I have been experiencing convulsion like episodes at night for a while now.
I fall asleep then i am woken up by a strong smell and taste. I start to feel weird and then my body stiffens and loosens in tiny jerks. I cannot speak, but I am aware of anything going on around me. My face starts to do things with out my permission, and my breathing is uncontrollable. I have gone multiple times to the neuro and i've been told that 'its in my head', 'see a therapist', or 'your faking'. And usually the point where each doctor tells me its not a seizure is when i tell them that im not unconscious during the episode. Ive had EEGs and nothing explains what is happening. I am on nuerontin, due to illnesses ive had previously that caused damage, and once they increased the dose, the symptoms stopped. Before they stopped, I was experiencing this 2-3 times in a 3 month period. Normally all 2-3 episodes would happen with in a 10 days period then nothing for months, and then again all over again.
does anyone have experience with this.
My husband has frontal lobe epilepsy and only has seizures when he is asleep. These can happen at night or during the day if he is taking a nap. He was in an Epilepsy monitoring ward at Jefferson Hospital in Philadelphia for 8 days. Fortunately, he had one of his seizures while I was in the room so the neurologist knew what they were looking for on the EEG. Most people have temporal lobe Epilepsy, so that is generally what they look for. His first neurologist thought he was crazy, but I had actually recorded one by the time we went to Jefferson Hopsital, so I was able to share that with them as well. He also has very vivid dreams that he thinks are real. He has not had the smell/taste sensation, though I understand some people do. He takes Vimpat and Keppra. I hope you have found some relief - you are not crazy!
Most people have temporal lobe Epilepsy, so that is generally what they look for.
That's interesting- I did not know that Frontal Lobe epilepsy isn't very common among people with Epilepsy.
I also have Frontal Lobe Epilepsy. My doctor never denied that I had Epilepsy, but sometimes told me that certain things I experienced were not possible. I don't have seizures in my sleep, to my knowledge, and mine are mostly under control now, but I used to have pretty bad ones when I was conscious, including one that generalized before I lost consciousness, but my doctor told me it was impossible for me to be awake when I was having a Gran Mal seizure.
Anyway, I wonder if Neurologists aren't familiar with frontal lobe epilepsy and that's why they denied a couple of things I'd told them. I also had an extended EEG- four days in the hospital, and this was when they actually told me it was frontal lobe. I had been diagnosed with Epilepsy about 5 years before that and I think that was the first time they really knew where in my brain the seizures were coming from.
After reading this thread and reading more about frontal lobe epilepsy, I'm wondering if the experiences I have sometimes that I always thought were Sleep Paralysis is actually a frontal lobe seizure. One time I looked up the link between sleep paralysis and seizures in general and most things I read said there were no links. But when I just looked up sleep paralysis and frontal lobe seizures, a lot of websites said that a lot of frontal lobe seizures are mistaken as sleep paralysis. But it doesn't really list what a nocturnal frontal lobe seizure actually is like. It just says they are sometimes mistaken as sleep paralysis. When I have these experiences, I get woken up from a vivid dream with my whole body vibrating but being unable to move anything except my eyes. My ears hum really loudly along with my heartbeat which is beating really hard. and sometimes if I try really hard to move a pinky finger, I snap out of it. But sometimes I can't and I either start falling back to sleep again or am hallucinating because I think I get out of bed or turn over, but when I snap out of it, I'm actually in the same position that I was in when I was woken up by the episode. And these only happen around the period of time when I'm having the motor seizures I usually get during the time when I'm awake. I have catamenial epilepsy, which means I only get seizures when I have my period and in the middle of the month, and these are also the only times I experience what I've always thought was sleep paralysis. Is this actually a noctournal seizure?
If you dont mind me asking, what are the signs and symptoms your husband has during his seizures? I suspect my boyfriend might have this type of epilepsy. At night, he plantarflexes (like stepping on a gas pedal) his foot and it can get so intense that it will shake the bed! It always happens when he's on his back. Usually, he'll "wake up" and just roll over and go back to sleep. Secondly, he has vivid dreams. I can tell when he's having a nightmare and I've heard him talk in his sleep a couple times.
He actually just had a sleep study done at Jeff (we're from Philadelphia too) and we have a f/u appointment next week.
Vivid nightmares are definitely a symptom. First time I noticed the seizures he was napping in a chair and his head started jerking. I rushed him to the hospital where they verified that it wasn't a stroke. We ended up at Jefferson in Philly also at the recommendation of our Neurologist in VA. He was there 8 days. He had one seizure that I was able to mark for them. After we cam home, they did a study and found that he was having several seizures every night. I also took a video of one of his seizures so they could see it. He considers the "head shake" ones his worst, but he can also have jerking in his right arm and/or leg. The vivid dreams are also a sign that he is having a seizure. They don't always wake him up, but he always knows the next day - either because he is very tired of his muscles hurt. We are now in separate rooms because his vivid dreams can be way too real and he has hit me a couple times. I was also constatnly worried about him having seizures so I never got any sleep! Jefferson is a great place. They let me stay in his room so I didn't have to pay for a hotel. Dr. Sperling is very knowledgeable. Unfortunately, unless things have changed greatly, this type of epilepsy is pretty foreign to them - it's just not that common. I will tell you that if your boyfriend is diagnosed with this and put on medication, make sure he stays away from alchohol. The only seizure my husband has had awake was when he had a shot of bourbon. Scared him to death and he hasn't touched it since. Let me know how it goes.