I woke at 4:35am on 2/20/08. The left side of my face was twitch very violently, then the right side. By 4:40 pm, it did the same thing. At 7:30 that same evening I had 4 violent episodes which involved both arms and legs in a lifting sort or stiff marching. My family thought that they were seizures and called an ambulanc. They too thought they were seizures but could not figure out how I was able to talk to them during the episodes. The ER sent me home to follow up with a Neurologist. I had 3 more episodes that night.l I had a MRI and an eeg done while having 3 episodes hooked to the eeg. I was given klonipin and sent home. Well at home I had 5 of these episondes so my husband to me to anther er and no one knows what the problem is since all of my test were negative. One DR went so far as to say that I was faking them. I am not and I am a very healthy 46 yo woman who just want answers so that it can be cured or so that I can learn how to live with it. I fear the worst. I drive 85 miles rt daily to get to work...I am the sole bread winner in this family. Please help me or lead me to the right people.
I'm really sorry that you are having such difficulty. I would definately get a second opinion from another neurology practice. I wasn't sure if you found out the results of the mri and eeg. The eeg usually shows if there was seizure activity at that time. There is also something called qeeg which is like brain mapping but not sure exactly how that works. Please continue to talk with a specialist and try to find out what may be causing these problems. Hoping that you get some answers and resolve soon.
My husband has a condition called conversion syndrome also ptsd he has convulsions/ fits every 2 days. We dont get much support and I have been trying to get as much information about this condition as I can. I would also love to be able to chat to other people who would understand how we feel .
Thank you for your reply. My husband is due to go to Queens hospital in London for further tests, this may be for a six month period. This all started in September 2007 when he was admitted to hospital with a smilulated heart attack he is 34 years old, he was treated for this, then 4 days later he started to have the convulsions, he has had every test going as the doctors had no idea what was happening. He spent a period of 16 weeks in hospital then they moved him to a mental health hospital for a further 5 weeks to date he is still fitting which effects his daily life in every way . Walking is a big problem he has to have someone with him at all times, I would love to find out more or chat to other carers or people with the same condition or if someone has in fact recovered from this illness.
I have a very similar problem. I wake up having conscious convulsions also with legs kicking out and arms seized up. I had an eeg done that came back normal. My neuro says the convulsions are due to overstimulation in my spinal cord. I am currently being tested for suspected mitochondrial myopathies; a rare disorder caused by mutations on the mitochondria. The convulsions are just part of the issue. I have severe spasticity in my legs, decreased hearing in one ear, the early stage of type 1 diabetes (a slow onset), bowel problems, drooping eyelids and eye problems, writhing arms when I stretch or tense, and palpitations.
My convulsions occur much more at night than during the day, although they happen during the day too. I take baclofen, an antispasmodic, to help control both the convulsions and the spasticity, although I still have both of them since I can't handle the side effects of the meds well and am on a lower dose than necessary.