Community Forum

Grey Matter Heterotopia

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

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)

 

 

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

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.

Hi Nic,

Do you have anything else besides the seizures...numbness, tingling, deja-vu, dizziness, slurred speech, confusion, loss of coordination or what exactly are your seizures like? What about memory loss?

One of my seizures is like a mini stroke, where my left hand and leg will got dead, and sometimes it 'pounds'. It can last from seconds, upto about 15 minutes. The other seizure, is a huge panic attack. Ill suddenly get a fright for no reason, and my eyes will start darting around the room. Ill hear people talking to me, but I wont register what they are saying. It usually only lasts about 30 seconds to a minute, but ive had one which lasted eleven minutes before.

I also hav a really bad memory, which is REALLY annoying!!

Hey nic nack, thank you so so much for your insight.  My son has "episodes" as I call them - but they are very short.  It's usually when he gets anxious, so it leads me to believe it's like your panic attack. 

 When you talk about your bad memory, is it short term memory or long-term?  Also, if you don't mind answering this type of question, what age range are you?

 Thanks

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!

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.

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.

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 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.

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).

Hi, I moderate an online worldwide group of families affected by perieventricular heterotopia. We currently have more than 80 families supporting each other. The group is comprised of adults with heterotopia and parents of children with heterotopia.

The group is on Facebook. You can find it by searching x-linked periventricular nodular heterotopia (not all members have the x-link form but my family does, or you can get more info at www.pvnhsupport.com

Yolaine

I am 25 an have bilateral periventricular nodular heteratopia which is also grey matter heteratopia. I started having seizures at 15 and now have uncontrolled epilepsy. The meds I take and seizures have affected my memory and thinking and make me so feel stupid! I have been in the epilepsy monitoring twice and have a WADA test and angiogram in one week because they are now wanting to do surgery on me so they have been doing all the pre-surgical tests. I get the depth wires(electrodes) next. The only thing I am freaked out about with surgery is losing some of my vision and not being able to drive. I can't imagine that. I was told that this is X-linked and if I was to have kids if it was a boy it would probably be mentally retarted so this is not a risk I want to take. This is something you are born with but doesn't always show up until you are a teenager. some people have it much worse. I have had some crazy experiences and the meds themselves have side effects that are not pleasent.

Hope this helps. 

Mine is subepydymal, non-surgical. It is also genetic but I have a 16 year old son and he is fine. My nephew is mentally disabled and they are currently having him tested to see if he has the heterotopia. From what I have learned so far is that it can be carried by people and they wouldn't know and then there are those of us that show that we have it. My medications were just upped and I am still having episodes. I don't drive anymore because I get confused and have gotten lost a few times. Have faith in the surgery, I do, it'll be okay.

To the ones looking into disability. Let your doctors know before you apply that you are going to. On the forms you fill out put every detail of information about your seizures and how you feel during the day. Make sure you put how often you are having them. I had brain surgery because of the epilepsy mcitp training and had to go on disability after. The seizures did not stop and had memory loss from the surgery. I was employed when I had the surgery but after lost my job. I had not had steady work or pay since the seizures started when I was 21 I am 35 now. As long as your doctor helps you and you have all your information you should get disability approved. If not appeal over and over again! I applied for disability in November and it was approved and started it in July of the next yr. Dont ever stop fighting for yourself! I have learned that the hard way but now with what I have taught myself I go in well informed everywhere I go. Good luck to you. a+ certification

I am 19 Years old and I have grey matter heterotopia.
I remember when I had grand mal seizures at the age of 2, It was after I had a car accident and suffered from brain trauma, that I later on began having seizures in my sleep(at 2 years of age). I was put on liquid tegratol to prevent them. It seemed to work. Then I was weaned off at the age of 7 when I stopped having them.
But Then in mid 2006 at the age of 13, my seizures came back. Except this time they were in the form of absences, and hallucinations.
I didn't know what was wrong with me at the time. It was only till the next year that my mum and dad or anyone else noticed something was wrong. The first time they saw me having a seizure was when my dad was sitting at the TV watching the news about a guy who suffered from a bad kind of epilepsy. I was looking at the TV and staring at it blankly, and then my grandma called, my mum asked me to come over and talk to her. So I walked over and started talking normally, next thing I remember my vision went black. It was like I passed out. I couldn't hear or see anything. Like I went to sleep. Then I became conscious. I was confused and looked up to see my dad holding me and mum was beside him, he asked me if I was ok. Mum and dad stood there and instantly knew what might be wrong with me. They told me that I was standing there with the phone to my ear slurring words and staring blankly.
my dad took me to get an MRI and EEG done. It turned out that I was having seizures based on the results from the EEG. But the MRI showed nothing.
I was put on Tegratol, and it never really prevented the seizures completely. I was struggling at school more, ever since the epilepsy came back. I became Depressed, and found it too had to go though with school, especially in year 11 and 12. I failed year 12 and haven't been able to forget how bad it was for me.
I thought the Tegratol wasn't working properly, so I asked to try and take another drug. My Neurologist put me on Epilim and It was still not working. I was still having absences and the drugs made me feel crap. I then asked to take a different drug because the epilim wasn't working properly.
So I was put on Keppra. A new drug that the Neurologist said was a great new drug and would help improve my memory.
Not true.. It is worse than the other two and I don't know why I don't get a liver function test done and check the medication levels.
I was put on an anti depressant and after one week of taking it, I felt an aura(felt fits about to happen). I then started having fits. I was home alone and I had to walk down the stairs to try and call someone to take me to the hospital because the fits were happening every 15-30 seconds. I timed when I could walk down the stairs when I wasn't having them and wrote down what was happening to me. My mum was at the hospital with me and then my sister came. The seizures were dizzy spells, but really bad ones. I couldn't function properly, I couldn't walk by myself I could drive or walk down the street it was to risky. I was also having absences but they weren't as bad as they used to be.
That was this year. I was taken off the anti depressant and went without them for a while. I had major depressive disorder. and was another weight on top of the epilepsy.
I went on another anti depressant, but came off it because I wasn't feeling well again. It lifted my mood but made me feel even dizzier.

When I had the MRI on the 1st of this month, It showed grey matter deep in my brain. This is what the report said;
There is a small focus of heterotopic grey matter in the deep white matter of the left frontal lobe adjacent to the head of the caudate nucleus.
It has been there since birth.

I have memory loss, vision impairment sometimes, difficulty speaking clearly, dizzy spells, absences(blank stare, sometimes tilt my head to one side) and I cannot exercise, not even walk otherwise I feel like I'm going to collapse. I feel worse after exercising.

I hate living with it. I don't wan't to get a job because of my memory and speech.
I wish there was some more information on heterotopic grey matter. Does it spread? Can the seizures be controlled completely?

I was just diagnosed last year at 43 yrs old. I've been having symptoms for years but brushed it off since I have a rare congenital lung/heart disability. I began having Parkinson-like and drop mal seizures about 5 years ago. I am now having more stroke like symptoms. They believe something is also wrong with my brain stem and it's connected to my heart/lung situation. I am doing balancing exercises (as my left side is a lot weaker and I have the partial seizures). Also, doing brain games and have an oxygen machine at all. Has any of yours gotten worse with time? I know I read it does not progress but I think with my age and my body changing... symptoms have changed. Again, though, I have other medical complications. Seizure meds don't work but sometimes Benedryl or low dose Valium help. I was just doing the balancing ball for exercise. Other times, I have to be carried across the room. I am trying out different things to see what helps.

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