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Grey Matter Heterotopia

Sat, 01/30/2010 - 19:28
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

Re: Grey Matter Heterotopia

Submitted by Nic_nack on Wed, 2010-02-03 - 10:53
Hey! Thats no problem! sounds like your son has the same as me. Im 22, but as I said in the first comment I left, I wasnt diagnosed until I was 15. Ive found that the triggers for my fits are tiredness, being anxious, or stressed! And as for memory loss . . . . What a pain! Haha! I can tell someone something, and about 10 minutes later ill have forgotten iv told them, and tell them again! And it always seems like I remember the stupid little unimportant things, and forget the really important things!

Re: Grey Matter Heterotopia

Submitted by Aleemah on Fri, 2010-02-05 - 01:27

I am so glad to have found this site, my 9 year old daughter has just been diagnosed and i was on the internet trying to get as much info as i could before seeing the Neurologist.

My daughter only has mild partial seizures and so far have only been 12 months apart, my main questions are can it worsen with age?  Can it be affected by the onset of higher hormone levels? (puberty) was she born with it? and why did the seizures only start after she fell off a wall at school and landed on her head ending up in hospital with concussion?

Maybe won't get all the answers but am interested in the anxiety attacks, my daughter was put on homeopathic medicine after she was continuously bursting into tears over the unknown , it worked for a while but we still have episodes of crying when she is unsure what will happen at school etc.. Anybody have that sort of anxieties.

Thanks for sharing, i am not so worried about it all now.

I am so glad to have found this site, my 9 year old daughter has just been diagnosed and i was on the internet trying to get as much info as i could before seeing the Neurologist.

My daughter only has mild partial seizures and so far have only been 12 months apart, my main questions are can it worsen with age?  Can it be affected by the onset of higher hormone levels? (puberty) was she born with it? and why did the seizures only start after she fell off a wall at school and landed on her head ending up in hospital with concussion?

Maybe won't get all the answers but am interested in the anxiety attacks, my daughter was put on homeopathic medicine after she was continuously bursting into tears over the unknown , it worked for a while but we still have episodes of crying when she is unsure what will happen at school etc.. Anybody have that sort of anxieties.

Thanks for sharing, i am not so worried about it all now.

Re: Grey Matter Heterotopia

Submitted by brittnyh on Fri, 2010-02-05 - 05:27
Heterotopia is something a person is born with. For me, I did not develop seizures till my early 20's. There were no signs at all when I was younger. Mine seems to get worse the older I get. It is such an unknown thing and each case can be so different. We all seem to have the same type of problems but in different degrees. Panic attacks are all part of it. Be sure to consult a neurologist about the crying and such. I have these same problems and I take meds for anxiety and seizures. I would recommend also that you have your daughter see a psychiatrist or if she could have someone to talk to in a "panic" situation. It always seemed to help me when I had someone to talk to, not to talk, but to listen to me share my fears and worry with. Kinda like having a sounding board...just someone there.

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