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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
Re: Grey Matter Heterotopia
Submitted by brittnyh on Mon, 2010-02-01 - 19:04
I don't know how much help I could be but I will let you know what I know. Although I have had this problem for a long time, it was only recently diagnosed. From what the doctors are telling me there are many "problems" that can come from Grey Matter Heterotopia. I have been on anti-depressants most my adult life. I have social disorders - not a big fan of crowds. There are rage issues where I get almost uncontrollably angry. My body has tremors - I call them my Katherine Hepburn moments.. There is no rhyme or reason to the feelings and what my body does. There is not one trigger. There is no fix for the damage done to my brain but they can try and lessen the seizures with meds and I see a psyciatrist for my mental health. My friends son has what your son has and I know that it is difficult, I couldn't imagine dealing with a child with both. I would recommend getting the treatment for the aspergers first. It takes a lot of mental control to deal with episodes. Consult a neurologist and always get second opinions. The heterotopia could be a cause of the aspergers and not an additional problem. Double check the diagnosis. I know my brain is messed up and I spend a lot of time confused then frustrated. If you have any specific question, feel free to ask. Thank you for contacting me. Later. Brittny
Re: Grey Matter Heterotopia
Submitted by Nic_nack on Mon, 2010-02-01 - 19:42
I am 22, and iv had grey matter heteratopia since birth, although it was only diagnosed when I was 15. It is also still totally uncontrolled.
As a child, I used to wet the bed frequently. I was referred to the enurisis clinic, where they tried everything to control my bed-wetting, but with no luck. Then the 'panic attacks' started. I went to the doctor, who sent me for an MRI. The results wer sent back to my parents because i was only 15 at the time. I have epilepsy, caused by grey matter heteratopia. We only found out years later that its the whole right half of my brain thats damaged, not just the front right temporal lobe as we were first told. That explains why I have two different types of seizures!
Ill be happy to answer any questions anyone would like to ask.
Re: Grey Matter Heterotopia
Submitted by reillymom2boys on Mon, 2010-02-01 - 17:42
My son started having seizures about 1 1/2 years ago. He was diagnosed with gray matter heterotopia. He is also aspergers syndrome, so it's hard for me to get him to explain his feelings physically and emotionally.
I am VERY interested in hearing more in detail about your symptoms as this would help me TREMENDOUSLY in understanding what may be happening to him daily.
Any information you could give me would be GREATLY appreciated.
Thank you so much for your post and I look forward to hearing your responses.
Regina (A mom in need of insight)
My son started having seizures about 1 1/2 years ago. He was diagnosed with gray matter heterotopia. He is also aspergers syndrome, so it's hard for me to get him to explain his feelings physically and emotionally.
I am VERY interested in hearing more in detail about your symptoms as this would help me TREMENDOUSLY in understanding what may be happening to him daily.
Any information you could give me would be GREATLY appreciated.
Thank you so much for your post and I look forward to hearing your responses.
Regina (A mom in need of insight)