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

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)

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

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)

Cured,

Sorry things are so rough!   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.

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.

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.

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

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

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.