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Temporal Lobe Epilepsy - Simple partial Seizures
Mon, 06/05/2006 - 05:40Topic: Parents & Caregivers
Hi,
I'm new to this, my son (10years old) was diagnosed with temporal lobe epilepsy last week, i believe he has simple partial seizures although the doctor did not go into this. For the past year or so he has experienced episodes of de ja vu, at first we thought that was all they were, after he has theses episodes he has a really bad headache, feel sick, sometimes goes clammy and feels quite tired. The last couple of times he had it he also heard voices, which was really scary for him, the episodes of de ja vu and voice hearing usually only last about 2 mins. Sorry if I'm rambling on a bit, but I feel in such a daze about it all, my son is an above average intelligent boy and I feel like we've gone from just thinking he's having de ja vu, which most people I know get every so often, to epilepsy. The diagnosis was confirmed by a 3rd EEG, but the doctor doesn't seem to be able to answer any of my questions and I reall feel like we're walking blind. If anybody out there can help answer these questions I'd be so grateful, firstly I asked the doctor what the chances are of the seizures developing into full blown fits, she said she didn't know, I asked if he might grow out of them, she said she didn't know. Basicallly she said they will either stay the same, get better or get worse, which to me is pretty obvious! She left it up to me whether or not we started treatment, and so far we haven't, but if I start treatment now while they're not so bad will that prevent them getting any worse? Or if they're going to get worse will that happen anyway regardless of whether we start treatment now or later? If anyone can help I'd be so grateful, right now I don't know whether I'm coming or going.
Thanks
Lisa
Comments
Re: Temporal Lobe Epilepsy - Simple partial Seizures
Submitted by mojeaux86 on Sun, 2013-03-17 - 20:17
I'm sorry if this is rambling a bit but this is how I write. When I tell people about my experiences I get to shaking and pretty much panic attack. So it's hard to write. I love writing though but hate the state it puts me in so I tend to steer clear of it.
I know this is an old post but I had to reply. This is the first time I've heard someone say they felt like they were here to save the world. I have left TLE and have the same feeling. My auras are religious in nature. I've always seen god and walked with him. Everything in this "hallucination" is destroyed my whole city. God tells me something but I never remember. I get the feeling that if I could only remember I could save the world. I feel like its my mission to tell everyone I can. My interpretation of everything being destroyed is that we're destroying the earth and on a direct path to destruction. Everytime i see this i have a gran mal seizure. my simple partials are nowhere near this but tie into it. It's déjà vu like a flashback of a dream ive had but i cant remember ever having this dream. I never see god in my partials but the destruction is still there fire trucks and ambulances everywhere. This is brief 15-20 secs with after effects lasting 2-4 minutes. I don't drive no more because of this I see a fire tuck and here comes a partial. I haven't had a seizure in almost a year and to tell you the truth in a weird way I miss walking with god and having these "visions". But I'm glad I don't have seizures anymore. Another weird thing is I'm atheist been that way since my seizures first started in my early teens. I just can't believe that feeling just isn't there anymore.
To anyone else trying to decide if they should be on meds. Get on them. It might take time to find the right ones but its worth it in the end.
Re: Re: Temporal Lobe Epilepsy - Simple partial Seizures
Submitted by Jakelucy on Sun, 2007-07-22 - 19:03
Hi Lisa,
Your situation sounds very very similar to my own experiences. My son had occasional episodes of De Ja Vu which would normally only last a minute or two. This began just before his 10th birthday (he's now 13). I took him to my GP who refered him to hospital. Unfortunately his condition was not considered urgent and his appointment was scheduled for several months later (we live in England where health care is very different). During this time the episodes increased in frequency and he began feeling sick, tired and had headaches after. We eventually saw a neuro who diagnosed TL epilepsy (simple and complex partial seizures) and gave meds as an option. I felt it was to soon to consider this as we were coping fairly well. Several months later Jake became ill with a stomach bug. Nothing serious but his temperature was up. Later that day he told me he felt funny and then had several grand mal/tonic colonic seizures. I had to call paramedics and he was given meds to stop the seizures and rushed to hospital. Fortunately he suffered no long term effects. Doctors advised me that his simple/complex seizures had spread across his brain due to his temperature and that this was less likely to happen if he had been on meds. We saw his neuro and started on meds the following day. Jake was included in the discussion and told me he wanted to start meds and take control of the seizures. After the Tonic Colonic seizure Jakes simple/complex seizures increased alot in frequency. I dont know if this was because of the Tonic Colonic seizure or the introduction of the meds but I felt very guilty for both. I agree that it is a hard decision to make and no parent wants to give their child drugs. In our case it has taken several years and different meds to finally find a drug for Jake but we now feel as though we have turned a corner. Jake has not had a seizure for a few months (he now takes Keppra) and tells me he feels like himself for the first time in years. He is very open and honest about his Epilepsy and copes very well with taking his meds. Your son may continue with his partial seizures and never have another type of seizure however his epilepsy may also progress as Jake's did. I wish you and your son luck and hope you make the decision thats right for you both. Let me know how you get on. Lisa
Re: Temporal Lobe Epilepsy - Simple partial Seizures
Submitted by steveo on Sat, 2008-12-27 - 06:06
thank you! A concerned friend!
My friend is experenced the voices for so long he has teamed up with them and does what they say, and nothing will stop him till the forrest and the world is saved by him. " He has been choose the THE CHOOSEN ONE." And nothing will stand in his way or slow him down to keep him from what he believes he is here for and that is to save the world. But since he has joined forces with them because he had no way to fight them back. And he will not take his meds. because they told him that they are against him and are bad for him.. There is so much more I could talk about, I need to come up with some answers. Before someone gets killed or very sercisely hurt...Surgeory is out of the question. He has excaped from our Pine View Behavioral Health Center three times.... Somebody please help?????
thank you! A concerned friend!
My friend is experenced the voices for so long he has teamed up with them and does what they say, and nothing will stop him till the forrest and the world is saved by him. " He has been choose the THE CHOOSEN ONE." And nothing will stand in his way or slow him down to keep him from what he believes he is here for and that is to save the world. But since he has joined forces with them because he had no way to fight them back. And he will not take his meds. because they told him that they are against him and are bad for him.. There is so much more I could talk about, I need to come up with some answers. Before someone gets killed or very sercisely hurt...Surgeory is out of the question. He has excaped from our Pine View Behavioral Health Center three times.... Somebody please help?????