my brother needs help, possibly simple partial seizures
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Almost 4 years ago I was diagnosed with partial non-convulsive epilepsy. As a child I was thought to have had turrets, but the turret like systems cut back at 8. I also had a weird form of sleep paralysis I mistook for a repetitive nightmare for years, at least once a week. Right before that stopped at 17 I was having it every time i would wake up from a nap. The deja-vu began to happen at least once a day as soon as the sleep paralysis went away right before i turned 18. The panic attacks, which mimicked a migraine but were followed by dread and fear (later found to be partials) started when I was 17 but I thought they were panic attacks for 5 years untill an MRI revealed a gray matter heterotopia at the left and right temporal and occipital horns (ventricles). My doctor isnt real specific with his answers, and tells me not to research so much, but what else other than seizures would this cause or alter, and how rare is it for a grey matter heterotopia to extend from one horn to another? Mine are located at the left and right temporal and occipital horns, extending from the temporal horn into the occipital horn.
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Recent Comments on this Discussion
Criscobr:
I'm not sure how to answer your question, but my 14 year old daughter was just recently diagnosed with Gray matter heterotopia in the right parietal region and our Dr pretty much told us that the brain compensates pretty well for the disruptions that she has. He didn't seem to think that she would have problems with the location of the gray matter, other then the seizures that she has. She has partial seizures with generalization, which is left arm numbness/loss of feeling. Do you have these feelings too? She took Keppra for 2 weeks without help, so now is on carbamezepine and doing well for the past 3 weeks. Are you on meds? Hope all is well for you.
I am currently on my second go-round with Dilantin. I was on carbamazepine (which worked very well), but after 5 months I began developing rashes and pin-point bumps caused by an allergic reaction to the carbamazepine. My seizures are preceded by a weird feeling of deja-vu, which is followed by this horrible feeling like my head is about to implode and the fear like something horrible is about to happen. Luckily with the meds I only get the deja-vu feeling now without anything following it.
I am certainly glad that the dilantin is handling things pretty well. I am pretty excited to know that there are even meds in this world to help people with seizures! Amazing to me!
When you get the deja vu, do you have partial seizure each time, or just deja vu?
My daughter has had 3 times this week where she has felt lightheaded, but no partial seizure follows. Before the carbamezepine she would have light headed feeling, staring and then the generalized lt arm pain. So, does this mean it is working, or only partly. Side note, this week happens to be her cycle, so we are noting that for the neurologist. We will see him on June 12th, so will let him know what we have tracked as well. I hear women have that problem, so will keep an eye on that.
To date, you are the only person I have come across with gray matter heterotopia of any sort. Boy you and my daughter are special kinda of people :) in a good way of course!
Take Care,
Nicole
I still get the deja-vu every once in a while, but it is rarely followed by the migrainish feeling that used to follow it. I think it just scares me more now that I know they are seizures. I used to think the deja-vu was fascinating, untill the horrible feelings started to follow it. I actually started thinking my dreams were coming true because of the deja-vu feelings. That is untill I learned it was nothing but seizures.
Criscobr:
I guess i still look at it like Deja-vu is a gift! It is your way to have security knowing that your seizues are nothing more then an insight to the future, rather then a grand mal each time! Just a different kind of gift.
Over the last week or so, my daughter has talked about a couple light headed episodes and visual disturbances and we wil be seeing the neurologit in 2 days, so we will see what he says. I am just thankful they are small partial type instead of grand mal type.
do you still get the overwhelming head imploding kinda feeling, or has that gone away now too? Hope it has! Ok, through this website and reading on one of the topics, I found 3 more people with the Heterotopias, 1 child and 2 adults. They range from surgery to medication and controlled. I guess it all depends on location and how well brain compensates.
How old are you? male/female?
Good Luck and maybe we can get a group up for Gray Matter Heterotopias since I haven't found much research either. Goals for the future.
Take care,
Nicole
I am 27 and male. No, I don't get the migraine feeling anymore. However I still get deja-vu occasionally. I am now on Lamictal XR, which seems to be working.
My daughter is 11 years old and has been diagnosed with Grey Matter Heterotopia at 5 months old. We have tried several medications to keep things under control but are having a lot of difficulty keeping things calm lately. She is currently taking Phenobarb, Carbamezepine,Topirimate, and Zonisimide, for a total of 20 pills a day. We have seen several specialists in hopes of helping her seizures but I know hormones now have a big factor in it too. Her Pediatrician thought by trying Seasonuiqe it would maybe surpress the hormones enough to calm things down. She has been on it for 1 month and it is suppossed to slow it down over time but it seems to have not only made her periods worse but, it also made her acne worse as well. She is also having mutiple small seizures weekly and this has not helped at all.
I talked with her Epileptologist about all the activity but he stated this last time that it is a very hard thing to control and they really don't know a lot about it other than to keep trying different medications to help supress the activity. I am just to the point of frustration as I hate to see her repeatedly go through this. We have already tried almost every kind or combination of meds with no long term success.
I have researched this over the years and understand that for her it was a freak birthdeffect. It did cause her to have several Grand-Mal Seizures at first and as she got older thoses have lessoned to about 1 a year however we are now faced with all of these smaller breakthroughs I call it, and Don't understand why no-one can seem to figure her out. She is on an IEP at school and I am very proud to advocate for her and help with educating her teachers, as they do not know much about Epilepsy in general.
I personaly am begining to think she is on too many meds and wonder if they are working against each other.
If anyone else has any other advice I would love to hear it. I only want the best quality of life for her that she so deserves.
Thank You,
Kathy
I have greay matter heterotpia aka: bilateral periventricular nodular heterotopia. I am 26 and started having seizures at 15. I have been on many meds and am currently on trileptal and zonegran right now. I am on such high doses and am still having seizures but the Doc can't put me on any more because he fears I will go 'toxic'. I just had brain surgery 3 and a half weeks ago and am still having seizures!! They removed my right hippocampus, right amygdala and were only able to remove part of one of the heterotopias which sucks. I guess I will have seizures for 3 months and hopfully after that it will get better, we will see. If not they said we will explore more options like a VNS. I am married but have no kids as I was told it is a huge risk and with this condition the have a high risk of mental retardation. I don't drive but do work. I am just recovering from this surgery and praying it worked. I also had the grids/electrodes a weeks before the surgery. Epilepsy is no fun but you just take it day by day.