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partial complex seizures

Hi everyone, I'm new at all of this. I've never written in to chat rooms before but I could really use some information and advise, so I thought this probably would be a good place to start. My 25 year old son has been having Complex partial Seizures for about 5 years. He has Sclerosis of the frontal lobe. Until now his seizure have always been a lapse in time where he doesn't remember what happened in that time period. He has a strange look in his eyes but otherwise appears normal. 2 weeks ago he started what we thought looked almost like a muscle spasms in his left arm. By morning they were down his whole arm and leg. Now we know they were seizures and the doctors say he has epilepsy. He spent 12 days at Yale New Haven Hospital where his doctor was doing tests. The doctor says this is a new way the seizures are manifesting themselves. He is on 200 mg TOPAMAX 2x daily 1200 mg NEURONTIN 3x daily, 300 mg TRILEPTAL 3x daily. The TRILEPTAL is the new one they just put him on. I don't know anyone who has taken thid drug or if there are side effects. He was on Keppra before this happened. The Keppra didn't seem to help at all. He was just very cranky on it. He seems back to normal now. I found some wonderful websites with information about this and that has helped but there is nothing better than people. Has anyone had similar problems and can offer some advise. Sorry I rambled! ThanksPenny H.

Comments

RE: partial complex seizures

Hi Penny:I have heard of people being on three meds at once, although they usually try to avoid it. Maybe if it works they will try to take him off one eventually. Also, what they say about the seizures manifesting is true. They are finding new pathways in the brain to create havoc.Has he been tested to see if he is a surgery candidate? I have to be honest and tell you I have not heard good things about that neurology dept. I would consider taking him for another opinion.Here is a link to meds, click on for side effects:http://www.epilepsyfoundation.org/answerplace/Medical/treatment/medicati...

RE: partial complex seizures

Hi, They were testing him in the hospital to see if surgery was an option for him. They said sometimes it is not an option at all but maybe it would be and they could be the answer. Hartford Hospital reffered us to Yale New Haven. The said it was the best. Where would you go would another opinion? Thanks for the website about the meds! and thanks for the advice.Penny

RE: partial complex seizures

((penny))your son has had epilepsy since he started having complex partial seizures. i'm kind of surprised it wasn't called "epilepsy" for the last five years.... but i guess it's a matter of semantics. some people are more comfortable with the term "seizure disorder". what do the doctors have to say about the frontal lobe sclerosis? the new seizures are classic jacksonian seizures. if you look very carefully the seiuzre is likely to start in the thumb or pointer finger and the "march" up the hand to involve the arm and, as you found out, they can eventually spread to involve the entire side. this seizure type is named after the 19th century neurologist john hughlings jackson who first identified the progression of this sort of motor seizure. i take trileptal... and i wouldn't want to take it in addition to the other meds your son is taking... that's a lot of medication. is the doc planning to reduce one of the other meds? the "gold standard" for treating epilepsy is still montherapy.... and if you think about it, the old meds weren't controlling your son's seizures.... so it there is a certain logic in eliminating them if trileptal works. deciding which med to eliminate is a tricky business - but i would hope the docs are thinking about moving in that direction.

RE: partial complex seizures

Hi, The doctors never called his seizures epilepsy at first, I wish they had. His sclerosis of the frontal lobe is on top of his head on the left side. They refer to is as scar tissue. The odd thing is that his seizures are on the left too. The doctors want to do the test where they inject dye while he is having a seizure but he stopped having them. After a week they had to send him home. They are hoping that this test will show them why the seizure are on the left side. You described his new seizures perfectly. Shawn started taking Topamax for headaches a couple of years before he ever had seizures. When he started getting the seizures he started on the Neurontin. When he started going to Yale the doctors gave him Keppra in addition to the other two meds. The keppra did nothing for him that we could see. The Neurontin seemed to help the most and when they cut it back when he went on the Keppra the seizure increased. He has only been on Trileptal since he came out of the hospital. So far it seems to pretty much agree with him. He has a little heart burn and his acne. But he is will to wait to see it these things will go away before chucking the medication because he hasn't had any more seizures. I hope they will cut bake on the meds too. The large doses scare me. I would agree with you that this makes sence toward this direction and I am going to mention this to them even though I suppose it is a bit premature. Thank you for your information. My sister-in-law has Jacksonian seizures. She didn't knoe why they called them they. Now I can tell her. Thanks again.Penny

RE: partial complex seizures

that's interesting that shawn was on topomax for headaches. it's possible that topomax suppressed seizure activity - and that the headaches were seizure related... but that's one of those questions you will never know the answer to. three meds is not usually a good idea... standard neuro practice would be to get rid of one or both of the other meds... they weren't working... and it's too complicated a med combo (and all the meds he is on are newer meds, so they aren't sure yet of all the problems that can be associated with those meds and the combination of those meds) his trileptal dose is probably a little small for monotherapy for a man. but it shouldn't be a problem to up that dose IF the other meds are being but. http://www.medscape.com/viewprogram/2852_pnti don't think it is premature to talk about this issue with the neuro. if their philosophy toward meds is radically different than yours then you might want to work with a different doc. i had stomach problems for 6 months when i started trileptal.. but those have resolved.... so it's probably a good decision to wait it out... neutrogena has some of the best acne products going... my skin is more sensitive since i started trileptal as well...someone on the mgh board made the switch to dartmouth and they were thrilled with the change... her son is going for surgical evaluation for frontal lobe seizures... she posts on the epilepsy forum as "neverseenblue"http://brain.hastypastry.net/forums/showthread.php?t=25309i don't know why neuros don't explain things to patients... i suppose sometimes people are too overwhelmed in the neuros office to take things in... some people are in denial.... but i would think that it would be good for a neuro to use both "epilepsy" and "seizure disorder" and to make sure that their patient understands their diagnosis.

RE: partial complex seizures

I do worry about all the meds, but I don't know much about them. At least until now. I'm learning more because of the websites. When they took him off his meds in the hospital he started having both kinds of seizures but then all of a sudden after a lmost a week they just stopped and then nothing else happened for the next week. So the last test could not be done. I'll tell him about your comments on the trileptal so he will know he's not the only one. I also told him to mention it to the doc to see if there is something he can take for Nausea and heartburn feeling. Thanks for yur help.

RE: partial complex seizures

it's a good idea to check with the doc because some meds do react with AEDs.... i found it useful to stick to bland foods... oatmeal was my favorite... things that were acidic seemed to make things worse... and milk and yogurt are acidic (lactic acid) so even though they might seem like bland foods, they aren't. if you were to taste trileptal without the coating, it is a bitter pill. your son is not the only one to have problems with trileptal... i know several other people who had stomach problems. maybe it wouldn't upset his stomahc as much if he were to reduce the other meds.i lost 30 pounds when i started it... but i had weight to lose so i didn't mind... i spent 2 years on 300 mg (plus another med) and regained most of that weight.... and i just recently upped my dose to 750 mg... and had no stomach issues.... i thought i would have short term stomach problems again, but i didn't. so much of this is individual, but even within an individual things can vary quite a bit. i'll probably end up on 1200-1500mg (hopefully i won't have to go much higher than that) and time will tell how my stomach will handle that... at this point i won't even pretend that i know what will happen! or if i will run into problems with it... i just don't know. i've heard people say many times that the best way to chase away seizures is to hook someone up to a video EEG... i guess that's murphey's law! i've been asked to pray for seizures when someone was having an EEG - the few times you actually want a seizure. nobody ever said epilepsy was a compliant disorder ;-)

RE: partial complex seizures

Hi, He is very good about checking with the doc before taking anything. He lost albout 40 lbs when he started taking Topamax. He had weight to loose too so it was fine. It doesn't work like that for everybody though. I didn't realize this was another drug with weight lose as a side effect. You are so right about chasing away the seizures with the EEG. When they first took him off his meds he started having the seizures like crazy, and all of a sudden they stopped like magic. I couldn't believe it. He hasn't had a seizure since. Maybe it's the trileptal or maybe it's every ones prayers. I don't know. Does the trileptal work well for you? Are you pretty much seizure free. Is that a possibility, to be seizure free for long periods of time? The thing that is bothering him right now is not driving. He is so good about it. He doesn't complain. But I know he he hates not being able to drive. I don't know how long it will be that he won't be able to drive. We will hopefully find out when we go to the doc on June 27. Thanks :)

RE: partial complex seizures

people can be seizure free for very long periods of time.... it's a function of seizure type and a whole lot of luck. support boards self select for people who are having seizure problems or for people who are in transition. i had never considered an epilepsy support board until i knew i was going to need to change meds. the first med i took, mysoline, worked really well for me. i am discontinuing it mostly because i have some problems associated with long term use... frozen shoulders and plantar fibromatosis... and i would have been ok with those (well, kind of) but i seem to be developing some connective tissue abnormalities in my hands... i'm really hoping trileptal is going to work for me. it's a little early to tell because i am coming off almost 3 decades of using a barbiturate.... and withdrawing from that is a long process and one that can induce seizures... and i'm not yet at a full dose of triletpal .. soooo... time will tell. but so far things look pretty good for me and trileptal. i had a spate of simple partial seizures (sps) in late march and upped my dose of trileptal in response to that. that seems to have done the trick... but i still have 475mg of mysoline to drop, so who knows? the good news is the increase in trileptal stopped the sps in march, so i am optimistic. unfortunately partial seizures can be more difficult to control than generalized seizures. not driving is a huge problem. i have always driven. but in february through april when i dropped 1/3 of of the barbiturate i take, i didn't drive.... it just felt too risky. even if a neuro says you are good to drive you have to use common sense and be responsible.... state laws vary in terms of how long someone needs to be seizure free in order to drive. i think a lot of identity gets tied up with driving..... especially for men. there aren't that many women driving their husbands around town, so i think this must be very difficult on your son. people feel independent when they drive. i have a daughter whose license is 6 months old... it's made a huge change in how autonomous she feels... i have a friend with E who got his license at 39... about a decade after his ph.d ... and i really do think the ph.d is more valuable! but i know at times it felt like the drivers license was more important... even though we travled in the same direction what we know intellectually and how we feel can be very different. is your son working or going to school?

RE: partial complex seizures

He graduated from college a year ago with an accounting degree. He can't seem to find a job in accounting that doesn't require 2 years experience. So right now he is doing odd jobs. He just bought a new Nissan Altima less than a year ago. He has always been the designated driver because he doesn't drink because of his meds. I think you are right about men and their identity getting tied up with driving and their cars. It's like their cars are their babies. My husband was the same way with his cars. It must be very scary for people with seizures. Do you ever get use to it all?

RE: partial complex seizures

your son might try doing books for a small company that doesn't need a full time accountant.... my husband's firm uses an accountant on a part time basis. it's hard to be out there in the job market and try to sell yourself, but once he gets his foot in the door and does a good job he will find it easier to land the next job..... but like you said.... it's hard to get that first job... he might consider doing some volunteer work for a non-profit... it would be a way to get some experience and some exposure. it must be very difficult to have that beautiful car sitting in the garage. i think i am used to having epilepsy. it was a non issue for me for over two decades.... and i have to honestly admit that i find it a pain to have it be an issue again... though it isn't that big an issue... and i can't really complain... but i so much liked having epilepsy be a non issue that i postponed the inevitable med change... probably for longer than was sane... i like science so i have a fascination with the science of epilepsy... i like reading journal articles about epilepsy.... but maybe that's just a coping strategy on my part... i have E whether i like it or not... and looking at epilepsy from a scientific point of view is a way to distance myself from it on a certain level.... part of the trick is to get yourself well enough that you can be busy enough to not dwell on the fact that you have epilepsy... sometimes that is easier said than done.... and some people have personalities that are more adaptable than others (i have three kids and they are very different children....)part of coping with a change that something like epilepsy can bring, is to realize that things can be "normal" again.... it's just that "normal" isn't quite what it used to be... have you ever watched "my life as a dog"? it came out in the mid 80s...it's a great movie... it's not about epilepsy, but when i first saw it i laughed so hard i cried. that movie really captured my childhood and how i dealt with seizures and being undiagnosed for a decade... i highly recommend it.

RE: partial complex seizures

Hi, Thanks for the ideas. He is already volunteering for our church. We will just have to wait and see. So far the one job offer was way too far away from home for him to consider without a car. I is hard for him to leave his car sitting there but he has no choice. If he sells it he will loose his shirt with the depreciation. Do you mean your meds kept you seizure free for all those years or you just started having them? Shawn Never had them. He is so scared. I would like to understand more of what goes on when the seizure happens myself. The brain is so complicated and it is interest. Shawn is lucky that he is healthy otherwise. He has no other health problems at all so at least we can consentrate on the one thing. You are right, normal will never be normal again. I'll look for that movie. Thanks again.

RE: partial complex seizures

i mean the meds worked that long! i thought they were supposed to and i thought that was most people's experience. little did i know that people don't always have such good luck with their first med. the last 5 years or so on mysoline monotherapy i had some minor partial seizures. but nothing that really got in the way of things. i'm really glad the meds worked because i was so busy with my children when they were younger. the other thing shawn has going against him when he looks for a job right now is that it is a tight job market. my husband hasn't hired anyone for 2 years now and he has let 3 people go. the brain is so complicated and it is interesting. what have you read about seizures? a good source for general neuro info is a site designed for kids. i hate the graphics, but the info is very good, so i try to ignore the graphics. http://faculty.washington.edu/chudler/neurok.htmli used that site as a reference point for a very long time. basically what happens when someone has a seizure is that neurons start firing in synchronization..... as more neurons get recruited into the synchronized pattern, the seizure spreads. in some ways that seems counterintuitive, because we think of a seizure as a time when the brain gets chaotic. but in fact, chaos is the natural "healthy" state of the brain. seizures sometimes stay limited to one part of the brain... sometimes they spread to include the entire brain... sometimes the whole brain gets synchronized at the same time... that's the difference between a seizure that primarily generalizes and one that secondarily generalizes. the manifestations of the seizure will vary depending on the part of the brain that is affected by the abnormal activity. surgeons can evoke seizures by stimulating different parts of the brain during surgery. in some ways it's a bit odd to think of all of this, but in other ways it's fascinating. a seizure can serve as a sort of "reset" button and leave the neurons firing in their "normal" chaotic pattern. i like the following site for epilepsy information. it contains links to several good epilepsy and brain sites. http://members.nuvox.net/~on.jmorgan/

Re: RE: partial complex seizures

my son has epliepsy (complex partial) from the left frontal lobe and also has complex motor tics. my dr. never mentioned jacksonian seizures.....but it makes alot of sense. my son has many tics throughout the day but when i asked the dr. if they were seizures he said no, but it sounds ilke what he is doing is exactly like jacksonial seizures. can you give me more info on this or tell me where to research it? thanks so much!

Re: Re: RE: partial complex seizures

Hello ilovedylan,
I looked up a few places for Jacksonian Seizures and will list the links below. I wish you and your son a good day!

-Spiz

http://epilepsy.expert-expert.com/jacksonian-epilepsy/

http://www.wisegeek.com/s/Jacksonian-Seizure

http://encyclopedia.thefreedictionary.com/Jacksonian+seizure

RE: partial complex seizures

Hi Penny.I have to agree that another opinion might be in order here..I was surprised it took so long to get an opinion on this from his doc,as en_nuffofthis was in their reply,and from what you say about were he had the testing,and the comments about that, it might be well going elsewere to have him checked over again.This med combo in side effects alone could also have contributed to his problems..according to what I've read about topomax alone(but that was just one observation that was a biased one.)in how he felt.And the makers of neurontin are already being sued for their marketing of this drug as monotherapy.http://www.adrugrecall.com/neurontin/effects.htmlSo it might be wise to see if that drug can be evaluated as to the benefits of your son taking it now in conjuction with the other two,along with another workup to see if what he experiences can be reduced to give him a better quality of life.this link might be useful as well for you. http://www.epilepsy.com/epilepsy/seizure_medicines.html

RE: partial complex seizures

Hi, This is all so scary to me. We have an appointment with the doctor at Yale on July 27. I am hoping they have some answers from all the testing they did. Shawn was on Topamax for Headaches a couple of years before he had seizures. The doctor gave him the Neurontin for the seizures. It's the high doses that scare me. What did you read about Topamax? I take 100mm a day for migrains. I read the above article about Neurontin. Thanks for your advice!

RE: partial complex seizures

Hello there. Glad that it was of some use, this may be. This is the research article that I was sent via mail. I'm sorry it's brief and there's no link (I hear it was from a group on Yahoo that offered support via mail but I could be wrong about that. I heard they had disbanded to pursue another avenue of research.)Though I'm sure that this was not taken daily by whoever researched this article,as your son did-at least not for the length of timeframe as your son.Otherwise,they like your son would have checked with their doc that the titration rate would have had to have been been slower,and they would have encountered less side effects,I'm certain of that.At least from the drop out rate mentioned in the last link that talks of future research needs( to avoid flawed research.)'i saw reference to a study about some of the risk factors for developing psychiatric problems while on topomax. the drug can work wonders for many people. i thought it was interesting that beyond titrating too quickly other risk factors were identified. the researcher found : Family psychiatric history and family history of epilepsy, personal history of febrile convulsions, psychiatric history, and presence of tonic-atonic seizures were found to be significant risk factors. here' s the "whole" abstract. 'These links below, are the most current research articles I can find on your behalf for topomax,and I hope they might be useful for you to read(the results of these which are known.)as research thankfully is an ongoing thing( especially with the advent of laptops that you can take anywere to do reseach upon.)and help in allaying your questions about your own dosage.As I do that by talking/researching the task as you are doing it will alleviate the way you feel and you will find a solution as to your needs,and those of your family as a whole in dealing with what you have encountered along the way in reaching the point you are now at.I hope that the testing does go well and I'm glad to read that your son has a sense of responsibility towards others in his attitude to driving as he has,but sorry to hear that he is not in employment as such due to the legth of time required..You must be really proud of him for trying though,and the efforts he is putting in to gain experience in whatever he tries.At least he can keep his hand in by doing odd jobs and remain focused enough in the meantime. http://headaches.about.com/cs/druginfo/l/aa_topamax_mt02.htmhttp://www.m... it pays off when this kind of research in the link below is undertaken.There is a need for it,it seems from my own reading.The article is long,but it's the most recent regarding aspects of drug therapy in epilepsy and the benefits overall,and the need for futher research and study.Especially when combined together as these researchers want to see happening.http://www.child-neuro.org.uk/artman/publish/article_48.shtml

RE: partial complex seizures

Hi, Thank you for the research article and the websites! They are great. I like to read anything I can get that might help us understand. The Topamax side effects are a lot less if you start out taking it at a lower dose. It takes longer to get up to full strength but it's worth it. He experienced the weight lose (38 lbs which is 18% of his weight), a slight slowness of speech, and that seemed to be it (that enough). When he went back on after his hospital testing they put him on all at once and he had the change in taste problem also and the fatigue. They seems to be wearing off some. We never had epilepsy in the family that I know of, but who really knows. You know how weird people were years ago. Heaven only knows what they might have thought. My migrains were awful. When I first had them 30 years ago there was nothing but pain killers to take, and they just drugged me up. I would only take them if I was ready to die from the pain. Now I am on 100mm of Topamax daily and I also have the Imitrex tablets that I can take when I feel one coming on. Sometimes I wake up with a full blown one. I read the article where it said you can take the Imitrex even then and it will help some. I didn't know that. So thank you for that article. I started slow, 25mm, but still had the typical side effects. I had the taste change, the tingling of hands and feet, I lost 27 lbs (17%), fatigue, confusion, but all of that but the weight lose disapeared after about a month. Shawn is a really great guy and he is being so patient with the whole driving thing. I know it must be really hard on him to have to let others drive him around. He was always the designated driver because he didn't drink because of his meds. He has to wait till he hasn't had one for a certain amount of time. I think its 3 months. I know he is also very scared. I am very proud of him.You are right, the reading and research helps to understand about the meds and the desease. At least I don't feel like a complete idiot when I'm listening to the docs. Thanks for your help!

RE: partial complex seizures

Hi again.Thank you for the kind words in your post,all of which I agree with...(Not that you are an idiot.,they don't read I should imagine.)You are so right in that,there needs to be more understanding, research, that is modern and ongoing.It will be needed in the future for the families that are still to come,so they can read and learn.Hopefully with the work that is done by the various organisations that do work on a charity basis-as well as the official ones,then that day will be sooner than later.We can but hope and pray to the Heavens,or,if of a different faith as we are all drawn from various places,whatever Gods we worship to put an end to the myths that still surround the topic under discussion.If you liked those links and found they helped,then please try these?(Everything you need to know in one spot.)and might give you the answers that you and your family need,if you use the search engine within them as well as the ones-and articles upon this site and others in your quest for knowledge.http://search.nlm.nih.gov/homepage/query?FUNCTION=search&PARAMETER=epile...'m sorry to read that his hospital testing experience was as it was.I hope his doc/neuro were understanding about that after what he went through when you told them about the side effects? I read that yours were pretty torrid as well,though glad to read that you toughed it out with the painkillers(seemed that you had no choice there from reading your post.) and am so glad that one of the articles that featured Imitrex was helpful in giving you insight.This might help as well in giving you knowledge as to the various med combinations and what to expect from taking them that can happen.Though I think you know all there is to know from the last links.Still,it might help.http://www.migrainehelp.com/ I'm sorry to hear about your son and the way you feel about him is plain to see,as is your description of how he feels regarding being scared.I mean that,it's not a pleasant feeling, and it's tough when as a grown man-which he will see himself as,that he has to try and handle this.The pressure that goes with it and amongst his peer group,and the pressure with that as well.I just wish there were more research articles written for men? No disrespect given,but has he tried talking about this himself in a forum.I know that EFA has various articles aplenty,and do good research and fund projects with the money they raise- and they do have forums as well as that.Your son could try posting there if he felt up to it,and talk through how he does feel?This organasation as well does good work and campaigns to further knowledge.I've been hearing a lot about it today.http://www.epilepsy.org.uk/links/index.html

RE: partial complex seizures

Hello, The hospital testing at Yale was fine. Actually they treated him really well there. Everyone was really nice to him. they just could finish testing because the seizures stopped. It was Hartford Hospital that was awful. They just doped him up and sent him home. He is really scared. We talked for a long time last night. He said, what if i get a job a i have a seizure at work in a meeting etc? It is embarrasing for him. It's not like having a headache. But I think the more he reads and the more people he meets that have seizures, the more he will realize that he can live a normal life. The deacon at our church has seizures. He is also a teacher at the catholic high school in our area. I didn't know he had seizures until he told me. I can only imagine how he feels. We also talked about causes for seizures and he wondered if the video games could be what was causing his seizures. He hasn't played the games since he came back from the hospital and he hasn't had any more seizures. He use to play the games quite a bit. I told him how i started posting and how it helps me. Maybe he will decide to do the same. Thanks for the sites.

RE: partial complex seizures

hi, one way to look at seizures is that they are no more embarrassing than being pigeon toed or having a cold.... it's a phsyical thing that you don't have control over. but the logic of the heart is different from the logic of the brain and i think your son's fears are normal. it isn't as though your son is doing anything intentional to hurt someone... that would be something to be ashamed of... but, that being said, i think it is only normal to feel a bit embarrassed about a seizure... even though you know logically that you shouldn't be... i think you can reach a point where you don't feel embarrassed, but it takes some time to get there. i think if more people who are successful in life "come out" about having seizures, then people wouldn't feel as embarrassed about seizures..... but the catch 22 in that statement of course is that people who disclose that they have epilepsy are often not hired for the job... so in order to get ahead people often don't bring up the fact that they have epilepsy... and then as time goes on it can become a bit awkward to divulge that they have seizures..... you will be surprised just how many people you know who have epilepsy; like your teacher friend. 2,400 years ago hippocrates wrote about epilepsy and talked about the "shame" that children learn... "But this disease seems to me to be no more divine than others; but it has its nature such as other diseases have, and a cause whence it originates, and its nature and cause are divine only just as much as all others are......"But the brain is the cause of this affection, as it is of other very great diseases....."But such persons as are habituated to the disease know beforehand when they are about to be seized and flee from men; if their own house be at hand, they run home, but if not, to a deserted place, where as few persons as possible will see them falling, and they immediately cover themselves up. This they do from shame of the affection, and not from fear of the divinity, as many suppose. And little children at first fall down wherever they may happen to be, from inexperience. But when they have been often seized, and feel its approach beforehand, they flee to their mothers, or to any other person they are acquainted with, from terror and dread of the affection, for being still infants they do not know yet what it is to be ashamed. http://classics.mit.edu/Hippocrates/sacred.htmlvideo games can certainly trigger a seizure... and if he is doing well while not playing them, it would be a good idea to stay away from them. but he also has frontal lobe sclerosis... so there is an identified insult to the brain that would be enough to cause seizures.... other lighting situations that are problematic can be flourescent lights, strobe lights, sunlight through trees or a fence... or sunlight on water.... flickering candles... some graphics in cartoons or commercials.... i think we really would benefit from more men participating on support boards...

RE: partial complex seizures

I totally agree that seisures are no different than any other problem and it will take time and seeing other men in business that have seizures that are leading a normal life even though they do have it. i didn't realize all these other lighting situations that are problematic such as flourescent lights, sunlight through trees or a fence... or sunlight on water.... flickering candles, some graphics in cartoons or commercials, could trigger a seizure. I heard about the video games and strobe lights. What do you do about all the other things? Does that mean you need to stay out of the sun light and off the beach?

RE: partial complex seizures

i use really good sunglasses, the quality you would use if you were tackling a himalayan peak. it seemed a bit of an indulgence at first, but they are defintiely worth it. high quality sunglasses are a definite help for me and others with E. i pretty much always have them with me... either on my face or on top of my head... one of my favorite activities is canoing, and i certainly don't want to give that up. another trick under adverse lighting conditions is to close one eye if you start to feel a bit "wonky". part of the problem with lighting is the amount of your visual field that is occupied with the problematic lighting... so reducing visual load can be helpful. stores that have natural light as well as flourescent light are easier than stores with no natural light.... your son might find it helpful to talk to jeff morgan about lighting issues... jeff has tons of links on the topic. he can post to him on: http://www.debraboard.org/cgi-bin/temp.pli'm going to be away this weekend, but i would love to continue the discussion on monday. aiw4us@yahoo.com

RE: partial complex seizures

Hi,Shawn bought a really good pair of polarized sunglasses and now after I told him what you said, he is taking then everywhere he goes. We realized that it was the light bouncing off the water at the Cape that was causing a ton seizures when he was on vacation the past few years. We didn't realize that that was why he was having them. I couldn't figure it out because he's relaxed, he school, no work, etc and he has a bunch of them. Now I know. Thank you for the info and the websites.

RE: partial complex seizures

too bad about the cape! there are two problems with the cape - one is the sparkling water, but the other is the sheer magnitude of space occupied by the water. he might have had fewer problems had less of his visual field been occupied by that. my friend is bothered by stores on many counts: the flourescent lights, the pattern of the tile floor, the lights bouncing off the floor, and the noise and echoes that are found in places like shopping malls and large stores. part of it is the flourescent lights, but it's also the fact that there is no escaping the sensory barrage. another friend's son is bothered by patterned carpets - and part of the problem with carpets is that typically they occupy yards and yards of the floor. i don't like leaving home without my sunglasses and i'm not particularly photosensitive. a lot of the literature talks about tonic clonic seizures a result of photic stimulation, but many of us suspect that sps and cps are also evoked by visual stimuli. so keep that in mind while reading about photosensitivity and seizures. http://www.epilepsytoronto.org/people/eaupdate/vol9-3.html

RE: partial complex seizures

Hello again.Working backwards somewhat in reply to your post,my own impression was this when I read your reply,that yes,this is tough to deal with, and your son will be scared,and you realise that.Everone can get scared .And are trying to help him and learn at the same time.You are here,you are talking and have talked to your deacon/teacher and he has shown you that it isn't easy dealing with what is in front of your son,but you are trying to do that.I have asked in my latest post if it would be possible for him to talk to your son.Regardless of his age,he is your son,your child,and you want the best for him.Hence all the reading you are doing.That leads to the point below.You are trying to walk in another person's shoes in this instance your son.No bad thing.It's caring, and not to be dismissed lightly,as is listening and to walk were another goes,you have to listen.We all do-even the staff that treated your son,which was two extremes. I also realise that disclosure is a very powerful thing,down to each individual,and that yes,it can be hard.A good example of judgemental would be if a person say who had epilepsy and not talked about it,even told their children,or wanted to.Then asked for advice regarding that.Then, judged the other person asked differently regarding disclosure? No matter what the disclosure was.Or even in reverse had told,and still been judged ,and punished in a manner that caused pain, because of the judgement.No matter that they were telling the truth.And the mother had to accept that for her child.I know people this has happened to.The decision caused pain.I realise also that you yourself do have headaches,that they are bad,and no,this is not the same situation as having a headache.not even near that.The implications are bigger.And you also realise that your son has to both form an identity,and make a living whilst coping with this.My latest post might help with that.Only your son can say to you that he is ready to post in any forum.It has to be his choice.But no harm in offering him help and advice whilst doing that.Again,in my latest post to you.I'm sorry about the testing,that he was treated as he was in the reaction that he got,this happens,and it does,the posts on here and other places tell you that.It's not lame to say that,just that the experience could have been better for him during the testing.It went from one extreme to the other in the way he was treated in your description,and this can/does happens.From that testing ?maybe a positive one for your son.You now have to wait and see.Video games? there was/ is a connection in what you say in your post and them.That,might not make your son happy, if for him they are an outlet for the way he feels.But if he follows the advise given within those links it might help.As I say in my new post to you about a link within it that might help him.www.epilepsy.org.uk/info/videogames.html www.epilepsy.com/info/family_kids_video.html PS:Women as well are dependant on driving ,and the lack of it can have an impact on them to.That was brought home to me over weekend through advice given to a person regarding testing she's having,that has had an impact on her not expected.Not expected at all through not driving.Hence my changing this post.

RE: partial complex seizures

thanks for the sites. Your right, he will post when he is ready. The information is good and helps both of us greatly. We both are reading everything we can get our hands on so I appreciate all you have done with the websites and info.

RE: partial complex seizures

Hi again.Your son still playing the games? If the advice in the link works/helps(and epilepsy action give good advice.)and he reads and follows up on it,then he shouldn't have a problem hopefully with photo sensitive epilepsy.Your son sounds as if he wants the same as you. There's a good role model already in your deacon/teacher for him.Could he talk to him,as you have?Penny,all your son wants is.what you have described,it's just a wait and see process right now,until the tests are in.For now ,this link might help get him advice on finishing his studies or a new career/ career change,and he can be around men in their forum ,while all the test results are in, then the decisions made regarding his future.http://www.epilepsyfoundation.org/programs/Sites.cfmHe may even want to join a yahoo group and email through that until he feels up to branching out in another direction(If so,then this contact address might help, if your son wishes to mail him.)Matthew has lived a long time with epilepsy,had surgery more than once .He used to be in a support group on Yahoo,and he's friendly,asks that people mail him.matthewford@shaw.caHe's spoken in different places -though I haven't seen a post by him here yet.Also to others who want to live life as fully and normally as possible(his girlfriend 's in a wheelchair)Matthew tells his story as it has been from his own point of view,but what does come through in the telling ,is how he sees it for others as well.

RE: partial complex seizures

Hello, No, he hasn't played video games since this all happened (about a month now) but he had been before. We both think that his seisures are caused from light because we were remebering that when he is at the Cape he goes for 2 weeks and stays at a place right on the water and he will have many while he is there. So he bought some really good sunglasses. He just met Deacon Richard this weekend at Church and yes Deacon Richard is a really nice guy. Also Richard is a good example of someone who can have a normal life with seizures because Shawn doesn't know anyone else. You are right, we just have to wait and see what happens right now. It's been over a month with no seizure. Thanks for the site. I'll share it.

RE: RE: partial complex seizures

Try your local EFA as well Penny.They usually hold meetings and he will be able to join in and meet others there that can share with him. Your deacon/teacher friend could help in just talking to him.  He will join in when he is ready, might be here, might be a group like the ones on Yahoo, or even the  EFA forum, but he will know that wherever he posts or talks,that others feel the same as himself.

Re: RE: partial complex seizures

Hi Penny, As one who has had

Hi Penny,

As one who has had temporal lobe epilepsy for 49 years, I politely suggest your first priority should be to learn about AEDs.

Here are some pages, in a site run by physicians, where you can do accurate research on drugs & TLE
http://www.epilepsy.com/epilepsy/seizure_medicines.html or
http://professionals.epilepsy.com/page/medications.html

Temporal Lobe Epilepsy:
http://www.epilepsy.com/epilepsy/epilepsy_temporallobe.html

I'd highly recommend he see an epileptologist (seizure specialist) as opposed to neurologist (the entire brain and backbone).... Epileptologists are far more knowledgable.

Check out both those sites for excellent info. And best of luck.

Now, if your son just aquired E, initial inacceptance by the one who experiences it, is common.
Also, with due respect to you.. (I realize you are trying to help) what he goes through when seizing and afterwards, differs immensely you see and that is what's most imporatant.

The best thing his mother can possibly do for him is love him regardless.

If you'd like to write another mother (I have a 22 year old son) about what you are coping with, my addy is find_soleil@hotmail.com

sol

Re: Hi Penny, As one who has had

Hi,
I've never used one of these chatt rooms before so be patient if I go wrong. I'm suffering from complex partial seizures and they've put me on all different kinds of medication to no avail. If I don't take medication, I gett more severe seizures but fewer of them. I'm now taking Lyrica and find that the seizures are less severe but seem to take longer to subside. I have been advised to go for an operation and was just wondering if anyone can tell me if such operations are successful.

It is so good to have a website with other people out there who understand what I'm going through. dr

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