Hi All! I'm new. Have a newly diagnosed teen with complex partials. Controlled with 1000mg. Depakote & 50 mg. Lamictal. But her memory is terrible, makes school tough. How can you test if you can't remember? Drs. seem to be reluctant to try something else. Don't know where to turn. Why can't we try other meds. We can always come back to these if nothing else works!!!!!!!!!!!!!! or am I wrong?
teensmom,
I can't give you any suggestions but I can only pass on my own experience.
My short term memory is almost totally gone and my recall isn't much better.
It's caused problems with my job too but that's a whole other story. Besides this I have slurred speech and very poor gait and coordination(as well as several other side effects from the meds), people think I'm drunk. I've even been pulled over by the police as DUI until they saw my medic alert bracelet.
Lots more to say but I don't want to bore you all.
Randy (ontario, Canada)
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
Hi - I am sorry to hear about your daughter. I am on 300 MG of Lamictal, and I know what you are saying. My memory can be really bad including not remembering the right word (I had a melt down with the phone company when I couldn't even remember my SS number), or forgetting what I was supposed to do one second earlier. It is trying, and frustrating. I have been on the Lamictal for 3 months now, and I think the memory loss is getting better, it still happens, but it seems less, or maybe I am finding coping skills to manage it.
I do know that the Lamictal is working very well for me, and it is one of the best of the newer medications, so if it is working in terms of controlling the seizures, that is positive, and it may be why they are reluctant to change it (most medications have one side effect or another).
If it is possible, I would talk to her teachers about giving her some lee-way with memory testing or at least make them aware of the situation. If it continues to be very bad, you might ask to set up an IEP (individualized Education Plan) for a legal contract with the school for intervening or managing your daughter's particular needs re testing, etc.
I hope things settle down for your daughter and your family. Best wishes!
I do know that the Lamictal is working very well for me, and it is one of the best of the newer medications, so if it is working in terms of controlling the seizures, that is positive, and it may be why they are reluctant to change it (most medications have one side effect or another).
If it is possible, I would talk to her teachers about giving her some lee-way with memory testing or at least make them aware of the situation. If it continues to be very bad, you might ask to set up an IEP (individualized Education Plan) for a legal contract with the school for intervening or managing your daughter's particular needs re testing, etc.
I hope things settle down for your daughter and your family. Best wishes!
you guys are sweet to reply so quickly thanks!! She is 16, just diagnosed in march. We are in PA. There is a 6 mo. backlog for IEP testing. Only passed last year because her grades were really good before march. Don't think retesting will help, because the info isn't getting in, in the first place. Know what I mean? Shes academic everything all level 3 classes. I'm thinking about dropping her down to business classes.
Thanks so much, glad I stumbled onto this site!!!! 
Pam
Post Edited (teensmom) : 7/12/2005 1:06:04 AM (GMT-6)
We encourage all members to follow treatment with a doctor.
Post Edited By Moderator (~Jennifer~) : 7/12/2005 11:49:11 AM (GMT-6)
Pam, I posted on the other thread but will again here. There ARE modifications the school can do for her to help with testing. Yes meds affect memory but so do uncontrolled seizures so meds are important....
The school has a limited amount of time to test NO MATTER HOW back logged they are!! I think it is within 60 days of the written request. If you submitted in writing, then send a copy of that to the Superintendant of schools PLUS the school board. Look in your area if you have school advocates! These can be a big help in getting her what she needs. She SHOULD qualify for a 504 plan at least.....
Keep pushing for answers.
The school has a limited amount of time to test NO MATTER HOW back logged they are!! I think it is within 60 days of the written request. If you submitted in writing, then send a copy of that to the Superintendant of schools PLUS the school board. Look in your area if you have school advocates! These can be a big help in getting her what she needs. She SHOULD qualify for a 504 plan at least.....
Keep pushing for answers.
Thanks for caring, good news!!!!! they are finally ready to try playing with her dosage levels.
I can usually tell when her blood level has dropped to the point of her heading to seizure, so I can just bump the dose back up if she is headed in that direction. Maybe memory will improve!!!!!!!! I know, I know........ don't get to excited. lol But it's a start! Also I'm working on a letter requesting IEP testing. You guys have been very helpful! Thanks, Pam
I can usually tell when her blood level has dropped to the point of her heading to seizure, so I can just bump the dose back up if she is headed in that direction. Maybe memory will improve!!!!!!!! I know, I know........ don't get to excited. lol But it's a start! Also I'm working on a letter requesting IEP testing. You guys have been very helpful! Thanks, Pam
Post Edited (teensmom) : 7/14/2005 8:26:12 PM (GMT-6)
Hi,
Keeping a symptom "diary" really helps in developing a medication schedule that works for your daughter (with her MD's imput of course). Pick a symptom. In this case "memory." Make up a scale of 1 - 5 or 10 and define them. For instance in a scale with 1-5, with 5 being the worst day for this symptom, 5 could be defined as 4 or more "serious" memory lapses (forgot a pot on the stove, forgot MD appt., forgot midterm test, went to the school bus stop on Saturday, etc.) Keep the master scale where you can check it and adjust it over a few weeks. Pick a color for this symptom (gray would be a good one 
) Now, using a monthly calander (one that does the month as a page with squares) you can keep track of the symptom by putting a gray number in the corner of the day.
You may have three or four major symptoms. This is just an example of two. Insomnia (blue) scale is broken down by hours of sleep for that night. Irritability (red) scale needs to be measurable. 1 - uncomfortable but able to discuss it. 2 - edgy enough to avoid interaction with family or friends 3 - intolerant of siblings, classmates 4- snapped at family members to excess with what "appeared" to be unequal provocation 5 - serious argument (note topic)
Numbers for each are recorded at the bottom of each calander square. Important! Note any changes in meds in the squares (doses, additions, or if meds are late or missed).
Progress is often over days, weeks and months. At the end of the month, for each color coded symptom, you can look at numbers at the end of each week. Add the days up and divide by the days. While one or two really bad days can give the impression things aren't improving...
The diary can be used to better communicate with your physician on the symptoms that are most troubling and positive improvements can be reported. "I'm having trouble sleeping" does not have the same impact or give as much information as saying, in the past month, I'm averaging only 6 hours of sleep per night per week, when last month, I was sleeping an average of 9 hours.
Another use for the diary is this. In women, from puberty on, there is a replicateable correlation between pre menstrual hormones and frequencies of seizures. It's very possible to, once this is established in a pattern (for each woman pre menstual exacerbation of the seizure disorder and lowering of the threshold, in days may be as few as two or as great as 8 prior to the onset of one's period.)
Having a neurologist or neuropsychiatrist that deals with epilepsy and who has a nurse clinician as part of the treatment team is a real asset to help go over the diary. For instance, if you are not getting enough sleep, all the meds in the world aren't going to keep you seizure free. 
It may take someone with an objective analytical view, to see certain patterns. If you have serious memory problems that are time of day specific (all incidents in diary concerning forgotten dates involve appts. in the morning) a number of solutions might present themselves. For instance, going to bed earlier, spreading out the night time dose through out the day, and one of the simpleist, stop pretending you're going to wake up a different person and make appts. in the afternoon if at all possible
Oh, and in the case of people still in school, memory is a definite problem and can qualify for a learning disability that necessitates assistence. It is well documented. Solutions can be found. Longer test times as well as person affected, in the case of "fill in the blank" tests, being given multiple lists of words with the words contained in large groups, from which to choose. The inability to find the right word is common. We can, usually, *recognize* the word we need from a list. Also, test results (as in diagnostic tests, not school tests) can be variable depending on the day it's taken.
Sorry, I've rambled... oh, by the way, did I mention hypergraphia being a serious trait of my seizure condition lucky you, huh?
Don't know if any of this helps....
Dawn
Post Edited By Moderator (MandiAnn) : 8/17/2005 1:57:16 PM (GMT-6)
So sorry, it took me so long to reply. Haven't checked my e-mail for at least 2 months, lol. Things are going so well for my daughter, we have really been actively making the most of the summer. Alas, school started last week, but even that is a bright spot!!!!!!!!
I'll just give you a quick update. After months of asking for a change of meds, or lowering her doses, they finally agreed. Hallaluyah!!!!!!!! Apparently she was overmedicated. We dropped her Depakote from 1000 mgs. to 750 mgs. And saw an immediate improvement in her memory and her appearance. Now she isn't sluggish and she's bright eyed again.We also lowered the lamictal. Band camp started "2" weeks before school started, 6 hrs. a day 3 of that in the hot august sun. Dr.s gave me permission to up or lower her meds using my own judgement. She has signs (in her sleep) we can read to see if the blood level is ok or dropping. Sometimes I upped the depakote. We did ok, feel so much more in control. All we have to do is pay attention to the signs. Now that school started, I only give her 1000 mgs. of Depakote on Wed, Thur, and Fri. 750mgs. on other days. Thursdays and Fridays are long days for her. School, Band 3 Hrs. & homework, football games on fridays.
To make a long story short, the same dose that stole her memory in the spring when she was less active, doesn't affect her memory when she is more active. Apparently her body is using it.
Thanks so much for caring, you have some good ideas! You can ramble all you want, apparently I do that too!!!! lol Keep in touch!!
Hi..
I had my first seizure last Sat and am on Lamactil working up to a full dose. I too am having memory problems and I am 44 years old. I had an EEG on Thurs. and have both right and left side "irregularities". I have some speech and writing difficulties. Nothing earth shattering but still more than I can get used to in one week. The meds make me tired and very forgettful. Do I just need to get up to speed or what? What is the I.D. of choice that I can wear when I am out on my own. I have not been alone since my siezure and am a bit frightened.
Thanks,
Lynn