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Outgrown Epilepsy

Thu, 01/08/2004 - 12:36
I am 36 years old and had my last seizure at the age of 14. It was probably what is now being called BRE but it was always called a petit-mal/temporal lobe cross when I was young. I was on many medications from phonbarb to Dilantin and Depakene and zorontin (sp?). It was an odd thing as I outgrew it twice. I went off meds at about 5 years old after having seixures for about 2 years, only to go back on them when I hit puberty in the 6th grade. When I began meds the second time I was having (according to my mom) 100-200 seizures per day even on meds. Needless to say I was not the most popular kid at school.My question is, now that I have not taken any meds for over 20 years and have been seizure free for as long, are the sleep crashes, anxiety, sleep deprivation and foggy feelings (I have had the foggy feelings for as long as I can remember) related to my epilepsy history? Is there some research out there That I can look into? I have looked on the internet but I have not found anything specific to what I am looking for.Tracy

Comments

RE: Outgrown Epilepsy

Submitted by tibet2 on Fri, 2004-01-02 - 02:15
hi tracey, i just read an excellent article about something called transient cognitive impairment in the december issue of the lancet neurology and BRE was mentioned. the context being that BRE is not neccessarily that benign and that there can be advantages to treating it ( and epileptiform activity in the absence of overt seizure manifestation). high seizure loads or extreme seizures can cause permanent damage. do you have health insurance?what do you mean by sleep crashes?it sounds like you could use a thorough neuro exam. you could be having nocturnal seizure activity and that could account for most of what you describe. nocturnal seizures are very common - the brain is extremely active when we sleep.i tried posting links the other time i posted - but they didn't show up as links and the spacing i made in my post also did not show.so i will only provide one link .... http://members.nuvox.net/~on.jmorgan/

RE: Outgrown Epilepsy

Submitted by stearmn on Fri, 2004-01-02 - 15:02
Tibet2,Thanks for your reply! I took a look at the link sites that you sent and I now think that maybe BRE is not correct, I don't know. I just remember my mom always saying "petit-mal/ temporal lobe cross". But the "sleep crashes" are periods every so many years, when after pushing myself for so long I have just crashed into sleep where I would sleep for about 24-36 hours straight! I am long overdue! I have health insurance and have been pursuing this as a depression episode until this weekend when I read something that possibly connected the depression (which I knew could have sleep issues)with the epilepsy. And since I spent many years in a sort of denial state, All of my personal epilepsy knowledge is in hind sight.I am currently on 20 mgs of adderall per day to give me some "pep in my step" since I spent the months of June through November in a state where I was practically unable to to move except to get my children off to school. The adderall has helped but I am still having sleep issues. IMy concern about a thorough neuro exam is that being a teacher of children with severe special needs one learns which neurologists have the best rep among the parents. And from my perspecitove the choices are not good. Any suggestions?

RE: Outgrown Epilepsy

Submitted by tibet2 on Sat, 2004-01-03 - 02:42
hi, i get how this works! i click on the message and get to see it with spaces and paragraphs! what can i say? not bad for the last of the luddites (and what is a luddite doing with a computer you might ask? that's another story...)my insurance is very limited and i try to remember to count my blessings that i even have insurance. my new neuro is better than my old neuro and that's progress. you sound pretty nervous about a neuro consult - especially when you don't hear great things about the local neuros. maybe the children see docs who specialize in pediatric neurology..... so maybe there is a great neuro out there who sees adults. otherwise i would maybe try for one who is easy to talk to. it might sound lame - but neurologists are all smart people - so all things being equal - find one you can talk to easily. at least you will enjoy the visit.you shouldn't be this tired - i've never slept that long in my life.....maybe you should start with a very thorough physical to rule out other problems and to talk to your doc about who s/he thinks a good neuro is.i know someone you should post to - jeff morgan - whose site is in my last post.... go to support boards and then go to debraboard and he will answer questions about sleep.... he knows a lot about it. he's been interested in it for a very long time. you know you had seizures as a kid but you might never know for sure what kind you had. the past is past and today's problem is the one you need to do something about. it seems as though you are likely still having at least nocturnal seizures and with today's technology and research there is so much more that a neuro can tell you than when you were a child. and treatment options are much beter than they were in the past. a neuro can probably give you a better guess than that "hybrid" seizure type your mom was told you had. you'll be amazed at the tools docs have now. you are definitely due a good neuro examination - and while part of you might dread it - i think there is also a part of you that wants to feel better. and i think it is extremely likely that you can feel better than you feel now. if you can't do it for you, then think of your children and do it forr them. i don't know how old your children are - but teens need you just as immediately as toddlers - so you have a lot of responsibility regardless of your children's ages. change is difficult - sometimes it seems like the misery we have is better than the uncertainty of the unknown. but it really isn't..... there is a way out of this for you.... but you will need the help of a doctor.if your case is too complicated then a general neuro should refer you to a neuro specialist. a neuro who specializes in epilepsy is called an epileptologist. are you aware that TLE affects the limbic system.... emotions... big time?and i don't know how old you are - but i am assuming you are a woman - but women with TLE go through menopause on average - sooner than women without E.... i have been so surprised to find women on other support boards who are perimenopausal in their early 30s (that's early - even for TLE - but i have seen it several times) and are unable to concieve because of premature ovarian failure..... but menopause can also affect emotions..... i know you wanted answers - and all i gave were considerations and possibilities....it might take awhile to figure out what is happening and how to fix it. let me know what you plan to do....

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