My husband has this too. When he has seizures they are almost always grand mal. He makes noises also. I wonder if he can feel it, because he yells out in pain almost and cries really hard. One time he yelled the word "no" really loud. But his seizures are pretty violent and the worse they are the more noise he makes.
It didn't occur to me that he might be able to hear me during one until I read this thread. Next time i'm going to try to talk to him.
He is also sore for days afterwards, and has all kinds of rug burn, scrapes, bruises, unexplainable marks from just thrashing about.
Like another poster, they cant find anything wrong with him. They don't know why he has it or how he can rid it. But they do know he has tonic clonic.
Another thing, he was diagnosed with it at age 25. He has never had a seizure in his life, and at age 25 he had one... Was taken to the er, and they diagnosed it. He's had it ever since. He hates it as anyone would. I do what I can to support him and make him feel loved. And not to think about it so much.