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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 Aleemah on Sun, 2010-02-07 - 05:01

Thanks Brittnyh,

My daughters crying is not really an issue at the moment as i have taught her to deal with things better, just wondering if any one else had it.   The hospital rang and said i cannot get in to see the Neurologist for maybe 4 months but they want to start her on Carbmazepine any way, i am not wanting to put my daughter on any drugs unless completely needed and a 12 month apart, 2 minute partial mild seizure does not make me want to medicate her for 2 years.

I am getting a second opinion and off to our homeopath in a couple of days.

Thanks Brittnyh,

My daughters crying is not really an issue at the moment as i have taught her to deal with things better, just wondering if any one else had it.   The hospital rang and said i cannot get in to see the Neurologist for maybe 4 months but they want to start her on Carbmazepine any way, i am not wanting to put my daughter on any drugs unless completely needed and a 12 month apart, 2 minute partial mild seizure does not make me want to medicate her for 2 years.

I am getting a second opinion and off to our homeopath in a couple of days.

Re: Grey Matter Heterotopia

Submitted by tonialpha on Fri, 2010-03-19 - 16:15

Thanks Brittnyh and Allemah,

I am grateful to read your notes.  I had one or two seizures when I was 3,  my mother thought it was do to heat or being in the garage to long because of the odors . 

When I went into puberty,  the seizures were more evident and they were 2-3 per month.  When I was in high school it was noted because of pressures of studying and takinig test along w/ menstral cycle the seizures were more often in the month.  My mother felt it was pressure and that I did not need to see a doctor.  When I was in 10th grade I had a status attack and the school asked me to leave until my health was better.

I was on a regime of natural foods via a nutrionist and I did feel better but the seizures lessened.  During my time in College and I was working, the seizures were more evident and I had additional auras that I was having. 

I had spots in my eyes then nauseate, then visual sights would increase in size and then was nauseated,  then I had deja vu, I had trouble speaking at times, I also would get confused and did not realize people were talking to me.  I had 3 additional periods of status during that time.

I had 2 brain surgeries to control the seizures.  I questioned why am I not under control.  The Neurologist told me it was a difficult surgery because it was near my speech center.

I had status 2-3 other times.  Moving, changing of College and breaking up w/ a boyfriend were the ones I recall.  I now am raising teenagers and they are generally good teens, the stress of raising them sends me over the edge.  Walking outside relieve the stress but when I am walking I will get a cluster of seizures and the Fire Dept EMT's basically no me.  They do not take me to the ER because I do not want to go, unless I am totally unconsious.

Recently I found out it was a Periventricular Nodular Heteropia.  It happens during gestation, Epileptologist had an MRI done last year and they found this information out.  I was grateful to find it was at the 4th ventricle in the brain and it was no ones fault!

I have had a VNS too.

Thanks Brittnyh and Allemah,

I am grateful to read your notes.  I had one or two seizures when I was 3,  my mother thought it was do to heat or being in the garage to long because of the odors . 

When I went into puberty,  the seizures were more evident and they were 2-3 per month.  When I was in high school it was noted because of pressures of studying and takinig test along w/ menstral cycle the seizures were more often in the month.  My mother felt it was pressure and that I did not need to see a doctor.  When I was in 10th grade I had a status attack and the school asked me to leave until my health was better.

I was on a regime of natural foods via a nutrionist and I did feel better but the seizures lessened.  During my time in College and I was working, the seizures were more evident and I had additional auras that I was having. 

I had spots in my eyes then nauseate, then visual sights would increase in size and then was nauseated,  then I had deja vu, I had trouble speaking at times, I also would get confused and did not realize people were talking to me.  I had 3 additional periods of status during that time.

I had 2 brain surgeries to control the seizures.  I questioned why am I not under control.  The Neurologist told me it was a difficult surgery because it was near my speech center.

I had status 2-3 other times.  Moving, changing of College and breaking up w/ a boyfriend were the ones I recall.  I now am raising teenagers and they are generally good teens, the stress of raising them sends me over the edge.  Walking outside relieve the stress but when I am walking I will get a cluster of seizures and the Fire Dept EMT's basically no me.  They do not take me to the ER because I do not want to go, unless I am totally unconsious.

Recently I found out it was a Periventricular Nodular Heteropia.  It happens during gestation, Epileptologist had an MRI done last year and they found this information out.  I was grateful to find it was at the 4th ventricle in the brain and it was no ones fault!

I have had a VNS too.

Re: Grey Matter Heterotopia

Submitted by surlywaitress on Tue, 2011-03-15 - 20:12

I'm 35 and I have it too.Since birth. It's so interesting that everyone here seems to be around 15-16 during onset of symptoms ( a seizure ) and seem to have the same type of sensation - numbness/stroke like behavior on the left side of the body. I JUST found out that I have it as I had a seizure when I was 15 but they didn't have an MRI available, so for years no one understood what the issue was and no one understood me when I tried to describe the left sided numbness. For years I had the numbness - from age 15 to 32 (which I now know is a partial seizure) and then at 32 had another grand mal seizure. I still have partials on and off and I'm currently 50% of the way through a switch from Dilantin to Lamictal to try and get them under control.

It SUCKS! Its surprisingly scary and since I am no longer able to drive with any reliability, I am in the process of changing jobs as my current job involves some driving. (which is not going well because I feel like crap from being on both Lamictal and Dilantin so by the end of the day I could care less about job searching).

I'm 35 and I have it too.Since birth. It's so interesting that everyone here seems to be around 15-16 during onset of symptoms ( a seizure ) and seem to have the same type of sensation - numbness/stroke like behavior on the left side of the body. I JUST found out that I have it as I had a seizure when I was 15 but they didn't have an MRI available, so for years no one understood what the issue was and no one understood me when I tried to describe the left sided numbness. For years I had the numbness - from age 15 to 32 (which I now know is a partial seizure) and then at 32 had another grand mal seizure. I still have partials on and off and I'm currently 50% of the way through a switch from Dilantin to Lamictal to try and get them under control.

It SUCKS! Its surprisingly scary and since I am no longer able to drive with any reliability, I am in the process of changing jobs as my current job involves some driving. (which is not going well because I feel like crap from being on both Lamictal and Dilantin so by the end of the day I could care less about job searching).

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