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    Old 10-18-2006, 07:13 AM   #1
    jeri L.
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    please describe temporal lobe epilespsy

    Does anyone have temporal lobe epilepsy? What are the symptoms? Please describe what the seizures themselves are like? What emotional effect do they seem to have? How long do they last? Any information at all would be helpful. Thank you.

     
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    Old 10-18-2006, 09:47 AM   #2
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    Re: please describe temporal lobe epilespsy

    Hello Jeri....Actually I think Temporal Lobe Epilepsy is the most common form of epilepsy...TLE was my diagnosis and I have many different types of seizures. Do you have epilepsy? It may be best to ask more specific questions.

    Some of my seizures make me smile, even though I don't want too...some that I have had at night scare me and make me wish it was morning....some that I have during the day are just sort of a whoosh of deja vu...so familiar but I can't quite figure it out...

    Lamac

     
    Old 10-18-2006, 04:21 PM   #3
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    Re: please describe temporal lobe epilespsy

    I'd agree with Lamac here, i'm afraid. Seizures originating in the temporal lobe can vary and a wide variety of symptoms can occur, so it's hard to compare without being fairly specific.
    Usually, though, if you have a simple partial seiz originating in the temporal lobe you'll get intense feelings such as fear or happiness, vivid memories. For me, these are auras or warnings of complex seizures where I can lose consciousness - not necessarily totally and perhaps only briefly. Partial seizures can occur as a result of epileptic activity in any part of the brain but they most commonly originate in the temporal lobes, I believe.

     
    Old 10-18-2006, 10:40 PM   #4
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    Re: please describe temporal lobe epilespsy

    That's ineresting. This is actually about my daughter. She is 16 and mentally disabled. She has had a seizure disorder all her life: grand mal and myoclonic seizures. But she has been experiencing moodswings for a few years now. Doctors thought bipolar, but that has been ruled out and it is now believed to be a part of her neurological multi-handicap, and possibly TLE. She is not a candidate for the testing used to diagnose it unfortunately, so it's all trial and error to see if she responds to new meds (tegretol). She is not able to communicate effectively, so it's difficult to know what's going on. She has also been put on birth control to see if it might help provide relief from her moodswings. Perhaps it is hormonal. I just thought I would ask you all if you could describe TLE so I would know some things to look for. I sure appreciate the insight. Thank you.

     
    Old 10-19-2006, 08:38 PM   #5
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    Re: please describe temporal lobe epilespsy

    I've got complex partial seizures/temporal lobe epilsepsy....my auras start with a familiar "uh oh" feeling and a weird pressure in my chest area- not pain but a sensation that I know means I'm going to have a seizure.... I don't remember much after that, but am told I chew (inside of mouth is often chewed up, along with tongue), blink, and sometimes my left arm shakes slightly....then I sleep for hours, and if I"m awakened before i naturally wake up, I"m a grouch and hard to reason with. If I wake up on my own, I'm worn out, but know it's over....still feel foggy for a while and like a bus hit me. I have them when I'm awake or asleep.

     
    Old 10-20-2006, 08:40 AM   #6
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    Re: please describe temporal lobe epilespsy

    Hi Jeri - Rebecca has those mood swings too and of course we are trying like you to have them figured out.it affects her quality of lie....it comes right out of nowhere....she is now on Keppra which makes some patients feel rage/suicidal etc. Not our Rebecca - the more you up the does - the happier she is. Has not helped her daily tonic clonic seizures - but it is like a happy pill for her................Paula
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    Old 10-20-2006, 02:16 PM   #7
    jeri L.
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    Re: please describe temporal lobe epilespsy

    Hi Rebecca's mom, when I read about Keppra I thought the side effects were too similar to what my daughter (Melanie) already goes through. That's encouraging that your daughter responds so positive to it. So do you see a difference with her mood swings since Keppra? Glad she's happy . Melanie is really happy when she's happy, but about every 2 to three weeks she is prone to have mood swings. They seem to vary in severity. Some months are manageable. Others seem literally impossible with more aggression, and very emotionally intense. Her psychiatrist thinks these moodswings could be symptoms of TLE. He put her on tegretol for TLE but she's still working her way up into the therapeutic range, so we're not sure if it will make a difference just yet. Hopefully the combination of the tegretol, the birth control and behavior mod will bring hope. May I ask what is Rebecca's disability? Melanie has CP. It is the justational form. She is also what is called microcephalic (smaller than normal brain) thus her limited learning ability. Many little things as well... I have never known anyone else with a similar disability since Mel was borne. I use to feel so isolated. Good thing is everyone loves Mel. Hope the Keppra really works for your daughter. Good luck.

     
    Old 10-20-2006, 03:50 PM   #8
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    Re: please describe temporal lobe epilespsy

    Hi Jeri - no the keppra doesn't work. She is up to 1750 mg a day. They want her to go up to 3000. She has lennox gastaut. She walks and talks in short phrases/sentences. Rebecca only weights @84lbs. We may try again turning on the VNS. She has a new neuro. and I don't care for his style, but technically he may be great. We see him next month. Friends have suggested maybe he will be a "House" style of doctor!!!! My sense is we will go off Keppra - just trying it to try it. You know the routine right? .......is your daughter mobile with the CP? Every case is so different. We keep trying but we like to keep it very simple with the drugs as they have never done anything.................Paula
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    Old 10-20-2006, 06:01 PM   #9
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    Re: please describe temporal lobe epilespsy

    Hello again Rebecca's mom. Yes, Mel is very mobile, but hand held in public as she can't be trusted to watch for cars, etc... she does have ataxia (staggering gait) and is quite unbalanced and apt to fall. She receives PT and OT and sleeps w/leg braces on. She's never needed a wheel chair, but sometimes we opt for one in case she tires out i.e. costco or amusement parks... sorry to hear the keppra isn't working for your daughter. Sounds like you're trying everything. Sorry if I'm not familiar with VNS? When Mel was young her neurologist said that she'll probably never be seizure-free without meds because it's difficult to control seizures in children with multiple handicaps especially if severe. Have you ever heard this? I think he was speaking statistically though, so I never gave up hope. Tonic-clonic seizures are exhausting both for the child and the parent as you know all too well. That's what Melanie has when she has them, but they're rare for her these days. Thankfully lamictal worked for her. Hve you ever tried lamictal for your daughter? I also believe Mel developed a pattern and has them only just prior to waking from a deep sleep as her neurologist explained. This is quite common from what I understand. As for the possibility of TLE who really knows? It makes sense though seeing how the rest of her disability is neurological. I got tired of too many conflicting opinions from different docs, some putting her on psychotropics without a diagnosis and the side effects of those drugs only made things worse. No more of that. She's happier now. Just gotta figure out these mood swings. Similar to what you're going through. Good luck with the new neuro doc. Keep smiling.

     
    Old 10-21-2006, 12:42 PM   #10
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    Re: please describe temporal lobe epilespsy

    Hi Jeri - me again.....yes Rebecca has been on lamictal. She has been on every drug. VNS - is the vegal nerve stimulator. Not covered in Canada but I believe it is in the USA. It is implanted in her chest with a wire to stimulate brain activity - doesn't work. We will give it another go though before removing it. I'm suprised Mel has not had that. Especially with tonic clonic. Rebecca's drop seizures are what led us to the corpus callosatomy. As you said, it is very stressfull for the patient and for the caregiver. Rebecca drops very suddenly - often in the middle of a word she is saying - no warning. Usually daily. Right now she averages 2 a day.

    In late '04 Rebecca moved into a group home for complex care patients. It is 12 minutes from our house. So, she spent 20 years at home and you can imagine how difficult it was for all of us to make that change - yikes. There are nurses on staff and it is a lovely home. She goes to a day program in the area during the weekdays that can accomodate her seizures. We have her here on weekend and once during the week and visit her on another evening. We talk to her on the phone every day and are very proud of her. We are still extremely involved in her care and always will be, as will her younger sister Anna. Anna goes to the group home for sleepovers - very special. I have to admit, my husband and I are truly enjoying our sleep.

    When Rebecca is with us, we enjoy every moment. It is very different not having all the services in our home. We had night nursing a few nights a week before she moved to the group home. So, life has changed yet it still remains the same in so many ways.

    Here, you can legally stay in school until the age 21 - so this was a good change for Rebecca all around as we were very concerned about how she would manage once school was over. Things have a way of working out........hope they do for you too. Mel is blessed to have you advocating for her. Advocacy is something I am passionate about. It is a tiresome role but worth it. I love being Rebecca's Mom.................Paula
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    Old 10-21-2006, 04:08 PM   #11
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    Re: please describe temporal lobe epilespsy

    Rebecca's mom, well I guess our situations are more common than I thought. Melanie lives in a group home during the week. It is an hour from our place, but the nearest biggest town with available resouces. She is suppose to be moving to a new group home in February but chances of finding one in norhtern California is near impossible. I'm worried. Don't want her to move too far away. Anyway, she'll be 18 in 15 months and will then have to transition to an "adult" care home. We are hoping to find one closer to home so she can continue spending weekends at home. Now, and in the future as well, she needs a home with rotating qualified staff. It's best for her. She can attend school until 22 here. Unfortunately, there aren't as many resources in north Cali as we live in kind of a rural part of the state. But like I said an adult setting and adult programs should be easier to find. We're hoping to find a temporary home in the same area we are expecting she'll be living when she's an adult. That would help make a smooth transition to at least keep her in the same area. The way I look at it, Mel's privaliged to live in a group home because it will teach her some independence and give her a sense of inclusion with others her age with things in common, she's eligible for more resources to help meet her needs, yet we still have total legal custody and stay very involved (like you) so she actually gets the best of both worlds. The home Rebecca resides in sounds ideal. I hope she's happy. Mel's brother lives at home of course. He's 15 and a sophomore in highschool. Rebecca is blessed to have you advocating for her too. Thanks for the encouragement and best wishes to you and your family.

     
    Old 01-05-2007, 05:40 PM   #12
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    Re: please describe temporal lobe epilespsy

    my daughter has temporal epilepsy and is autistic she,s 14yrs and has lots of other problems
    i feel so sorry for her she finds having epilepsy hard and still has a lot .she had 66 fits in 1 day alone id add them up i used to total the amount at the end of the mth to keep a record and in over the years as had many
    from her being 8wks to 9yrs she had from oct 92 to jan 97 1.457 from jan 97 upto march 02 another 283 totalling 1.740
    the doctors were going to operate but couldnt as they said it wouldnt make any difference so just carried on increasing and changing medication she still has up to 18 in a mth and i still think thats to many and doesnt like taking her meds either

     
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