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Grey Matter Heterotopia
Sat, 01/30/2010 - 19:28Topic: New to Epilepsy.com
I am 35 and recently found that I have grey matter heterotopia. I am
currently on seizure meds that have made the seizures less harsh but I
still get them. I have memory loss, confusion, dizzy spells
(head-rushes), body numbness, tingling, vision impairment at times,
loss of coordination and difficulty speaking clearly. Although I can
live with these problems I would like to know other people with this disorder and maybe what they have done for treatment.
Comments
Charlottes Web oil
Submitted by Aka_zap on Sun, 2018-01-21 - 18:48
Charlottes Web oil
My 15 yr old was diagnosed in
Submitted by JenLynn on Sat, 2018-07-21 - 18:52
My 15 yr old was diagnosed in I think 3rd grade with grey matter heterotopia. He usually has 1 seizure a year, usually in the spring. When he has a seizure it's more like a stroke. His eyesight gets wonky, then his right leg goes numb, then his right arm, then he loses muscle tone in his mouth. Afterwards he's extremely tired and will often vomit multiple times. I have an extremely hard time explaining his seizures to drs and school nurses. Does anyone else have these weird seizures?
Julie, my son, who is now 25
Submitted by Jill Coleman on Tue, 2017-10-17 - 10:35
Julie, my son, who is now 25 has this exact same thing. It took years for it to be diagnosed! We found out 4 years ago what has been going on with him all this time. He has the exact same symptoms as your son! His seizures seem to happen more when he is sleeping though. Usually in the early early morning time. The medicine does not help my son at all. They more they up his dose, the more depressed he seems. Also, the side effects from the drugs seem to be more extreme the higher the doses. He has found a dose (on his own trial and error) that he can tolerate but he still has break through seizures. I am sorry you are also going through this. It's hard to see our babies sick and not be able to help. :(