Please Help ASAP! Son w/ epilepsy strange memory lapses mid conversation

Diseases & Conditions Epilepsy
1
Hi--
Thanks in advance for any help you can give me.  I've been terribly worried about my son lately.  He has epilepsy, focal in the parietal lobe and gets grand mal seizures.   He also is suspected to have either Wolff-Parkinson-White syndrome (sudden cardiac death) or a vagus nerve problem which causes him to faint, have extremely low blood pressure, cold blue reynauds like hands, become out of it, and also has severe ADHD.  He's on Trileptal 600mg bid and Adderall XR 15mg.  Without the Adderall, his circulation is crappy and he can't concentrate etc.  Right now he has had bouts of being really sharp and on the ball, exceedingly so, then memory problems, forgetting what he is saying while he is talking and saying that everything is too complicated, and then memory problem that involve going back in time and events out of sequence.  Today, on the way home from the doctors, right near the house, he picked up an envelope of medical records and said, "let's make sure we have everything to give the doctor..." and was acting as if we were going to the doctors, when we had just been.  I reminded him that we had just left the doctors office and he seemed to click in and I asked him if he knew where we were, and he said, near the house.  I asked him why we would be near the house if we were going to the doctors, he said that he didn't know for a minute where he was, that he didn't remember going to the doctors until I reminded him.  He said this has been happening to him, but its hard for him to explain.  This was followed by severe drunken fatigue.  I asked the doctor and they said that based on his EEG and other tests that he does not get any other seizures but the grand mal ones, that this behavior has nothing to do with his epilepsy, and that there is no sign of a tumor.  I'm really really scared.  If he has a seizure, because of his heart he can die.  He's been denied social security and ssi, denied any help from the heart group to fix his WPW, which can be fixed with a heart cath, and denied any indigent care for him for the cardiac procedures.  It's disgusting and he is no doubt scared and gets very depressed.  Please reply asap if you can.  Can seizures be preceded by extreme lucidity and extra normal and intelligent behavior? Can his doctors be wrong about his seizures?  Does anyone else have these lapses and problems with time and ordering of events?  The docs keep telling me the memory loss and swiss cheesing of his memory is normal part of epilepsy and tx.  I don't see how he will be able to function.  I'm scared that he is losing capacity, but the doctors just shake their heads and tell us that the other medicine is worse and he's not a candidate for surgery or any further testing.  It's really freaky, almost like multiple personalities.  And all the time he keeps telling me "its ok, its ok".  Please help asap if you can!  I don't know what is "normal".

Post Edited By Moderator (~Jennifer~) : 8/12/2006 9:33:33 AM (GMT-6)

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Thanks. Do you ever get a "high" feeling or feel really good or smart before this confusion episode happens? It's very dramatic with him. Almost like multiple personalities. I see a flash of my son at his best, then slurring, confused, frustrated, but talking and maintaining a conversation, usually repeated complaints of everything being to complicated and really getting negative, then an "awakening" as I remind him of what he's forgotten or that he's got recent events out of order, remind him of where is is and whats going on, then sudden extreme fatigue where he falls asleep whereever he is, fully dressed, in a chair, in public, anywhere. He is usually afraid when I wake him and doesn't know how he got where he is. The bad thing is that he often tries to smoke cigarettes during the confused stage and is belligerant and its impossible to get them away from him, or else he just whispers, its ok, mom its ok. I'm really scared because the extreme sudden sleep episodes happen alot, he says its his medicine. He was worse on depakote. I will follow up with his neurologist on this. It's just that if you didn't know him, you would probably call an ambulance because these episodes are so extreme. Maybe the medicine is changing the severity and type of seizures he gets instead of eliminating all of them. It used to work good. Thanks for the quick reply. I'm just a worried mom, though he's 18, and I sometimes get scared that maybe he took drugs, or took his medicine twice, or something else is wrong. He is not hearing voices or anything, he says. Its getting worse and worse. They saw the "sparking" or whatever on the EEG, and they could watch it spread from one P electrode to another but I don't know if this means they saw him having a seizure. He was just sitting there normally. When he goes down, he gets really bad and I had to give him CPR and he swallowed his tongue. Thanks again so much. I'm going to go check on him. I probably won't be able to sleep tonight.

Post Edited By Moderator (~Jennifer~) : 8/12/2006 9:34:22 AM (GMT-6)

3
I have grand mal seizures that are preceded by a petit mal. On rare occasions I have the petit mal only. Afterwards, I  do have the confusion about time and may think it is the day before or several hours before.  But, I do not sleep afterwards, nor are my petit mal seizures preceded by moments of hyper-lucidity. In fact, I am usually very tired, when I have them. I wish I could tell you something that would help.
 
Best wishes to you and your son. Don't stop looking for an answer. And don't discount that it might be the medicine.
 
c&c
4
He got up this morning, had a period of hyperlucidity, drank a glass of water, took his medicine, threw up, and was very tired and slept till noon. He is very groggy and his hands cold. He ate some cinnamon and sugar toast, which was all he wanted, and a little later I tested his blood sugar, which was 92. One time during these spells it was slightly over normal. I'm just trying to rule out any diabetes-type stuff. Does this go along with seizure disorders? I asked him about the aura thing. He says that he just can't remember anything, even if there was an aura or anything special that he does. He wont do what he's supposed to, smokes and burnt a hole in his laptop, and stays up late, and doesn't eat well. I told him if he wants to live on his own and not burn the house down, he needs to at least make some kind of an effort, to try to get a handle on when this might happen, but I don't know if he can't or if its the typical teenager stuff. Maybe I should look into the dog thing at least to borrow for a while, just to educate us. My chihuahua is aware to my illness but hasn't bonded to him in the same way. On the medicine, depokote put him in a coma practically and turned him blue, he's on trileptal now and he now he has these spells, up and down.

Post Edited By Moderator (~Jennifer~) : 8/12/2006 9:35:06 AM (GMT-6)

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Thanks you c&c and Mandi! I'm so stressed I haven't even got out of my nightgown yet.

Post Edited By Moderator (~Jennifer~) : 8/12/2006 10:13:06 AM (GMT-6)

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Cured, I don't know anything about a connection between diabetes and seizures, but seizures can result from LOW blood sugar. Would it be possible that your son's blood sugar suddenly surges (causing the hyper-lucidity) and then plummets (causing the seizure)?

Thinking of you both. Best wishes that you find what you need.

c&c

7

Cured,

Sorry things are so rough! sad   I don't know if the following will help, but here goes.

Back in 2001, when I was 19, and before the docs knew I was having seizures, I started having problems similar to some of your sons.  I was in college at the time, which complicated things.  I would be bouncing around the halls one day, totally hyper and on top of the world, and the next day, or even later the same day, walking around in a drunken stupor, barely able to remember what class I was supposed to go to, let alone be able to obtain any information during class.  My teachers thought I had ADHD, and that was why I couldn't pay attention, so I went to a doctor, and w/o really getting tested, started taking Adderall.  It just made things worse, so I stopped taking it on my own.  I didn't want to eat either, which started out innocently enough and then turned into anorexia and bulimia.  I didn't care what anyone had to say about it, I was totally out of control and very rude.  Since I was at a Christian college, this didn't go over so well, and I got asked to leave. mad

When I got home, I started seeing a counselor, and he talked with me about the whole multiple personality thing, too.  My parents were really concerned too, b/c I wasn't being the same daughter they raised.  But MPD didn't fit at all.  I wasn't hearing voices, I wasn't having hallucinations, and although I'd often get confused and lose track of time, or even where I was, I always knew my name was Heidi. :-)

I ended up going to another counselor, and started keeping a log of when these 'episodes' would happen; how I felt before and after, what I had eaten during the day (in case it had to do with low or high sugar levels), and monthly cycles(which, fortunately, your son doesn't have to worry about).  We started noticing a pattern, and I even had a few of these 'episodes' while talking to her, and she helped me be able to get in to see the right docs, eventually including a neuro, after the cardiologist, gynocologist, rheumatologist, and endocrinologist all stated I had some problems that might contribute to it (heart murmur, pre-diabetes, Reynaud's phenomenon, fluctuating BP, hormon irregularities, etc.) but nothing that could really explain why each episode was so similar, with a very distinct pattern of behavior.

The good news is, five years after it all started, I'm actually doing pretty well.  I'll still have auras like this sometimes, but the anti-seizure meds help control them.  I can tell when I'm starting to feel 'weird', and I'll get really rude after some of these auras and petit mals end in tonic clonics, but I'm more aware of it, and I let people know that I may be rude afterwards, but don't take it personally, b/c I'll snap out of it once I take a nap.  I don't lose track of time or where I am anymore.  Every once in awhile, I miss thirty seconds or a minute of a conversation, but I can jump back in w/o a problem, and most people don't even realize it happened.

Right now's the hardest part, and there may be more than one thing going on, including your suggestion of some plain old regular rebellion.  I know I wanted to fight the world tooth and nail when it all first started, and my parents were at wits end.  But, like Mandi said, keep getting things checked out.  If one docs not looking at the whole scenario and is blowing you off, search for another one.  A counselor might not be a bad option either, for him or both of you.  It's not an easy thing to handle, but you are by no means alone.

Good luck, and fight the good fight.  We're all here with you. :-)

~Heidi Hope~
 
 
"For I know the plans I have for you", says the Lord.  "Plans to prosper you and not to harm you.  Plans to give you Hope & a Future."
Jeremiah 29:11

8
Thank you all so much, and thank you Heidi, it really helps me to understand a lot since it seems like you went through what my son and I are going through and your symptoms are so much like my son's. He slept almost all day today. He starts back in college on the 18th and he will have to wake up and function. Whether some of this is depression or due to sleep problems, I think so. I got on him today and made him look at some posts here, he won't educate himself about his problems, he just tries to forget about them and won't talk to counsellors, he's trying to "be a man" about it and theres not much I can do. We live in a small town and he was so inadvertantly rude like to the other neurologist, who's kind of a jerk anyway, he won't see my son. Mental health won't see him because they claim he is non-compliant and drug shopping. Last time they treated him they gave him 800mg of neurontin before releasing him and he wet himself and seized all the way home and was very suicidal. They tried out seven different medications in 7 days. He ended up having his first seizure in front of me a month later. I may try to get some private group counseling. The worst thing is he has no health coverage at all. I'm afraid to add meds because he is so volatile. He doesn't understand why he can't take phenobarbital or klonopin, even a really high dose of klonopin wasn't enough for him. He thinks those drugs will make him feel better and have less side effects. I told him phenobarb was not a "fun" drug and that addiction is really awful problem to add to all the rest. What other drugs can he take? The neurontin type and prozac type drugs make him very suicidal. He wants to try welbutrin because someone told him it could help with depression and ADHD (which he really does have unfortunately), but do they ever give it to people that have seizures? I thought it increased them? He definitely has low blood pressure and some sort of circulatory problem they think may be vagus nerve. How do they treat that? Thanks for all the great help. I wish I could get him to go on the forum himself. I tried, but as soon as I left he quit.

Post Edited By Moderator (~Jennifer~) : 8/12/2006 10:12:17 AM (GMT-6)

9

Cured,

I don't know the answers for most of your questions, so hopefully someone else will come along and read, or you can get him in to see someone who will listen (which would be better, since none of us are docs, just educated in our own unique variations of seizure problems).

My dad used to say that you can't help people who don't want to help themselves.  I know from going through depression and being angry, that I didn't want anyone to help, b/c accepting their help would be admitting I had a problem.  I didn't have insurance when all this started either, but there was a counseling place, with an inpatient program, that saw me based on income. I stayed there for three days once, when I got really depressed about everything, and it helped a lot.  There were a lot of other people my age there as well, and each of them stayed for varying lengths of time, depending on what they needed.  I'm not sure what the Mental health place is that wont see your son, but if he's dealing with suicidal thoughts at all, then he needs professional help.  Not having insurance doesn't mean it's the end of the road.  Usually, you can call your local hospital and see if they have any programs, and they should at least be able to point you in the right direction.

Taking seven different meds in as many days isn't going to help anyone, and adding and taking away drugs on your own is probably the biggest no-no any doctor will warn you against.  Despite your son's avoidance on the issue, there are things you can do.  It may make you feel horrible to make him do something he doesn't want to, but in the long run, it's your best option.  The neurologist in your town isn't the only neuro you can see; I've had to travel up to three hours to see one, and it's well worth the drive to get some answers.  Regional epilepsy centers will work with you, and there are more options for counseling than just mental health.  With your son being a student, he should be able to get cheaper health insurance, and though pre-existing conditions can be a pain to deal with, the insurance can help greatly with many of the other issues, and in a year, would cover any testing needed (within reason, anyway).  You can even go down to your local Department of Social and Human Services department and request medical coupons, and speak with a social worker there, who could help with finding the other services.

Tell your son that "real men" are mature enough to admit when they have a problem, and smart enough to seek help.  It'll probably irritate him, but maybe it'll make him think about it, even just a little.  You can't let health problems ruin your life.  You still have a life to live, and there is always joy in that.

~Heidi Hope~
 
 
"For I know the plans I have for you", says the Lord.  "Plans to prosper you and not to harm you.  Plans to give you Hope & a Future."
Jeremiah 29:11

10
Thanks everybody! You have really helped. The problem seems better this weekend, maybe with the anticipation of college starting again. It's been a real struggle but he really likes to go. Sent an email to the medical college four hours away where they do surgery and research and stuff and they replied and will have the docs PA call me and maybe he can go there. They have more options for him and maybe can get to the bottom of this. What bothers me is that they don't really know the underlying cause for his problem and I guess this is normal.

***EDITED...Please reduce your signature line according to forum rules and guidelines. No more than 10 line****Thanks

Post Edited By Moderator (~Jennifer~) : 8/13/2006 2:20:15 PM (GMT-6)

11

Cured,

Sounds to me like your son may have a touch of "Bipolar Syndrome" and that very often triggers epilepsy or seizures.

My son is 20 yrs old, diagnosed with bipolar when he was 12.

I'm not in the medical prof. but the symptoms that you have described above sound exactly the same as my son has such as aggression, poor sleep (always wanting to sleep) and eating habits, violent behavior, wanting to spend money he doesn't have, periods of lack of concentration, very religious, poor social skills,paranoia, depression, etc.

Has he seen a psycologist to determine if it it bipolar?

This most recent bout, did you say it started around August 10/06?

There was a full moon that night and it's only logical that ~ since the body is composed mostly of water and the moon controls the tides, it has to effect the body.

The condition is controlled by sunlight (hyper) or lack of.(depression) and is worse around Easter or late Autumn (Thanksgiving)

There is written documentation on the WEB that states that seizures can be brought on by Bipolar Syndrome or visa versa.

I DEFINATELY know what you're going through as I have been dealing with it with my son for 8 years as well as my own epilepsy for the last 26 yrs.

Randy

 


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day

12
It's possible. He is very subject to sodium deficiency and is supposed to be eating a lot of salt and gatorade. He decided to do that in the last day or so, as well as take a multivitamin, which he is also supposed to do, and he is now on a hyper phase and feeling a lot better. School is starting and he found out he got a better grade in one of his classes than he thought, so he was pleasantly surprised by that. His turn around happened on Saturday and this morning. Could be mild bipolar, esp. with the sodium problem, it runs in the family. His epilepsy is in the parietal lobe, which is the "base of reason" so I think he has some different symptom than temporal lobe epilepsy. I made contact with the medical college in my area too. Thanks, though, for the info and the understanding. Its really hard to be sick and a caregiver too! Especially to a sometimes self-absorbed teenager!

Post Edited By Moderator (~Jennifer~) : 8/13/2006 8:57:25 PM (GMT-6)

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Sorry, was fixed when I went in. Should be ok.

Marji

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

14

Cured and MandiAnn,

I apologize for the way my post sounded earlier, with the 'real man' statement.  I was venting, and it wasn't appropriate, and I'm sorry.  This has been a really bad week, and I've been really hard with myself.  I guess that's what is coming out when I write.  I expect other people to do what I do, when maybe I shouldn't even be doing it myself.  Anyways, I really am sorry it came out harsh.

Cured, I'm glad things are going better.  I hope they continue to.

~Heidi Hope~
 
 
"For I know the plans I have for you", says the Lord.  "Plans to prosper you and not to harm you.  Plans to give you Hope & a Future."
Jeremiah 29:11

15
No problem here either. Believe me, you never know what approach is going to work. My son is very spoiled and self-absorbed and it is my fault for the most part because I was treated very badly as a child and I was determined that I would never be that way to my son. I found him trying to steal my pills recently, cutting holes in my pajamas to try to get them out of my pockets without waking me. I forgot to bolt the door. Unfortunately, he was kicked out of an AA facility because he refused to work and was disrespectful. Of course it was all due to his medicine. I took him to the free local mental health and they wont see him because he doesn't want to see them. He had friends at AA but felt betrayed when he was kicked out so he doesn't want to go back, besides, he is still got drugs on the mind. He blames me for having medicine, says its too much a temptaion. I bought a safe and he broke it. So far keeping it on me and bolting my door at night seems to be working the best. He can purchase drugs probably if he tries hard enough. I tried to get him in the local drug rehab program but he doesn't want to go, doesn't want to miss school. At one point I set him up in a hotel near school, apts are really hard to come by and they won't rent to 18 yr olds, but he spent the 3000 I gave him on crack and missed three days of school and was having mini-seizures when I found him. Most of his things got stolen or he pawned. Then, because he was really really remorsefful and I wasn't wanting to just cave in, I set him up in a different room where the crackheads couldn't find him and bought him a bunch of food and left him with 20 dollars. He managed for a week, but was really lonely and wanted to come home. I wish I could find a halfway house or something for him, but they are so hard to get in and he has no income, but is going to school full time. He won't get help, I go to alanon at times, without much help there. I'm so sick too that I'm just tired. I don't want to abandon him but can't toleratethe behavior. If he were well, he'd be gone. School started again and his spirits seem better and he has to keep it together to do the work. Hopefully he will stop. He just won't listen. He's going through a really bad phase that started before he knew he was epileptic. He got into drugs because of the blackouts and anxiety and depression, then he ended up having a seizure in front of me, whilenot on drugs. The treatment for epilepsy helps him, as does the ADHD treatment. Soon, he may get his license and he can move out and still go to school. I wish he could find roomate or a better situation. He is just so negative now about himself and his future.

Marji

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!