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Brother

Tue, 08/25/2015 - 11:22

Hello, I am here for my dear brother.  I have gone through all the blogs and I just thought I would start my own to vent and tell my story.  Not so much get replies but I do welcome any....

My brother was 21 years old when he had his first seizure, he is now 43. In the begining, he was having grand mal seizures but they were once every couple of months.  He was on dilantin and had multitude of radiology test and everything came out fine.  A few years ago he has changed neurologist and now he is also taking different anti-seizure medications.  At the same time his seizures have evolved...its hard to explain.  He is now getting small seizures that are 1-2 minutes long.  He would lose consiousness and fall to the ground if he is standing.  He has hit his head mutliple times on the ground and had cuts and large egg shaped bumps on his head.  He also had a couple of surgeries on his knees because of the ackward way he falls.  He also sometimes gets these small seizures (1-2 minutes apart) lasting 2-4 hours.  When its done, its done, he will get up and act like nothing has happened.  We are assuming since they have changed his medications and is now not taking dilantin his seizures has changed also.  Is that possible?  My brother gets the single small seizure once every couple of weeks and i can say he also get the "cluster seizures" several times a month.  

He has had a VNS implanted back in 2004 and at this time this is not helping him at all.  For the past 2 years his neurologist was trying to have my brother go through a test where he was admitted and when he has a seizure they will pump contrast into him and do a scan.  They have tried this several times and it was just this year that they have discovered that one part of his brain in the frontal lobe has not fully developed.  This is what is causing his seizures.  They suggested that he would go on a high protein diet.  He is not complient with this and if it wasnt for my mother and sister he wouldnt be complient with his medications as well.  

My mother is retired and is 75 years old.  She is over protective of my brother and doesnt like him to do much because she is worried he will have a seizure and hurt himself.  My brother sometimes gets violent and would yell and throw things at my mother when she tells him to do somthing to prevent a fall.  He has lost all of his friends through the years because of his disease and slowly but surely is losing his social skills.  He is depressed and all he does is sleeps, eats, and goes to bed.  My family is really feeling the strain.  Yesterday he became violent and pushed my mother to the ground, she is okay Thank GOD.  Everyone ran out of the house in order for him to calm down.  This is the worse episode that he has had and when it was over he was very sorry for his actions.  I have promised my mother when she is gone that I will take care of him.  I love my brother very much and I hope there is some miracle drug or surgery that can help him have a normal life and a better quality of life.  

I read a lot of stories on this website and I feel for everyone of you.  I hope the best for you and your family.  God Bless.  

Comments

I read your post and do know

Submitted by just_joe on Wed, 2015-08-26 - 18:29
I read your post and do know some of the things you posted.I am the person with epilepsy and my posts will come from my own experiences.I took dialntin along with other medications and it did help control my seizures. While I only had 1-2 Grand Mal seizures I did have other seizures that were convulsive. So I do know about seizures and Dilantin.Once a person is diagnosed they may only know of certain seizures because those are the only seizures he has had. So if he had only had certain seizures you would think that he will only have those, When in reality he could have others you would not know about. For me I had a grand mal. I also had Petite Mal. Those were the ones people knew about. They didn't know about the weird feeling I got in my right hand. or the twitch now and then in that hand. Those too were seizures, Focal motor seizures. So I had the worst, the slightest and with focal seizures they can go in many places between them.In other words your brother can be having other seizures that you know nothing about only because he has seizure activity in different areas of his brain. Changing medications can do several things but not cause his seizures to change from one kind of another. The meds can control his seizures of help control them. If his seizures have gotten more frequent then he may need his dosage increased. A change in weight or a hormonal change can cause need for medications to be increased too.When you posted "sometimes gets these small seizures (1-2 minutes apart) lasting 2-4 hours. " what he is having is a cluster of seizures. Clusters do need to be looked at and there are medications that can be used to stop the clustering. I know I used to have them. After the first simple partial seizure I now take lorazapam which stops the clustering. Your brother isn't the only person that yells and does things .I have yelled many times because it gets frustrating at times when I think things are going fine only to have another seizure and have to increase meds. It can be a pisser. He yells because he wants his independence and wants things like you have be able to do things everybody else does without being watched and told what to do. I still have someone telling me to sit down if I am seen in a seizure. believe me that person hears me from time to time, Being over protective doesn't help your mother or your brother.Your brother need to be seen at least once a year and a person that is around him needs to go to the neurologist with him. That way the neurologist can see your brother and listen to him. He can also listen to the person(your mother or you) and he can find out things your brother might not know he is doing. He can then think of different medications ,dosages and even procedures that might help him control his seizures better.I hope this helps and your brother gets the assistance he needs.Joe

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