Temporal Lobe Epilepsy?? anyone out there?

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sstalkz101
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 4/19/2007 7:07 PM (GMT -7)   
i have them every month around the same date almost exactly... It starts at the beginning of the day,
when i feel sick to my stomache, and i have a funny taste in my mouth. i go on for most of the day feeling like this. I also have an intense feelin of deja vu. then usually once or twice in that day depending. I get a minute or so, where, My girlfriend, or some of my buddies say I repeatedly smack my lips or make a chewing motion. I never remember doing that. I also say this phrase usually like "What do you want me to do" and it doesnt matter what they say, i respond with that phrase. Its always that what do you want me to do phrase. and just have that chewing motion. usually after i say something, or after smacking my lips, after a few mintues i feel fine..i still feel a little confused for a bit. It seems also in that time i go into a blank stare while im doing those things. My awareness seems a little dampered. it can happen a few times in that day, and sometimes I dont even remember when it happened so im not sure how many times it happens in that day. usually i remember what happened and my awareness isnt affected too much. once in a while i get headaches. This has been goin on once a month, for about the last 9 or 10 months. I also have been getting a little forgetful, like asking the same question right after asking it a first time..

I Just seen a doctor today, who sent me in to get some bloodwork. Also I will be getting an MRI in the upcoming days. I think what I have is simple partial or complex partial. Ive read about some people getting misdiagnosed, or docs gettin the problems confused with anxiety. Has any experienced anything like this. And any adivce in the up and comin days, while Im being reviewed by some doctors, or about getting my mri... If there is any common experiences, input or advice, I would love to hear it.. Thanks


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 4/20/2007 7:29 AM (GMT -7)   
Hi there and welcome to Healingwell,
 
From what you describe, it sounds more like complex partial than simple partial. As a general rule of thumb simple partials involve no loss of consciousness and complex partials do. Seeing your doctor was a good step to take. Hopefully the MRI will show where in the temporal lobe the seizure is occuring. If my anatomy is correct (and being a Psych student I really hope it is!) there is an area in the temporal lobe called Wernicke's area. This is an area connected with speech production and its possible that this may explain why you recycle the same phrase all the time. You say it happens about the same time every month... Is there something that happens to your body around the same time each month? It doesnt have to be a body cycle, but could be anything routine. Just as an idea, are you someone who has like a curry night once a month? I hope you get some positive feedback from the doctor and keep us up to date with your progress.
 
All the best
 
Darren
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sstalkz101
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Date Joined Apr 2007
Total Posts : 12
   Posted 4/20/2007 8:42 AM (GMT -7)   
Thanks for the warming welcome. Ive been worried, and havent really hazd any support. I also havent seen a doctor since the problem started. I am trying to think if what may trigger it to happen around the same time every month, but I cant really think of anything.

sstalkz101
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Date Joined Apr 2007
Total Posts : 12
   Posted 4/20/2007 9:16 AM (GMT -7)   
Update: I have just recieved word that my MRI will be on monday, and I will psot the results soon as I find out. THANKS

djdaz_1985
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   Posted 4/20/2007 9:44 AM (GMT -7)   

Hiya,

Glad to hear that you got an MRI date so quickly. I hope everything goes well and that it can give you some answers. I would carry on thinking to see if there is a monthly event though... If its something you take for granted that it happens, it doesnt alwys come to mind straight away.

Good luck for Monday

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
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Kevinsgirl11
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Date Joined Apr 2007
Total Posts : 3
   Posted 4/20/2007 8:50 PM (GMT -7)   
Hey there...I get that "funny taste" sensation, too...at first I just thought it was part of a migraine aura, but I've been getting that without a migraine following...and it's happening more often recently (which corresponds to my increasing occurance of "spells", as the neurologist put it).  I'd be interested to know if there is a connection- they aren't sure if I've been having absence or complex partial seizures, but my MRI isn't until September, since I'm going home for the next four months.  Please keep us up to date, and I'll keep you in my prayers.  I hope everything goes well for you on Monday- best of luck!
 
 

sstalkz101
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 4/24/2007 5:42 PM (GMT -7)   

hello everyone, Thanks again for your support and interest. I have just finished my mri yesterday. I will be going over it with my doc on thursday morning. I post the results soon as i get a chance.

Thanks,

Sean


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 4/25/2007 5:38 AM (GMT -7)   
Thanks for keeping us up-to-date Sean. I hope everything goes well for you.

Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


sstalkz101
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Date Joined Apr 2007
Total Posts : 12
   Posted 4/26/2007 1:08 PM (GMT -7)   
Hi. So it turns out my MRI is clear... My doctor said thta he doesnt think its epilepsy...so i will be getting an eeg soon, hopefully that helps for figure out whats wrong with me...does anyone know about an eeg, and how it may help them determine whats wrong with me? Im a little frustrated always getting normal test results..But its clear that somethign is wong with me

sstalkz101
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 4/26/2007 1:17 PM (GMT -7)   
I was just wondering about the eeg... Do i need to be having a seizure in order for them to see what the problem is?

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 4/26/2007 3:14 PM (GMT -7)   

Hiya,

You dont have to have a seizure in the conventional sense. After they have attached the wires to your head, they perform different tasks (Such as a flashing light at different frequencies) which cause the brain to produce electrical impulses in the same manner as a seizure. (Thats the very simple version of an EEG anyway) This is whats recorded on the paper.

I hope this answers your question

Darren

 


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sstalkz101
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 4/30/2007 9:13 AM (GMT -7)   
NEW UPDATE.....
I have been notified that I will be getting my eeg thursday morning at 730 and then seening the neurologist at 1040.... hopefully they figure out whats wrong...  Ill let you know if i get a diagnosis, or whatever else goes on.
 
Are the eeg tests accurate? Im sick of getting normal test results... I want a diagnosis.. Even if Im feeling normal will they find a problem?
 
wish me luck everyone.
 
Sean

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 5/2/2007 5:26 AM (GMT -7)   

Hi Sean,

EEG's are known to be pretty good in terms of reliablity etc... Even if you are feeling fine, they should be able to find something. (They always seem to manage when I have one!) I hope all goes well and you get the dx you want.

All the best

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


sstalkz101
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 5/3/2007 5:00 PM (GMT -7)   

Just returned from the specialist... HE diagnosed me as having complex partial seizures. The eeg said I had abnormal results in the temporal region. I may haave some leisions in that area, or a tumour, or maybe scar tissue, or it could be shrinking. The neurologist wants to see my mri, and the gp i seen could have looked at it wrongly...I will be seeing an epilepsy specialist asap, and we will try to find out the cause of my seizures. Also my drivers licence was taken away.

 

I was given CARBAMAZEPINE to take. Anyone know about this drug?


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 5/4/2007 1:28 AM (GMT -7)   

Hi,

Im glad to hear that you have got your dx. Hopefully this can be the start of a successful treatment plan for you. I have taken Carbamazipine for 8 years or so. (Since I was dx). Are you taking the standard version (Often called Tegretol) or the slow release version (Often called Tegretol Retard)? I used to take the standard version but I found it didnt work after a while (Puberty may have been an issue here!) and the doc put me on Retard. (Lovely name dont you think!?). I have have very few problems since. (The only problem I had was solved by increasing the dose). That said, it doesnt suit everyone so it is important you look out for any contra-indications.

I hope this helps. If you need any more information, let me know.

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


sstalkz101
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 5/4/2007 9:49 AM (GMT -7)   
Hi, Im not actuallly sure what type... it says apo carbamazepine 200 mg.. . I am to take it morning and night... so it will be two doses of 200mg per day, bu the doc told me to take one pill a day for the first week.
As to what kind of release I don't know

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 5/5/2007 12:57 PM (GMT -7)   
That seems like a very low dose, but im not a doctor. I take 800mg twice a day. (Of slow-release Retard). If you want to know what type your meds are, it should say on the leaflet/box if they are retard (Slow-release)

Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


sstalkz101
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 5/7/2007 5:55 PM (GMT -7)   
well, Ive never taken any meds before... and I cant just start off taking 1600mg a day. I have to work my way up. So I think this is a good starting dosage..

sstalkz101
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 5/7/2007 5:58 PM (GMT -7)   
oh thanks for all your input and support by the way.. Ill post up on here again if anything new happens, or I get more information from the specialist.

THANKS EVERYONE :)

SEAN

disciple
New Member


Date Joined Jul 2007
Total Posts : 8
   Posted 7/26/2007 7:32 AM (GMT -7)   
I was diagnosed with temporal lobe epilepsy in 1990.  I also have simple partial seizures.  I know when they are coming--which is a good thing.  I wish people were more educated.

kman78
Regular Member


Date Joined Jul 2006
Total Posts : 74
   Posted 7/26/2007 9:07 PM (GMT -7)   

HI,

It really does sound like you are having complex partial temporal lobe seizures.  When you smack your lips and repeat a phrase, those are called automatisms.  This is the time when you have lost consciencesness.  In fact, those are the same automatisms I do, as well as moving my left leg.

I also take tegretol, and get fairly good control.  200mg twice daily is a good starting dose.  You want to start out slow, because there is a chance it might cause some liver problems.  Also, it may cause some significant side effects in some people. 

You may want to ask the doctor if the mri was ordered as an epilepsy protocol mri.  They will do smaller slices through you temporal region to see if there is a abnormality.

I hope you are able to obtain good control,

kurt

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