn't help the withdrawals and made me extremely sleepy, so weak I could barely walk and my legs and arms felt like I barely had the strength to move.
A couple days later, I went back to my doctor, he said that the medicines were doing more harm than good, so he told me to stop taking them. He made an appointment with another Neurologist, which isn't until January. It took 2 months for the withdrawals to completely stop. And I'm not on any seizure medicine. I'm back to having word finding problems and memory problems, but this is much better than the side effects if the horrible medicines.
To be honest, since I don't have lapses in consciousness, staring spells, etc., I have to wonder why the 1st neurologist said that I have partial complex seizures. Wouldn't it be simple partial seizures? Nakamova on here encouraged me to look up symptoms of simple partial seizures and I'm wondering if any of the following could be a seizure:
My ears ring all of the time. But all of a sudden the ringing gets loud for awhile, almost like someone turned up the volume suddenly.
Out of the blue, I'll feel fear or sudden sadness for no reason.
I sometimes get goosebumps - skin crawly feeling - on my cheek.
I can be somewhere and things look weird or unfamiliar to me. Then that feeling goes away.
Sometimes when people talk I can't understand what they are saying. I know the words, but I can't understand the implication. (Or that might be from my pain medicine. I have neck/back injuries, fibromyalgia and arthritis all over from getting hit by a vehicle on my bicycle some years ago. I sustained a head injury in that accident.)
Sometimes my head feels very full and I can feel my pulse in it. This began right after the head injury.
Anyway, this was very long. Part of this is my story that I wanted to tell. Thanks for listening. If anyone has any more comments, I do appreciate them. People on here are so respectful. Being someone with so many health issues and chronic pain for longer than 10 years, I've heard it all!
-Peridot21