My apologies if my english is a bit miserable. I'm not English.
I'm 21 years old. My attacks started when I was 14. These attacks were small. I was just confused, talking gibberish. At the end I would fall unconscious.
When I was 16 other attacks started. With those attacks I was shacking, specially in my legs, but also in my arms. My eyes turn away, I start breathing strange, turn blue (because of the breathing.) I chew on the inside of my cheecks and tongue. The attacks take 45 minutes without medication. Those attacks stayed and are still going on. Soon after the second attack they gave me keppra. After giving me the medication they did a MRI. The doctor thought it was epilepsy. They were certain about their conclusion. The thing is that this hospital didn't have much experience with epilepsy. It felt like guesswork to me.
In the years there were still a lot of things unclear. How much attacks do I have without medication? They gave me so fast after two attacks Keppra. I wasn't even certain if it made a difference. What kind of epilepsy do I have? Is this the right medication for me? With medication my attacks would still come around the 4-6 months.
Last year I went to a new doctor, one who is specialized in epilepsy. I did this because I wanted to know more. He advised a EEG and psychological test. I decided to do it. In december I did the EEG and the psychological test. I didn't get a attack during the EEG. In Januar I got the result, that it was not epilepsy at all. He couldn't know for certain untill I had a attack during a EEG. The doctor was 99% sure. He thought it was PNEA. In the time the attacks started my life was a bit of a mess, so after thinking about it I thought yes he might be right. So I decided to stop with my medication and start working on it with a psychologist.
I just finnished the treatment with the psychologist. Thing didn't go like I thought it would go. At this moment I am terribly confused and afraid, that it is epilepsy after all. Since I am completely without medication (since it's also out of my system) the attacks are back every week and stronger just like when I was sixteen. The shaking, the strange breathing, froth and so on are back. But these attacks are a lot more violent. Everytime I wake up bruises are on my knees and arms. I also don't always feel them coming. They come almost every week, mostly on thursday evening. The attacks take 45 minutes.
I also doubt if they are PNEA because I don't have those attacks when I'm stressed. I noticed that the attacks don't come on the most critical, stressed moment. They always come when I'm relaxed or relieved.
I am asking here for help because I'm scared my doctor will just not do anything about it. I would like to ask to all of you what you think and what you advice me to do.
Thanks for the help and advice.