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Old 11-21-2003, 12:41 PM   #1
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lynn1965 HB User
Normal test results???

Hello Everybody,


I just wanted to check in. Kyle's test results have come back normal. His 48-hr eeg and MRI are both normal. His neuro. still believes that he is experiencing temporal lobe seizures due to his symptoms, history, and reaction to Depakote.

Although, she would like his symptoms to completely disappear.
She is increasing his Depakote to 1500 mg. a day. He still has slight dejavu feelings, but the extreme fear is completely gone. She said that sometimes the activity is so far into the temporal lobe it is not detected on eegs.

She mentions intra-nasal eegs and an extended hospital eeg, but right now she feels that if we continue to treat him with medication and monitor him that, that is the best route.

This is all really confusing to me. Is there anyone else being treated for temporal lobe seizures that has had normal test results?

 
Old 11-21-2003, 01:43 PM   #2
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Boneyard HB User
Re: Normal test results???

Hi Lynn, I am awaiting tests at hospital and am a bit nervous about it. This is only the second time anyone has ever mentioned (dejavu) feelings and extreme fear, That i have seen. (I am not the only one!!!!) Sorry but its just i now know i,m not alone in this!. I have had this all my life, and have lived as best as i can with it. But now there getting to stronge and i am having difficulty coping with them. I have found myself at times asking my girlfriend the same questions over and over again, either because i cant remember her answer to it from the time before? or cannot remember asking the question in the first place! This at times is very hard for my girlfriend to take. (Not surprising us men are hard work at the best of times!) Has this happened with Kyle? It drives me mad aswell, i hope they can put a stop to it all. I work for the rail network in England, so while i have been as i am at the moment i have been put on the sick!. (As i am a Signalman) As to is my condition (Temporal lobe epilepsy) remains to be seen? But i have seen someone post before somewhere else who does have (T L E) discribe the feelings of Dejavu! I hope myself and Kyle get sorted soon.

Regards

 
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Old 11-21-2003, 07:46 PM   #3
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Re: Normal test results???

Hello "Boneyard",

Yes, it is good to hear that other people have symptoms similar to my son Kyle.
He had been experiencing extreme deja vu, fear, depression, and strange, vivid dreams for quite awhile before he confided in me.
He truly thought he was going crazy. I too, did not know what to think so he originally went to a psychiatrist because we thought maybe it was anxiety.
The psychiatrist asked about his birth (lack of oxygen due to cord wrapped around his neck twice) and truly thought he was experiencing temporal lobe seizures. The psych. prescribed Depakote while we were waiting to get into the neuro. He went on to a neuro. and many tests.

What puzzles me is all of his normal test results. Even still, his neurologist believes it is temporal lobe seizures.


The depakote has truly helped with the dejavu and fear. He now only gets slight dejavu feelings and the fear has diminished greatly.
I have to say before he was on the medicine it was really interfering with his life. He often didn't want to leave the house because he was afraid of getting the dejavu feelings when he was out with his friends. The feelings he described were indeed intense and odd.

Are you on any anti-seizure meds.?
Have you had any abnormal test results?
I was curious if there was anyone else on the board who had normal test results and was still being treated for seizures.

I truly wish you well. If you can, let me know about your test results.
Thanks for your reply!
Take care,
Lynn

 
Old 11-22-2003, 02:53 AM   #4
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Re: Normal test results???

Hi Lynn & Kyle, I will post my test results on this board. Awaiting my tests at the moment, (expecting to wait 6 to 12 weeks to see neuro) As i got the letter saing this on the 20th of this month. I am on no medication at this time, so just put up with them as best i can. As i said before this can be hard for my girlfriend as i sometimes forget things i have asked before, so i ask it again. I too sometimes feel like i am going mad! I just want it all to go away, get on with my life. At times little things seem just to hard to cope with, stressing me out further!. I look forward to them stopping altogether. (Hopefully)

I will post what happens when i see my neuro.

regards

 
Old 11-22-2003, 07:36 AM   #5
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Re: Normal test results???

Hi Boneyard,

Thanks for your reply. I am curious as to what your test results reveal. As I said Kyle's were negative but his neuro. is continuing to treat his symptoms as if they are temporal lobe seizures. She firmly believes this is what we are dealing with.

Just to give you hope, Kyle is doing 100% better on anti-seizure meds. Like I said before his dejavu has decreased dramatically. He used to get up to 15 episodes a day, for days at a time. This was accompanied by extreme fear, sadness, confusion. He even said it fell like he had died and gone to hell. This really scared me. Happy to say he now only gets a few dejavu episodes a week, and the fear has pretty much disappeared. Now that he knows he is not "crazy" I think this has helped him deal with the situation. His is now back to all normal activities. He will even be getting a license in January.

Thanks, again, and looking forward to hearing about your test results.

Take care,
Hope you feel better soon.
Lynn

 
Old 11-25-2003, 09:37 AM   #6
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kayakmom HB User
Re: Normal test results???

Quote:
Originally Posted by lynn1965
Hi Boneyard,

Thanks for your reply. I am curious as to what your test results reveal. As I said Kyle's were negative but his neuro. is continuing to treat his symptoms as if they are temporal lobe seizures. She firmly believes this is what we are dealing with.

Just to give you hope, Kyle is doing 100% better on anti-seizure meds. Like I said before his dejavu has decreased dramatically. He used to get up to 15 episodes a day, for days at a time. This was accompanied by extreme fear, sadness, confusion. He even said it fell like he had died and gone to hell. This really scared me. Happy to say he now only gets a few dejavu episodes a week, and the fear has pretty much disappeared. Now that he knows he is not "crazy" I think this has helped him deal with the situation. His is now back to all normal activities. He will even be getting a license in January.

Thanks, again, and looking forward to hearing about your test results.

Take care,
Hope you feel better soon.
Lynn




Hope he keeps doing well on the meds! My son has a neuro who still believes he has Temporal Lobe E as well as Frontal lobe partials, but has stopped meds. He had a VEEG at a different place and that Epi said he no longer had e(long story, he is still having seizures, but was off meds 10 months for all the testing....) What we were told in the hospital is lot s of abnormal in sleep, verbal report told the neuro no abnormal, written report is different still. Nuero is listening to the Epi saying he is the best (NOT)

Hang in there. SO good to hear that the meds are helping your son! Sam is doing ok off, still has seizures, but his are mild....waiting to see if he will outgrow or if they will get worse as puberty looms... he is 12 1/2 now...
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Old 11-25-2003, 06:45 PM   #7
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Re: Normal test results???

Quote:
Originally Posted by kayakmom
Hope he keeps doing well on the meds! My son has a neuro who still believes he has Temporal Lobe E as well as Frontal lobe partials, but has stopped meds. He had a VEEG at a different place and that Epi said he no longer had e(long story, he is still having seizures, but was off meds 10 months for all the testing....) What we were told in the hospital is lot s of abnormal in sleep, verbal report told the neuro no abnormal, written report is different still. Nuero is listening to the Epi saying he is the best (NOT)

Hang in there. SO good to hear that the meds are helping your son! Sam is doing ok off, still has seizures, but his are mild....waiting to see if he will outgrow or if they will get worse as puberty looms... he is 12 1/2 now...
Hello Kayaymom,

Thanks for your reply and good wishes. I was just wondering has your son ever had normal test results but still experienced seizures?

I am really wondering if there are other people out there that have had all normal test results but are still being treated for seizures based on history, symptoms, and reaction to anti-seizure meds. I guess I am looking to see if there are any other people presently being treated for temporal lobe seizures without abnormal test results. How common is it??

Thanks to anyone for any input or feedback.
Take care,
Lynn

 
Old 11-25-2003, 08:00 PM   #8
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kayakmom HB User
Re: Normal test results???

Quote:
Originally Posted by lynn1965
Hello Kayaymom,

Thanks for your reply and good wishes. I was just wondering has your son ever had normal test results but still experienced seizures?

I am really wondering if there are other people out there that have had all normal test results but are still being treated for seizures based on history, symptoms, and reaction to anti-seizure meds. I guess I am looking to see if there are any other people presently being treated for temporal lobe seizures without abnormal test results. How common is it??

Thanks to anyone for any input or feedback.
Take care,
Lynn

I think ours is a strange case. Yes there are others who are still treated even with normal results. In our case, he is still considered to have seizures, but is off meds. He has had normal and abnormal results in tests. His symptoms are classic for sensory simple and complex partial and nocturnal seizures. He is just in that percentage who have a normal EEG interictally (in between seizures) and a bad place that saw that as meaning no Epilepsy. His neuro is in a different hospital and we are waiting the right timing to have a second opinion at a good Epilepsy center... I think MOST neuros do take the improvement shown by the meds and take that into account. Dr Daniel MIles from NYU has an article on kids having normal EEGs and how that does not rule out E. You can try a google search to find his articles... Good luck!!
__________________
mom of 2 teens who have battled seiuzres.

 
Old 11-26-2003, 08:48 PM   #9
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lynn1965 HB User
Re: Normal test results???

Quote:
Originally Posted by kayakmom
I think ours is a strange case. Yes there are others who are still treated even with normal results. In our case, he is still considered to have seizures, but is off meds. He has had normal and abnormal results in tests. His symptoms are classic for sensory simple and complex partial and nocturnal seizures. He is just in that percentage who have a normal EEG interictally (in between seizures) and a bad place that saw that as meaning no Epilepsy. His neuro is in a different hospital and we are waiting the right timing to have a second opinion at a good Epilepsy center... I think MOST neuros do take the improvement shown by the meds and take that into account. Dr Daniel MIles from NYU has an article on kids having normal EEGs and how that does not rule out E. You can try a google search to find his articles... Good luck!!
Dear Kayakmom,

Thanks so much for your reply and info. I will search for Dr. Daniel Miles article.
I appreciate the feedback. It helps me to sort out what's going on.
Thanks again,
Hope your son's tests/meds are straightened out soon.
Take care,
Lynn

 
Old 11-27-2003, 07:19 AM   #10
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kayakmom HB User
Re: Normal test results???

Quote:
Originally Posted by lynn1965
Dear Kayakmom,

Thanks so much for your reply and info. I will search for Dr. Daniel Miles article.
I appreciate the feedback. It helps me to sort out what's going on.
Thanks again,
Hope your son's tests/meds are straightened out soon.
Take care,
Lynn


Dr. Orin Devinsky has also written on this...they are in the same group at NYU, I believe...Best wishes...
__________________
mom of 2 teens who have battled seiuzres.

 
Old 11-28-2003, 06:58 AM   #11
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lynn1965 HB User
Re: Normal test results???

Quote:
Originally Posted by kayakmom
Dr. Orin Devinsky has also written on this...they are in the same group at NYU, I believe...Best wishes...
Hi Kayakmom,

I read the article by Dr. Miles it was very helpful. It also led me to other links which were helpful. It reading this information I found out that approx. 20% of people suffering from seizures will have normal test results. This made me feel a little better.

Thanks again, I will search for Dr. Devisky as well.
Take care,
Lynn

 
Old 11-28-2003, 08:12 AM   #12
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kayakmom HB User
Re: Normal test results???

Quote:
Originally Posted by lynn1965
Hi Kayakmom,

I read the article by Dr. Miles it was very helpful. It also led me to other links which were helpful. It reading this information I found out that approx. 20% of people suffering from seizures will have normal test results. This made me feel a little better.

Thanks again, I will search for Dr. Devisky as well.
Take care,
Lynn

So glad the article helped, reading what both doctors had to say helped me so much!! Hang in there....keep pushing for answers...
__________________
mom of 2 teens who have battled seiuzres.

 
Old 11-28-2003, 04:58 PM   #13
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becky1954 HB User
Re: Normal test results???

Hi
I have been diagnosed with temporal lobe seizures. All they have ever said is that they see brain wave activity on my left side which would be right because my seizures affect my right side. I don't have the feelings your son experiences, Lynn. I space out and my right arm gets numb. I have been taking Dilantin for over 5 years. I was having trouble sleeping and my psych put me on topamax to help me sleep which is also an anti seizure med and I haven't had a seizure since. I hope everyone does well.
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Old 11-29-2003, 03:21 PM   #14
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lynn1965 HB User
Re: Normal test results???

Quote:
Originally Posted by becky1954
Hi
I have been diagnosed with temporal lobe seizures. All they have ever said is that they see brain wave activity on my left side which would be right because my seizures affect my right side. I don't have the feelings your son experiences, Lynn. I space out and my right arm gets numb. I have been taking Dilantin for over 5 years. I was having trouble sleeping and my psych put me on topamax to help me sleep which is also an anti seizure med and I haven't had a seizure since. I hope everyone does well.
Hi Becky,

Thanks for your reply! I am glad that you are seizure-free. I am hoping that my son Kyle will soon be without symptoms too.
Take care,
Lynn

 
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