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    Old 06-13-2008, 01:09 PM   #1
    Nickle00
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    I think I have Temporal Lobe Epilepsy

    Last December I had a sleep test done because I kept waking up in the middle of the night feeling like I was having a seizure or something but it would only last a few seconds and I'd never be able to stay awake afterwards. For the last several months I've had re-occuring deja vu on an almost daily basis and today it was SO freaking weird it totally freaked me out so I googled re-occuring deja vu and came up with temporal lobe epilepsy which would explain my deja vu AND my seizure like feelings I was having before PLUS I did meth back when I was younger (Been clean for 5 years!) and meth is also linked to Temporal Lobe Epilepsy. Do you know anything about it and if you do and I DO have it do you know how it would be treated?? Thanks!! Peace & Love!!

    P.S. I have a Doctor appt. on Monday

     
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    Old 06-13-2008, 02:59 PM   #2
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    Re: I think I have Temporal Lobe Epilepsy

    It does sound rather like it.

    By sleep test do you mean EEG? In suspected epilepsy one is performed to try and get an idea of how much excess activity there is, so to speak, although you can still have epilepsy with a *clean* EEG. But your neuro might want to run one, and an MRI, to rule out structural abnormalities.

    I have Primary Generalized epilepsy - I get grand mals (well, none for 9 months thanks to Lamictal, but you know what I mean) as well as TLE seizures, which I still struggle with....I know precisely what you mean about the deja vus. Luckily they are now under control and I mainly suffer with flashbacks (as in, I get spells of "forced memories" randomly from my childhood which are COMPLETELY neutral, no trauma, no Post Traumatic Stress or anything at all) which are uncomfortable and make me feel a bit sick, I'm trying to figure out what to do about them, I think stress makes it worse so I'm trying to relax!). My own EEG showed *excess activity everywhere across the brain*..well its good to know I have an active brain I guess, lol.

    Anyhow...

    Yes, its likely you'll get an anticonvulsant if its been a persistant problem, and its not deja vu as a result of anxiety/mental illness (very unlikely, I reckon it's TLE stuff). I don't know much about meth, but if it's done any permanent damage, I think your doc will want to investigate that...obviously you'll tell them your drug history to help 'em out.

    Might be helpful to keep a diary of events? Like... Time, Place and Duration of the Deja Vus? I didn't but I think it would have been helpful, to gauge exactly how often they occured. Although sometimes it was on/off all day and it all blurred together...you're not alone. It can be treated. Keep us posted!

    Last edited by EmmieEmmie; 06-13-2008 at 03:00 PM.

     
    Old 06-16-2008, 12:37 AM   #3
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    Re: I think I have Temporal Lobe Epilepsy

    Okay, So it's 2:30 in the morning and I've already woken my BF up twice screaming from nightmares. I haven't had nightmares like these since the last time I dealt with all this B.S. in Dec. Not sure if I'm just worried or what (dr. appt's tomorrow). I even dreamt I was having deja vu....and that I was scizophrenic...(I haven't ever had ANY mental health problems in my past...not even depression) this is all getting too weird for me. They need to figure out what the hell is wrong with my brain. I'm too scared to go back to sleep and I've already been up for an hour crying ......I feel like such a dork dude!! My BF's gotta get up for work in 3 hours and he's gonna be SO tired. I know my damn Doc is only gonna refer me to a neuro so I won't get any results tomorrow anyways!! Boo!! If these nightmares start up again I won't be sleeping either. Looks like you'll have another midnight poster.

    Last edited by Nickle00; 06-16-2008 at 01:27 AM.

     
    Old 06-16-2008, 08:45 PM   #4
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    Re: I think I have Temporal Lobe Epilepsy

    Quote:
    Originally Posted by Nickle00 View Post
    Last December I had a sleep test done because I kept waking up in the middle of the night feeling like I was having a seizure or something but it would only last a few seconds and I'd never be able to stay awake afterwards. For the last several months I've had re-occuring deja vu on an almost daily basis and today it was SO freaking weird it totally freaked me out so I googled re-occuring deja vu and came up with temporal lobe epilepsy which would explain my deja vu AND my seizure like feelings I was having before PLUS I did meth back when I was younger (Been clean for 5 years!) and meth is also linked to Temporal Lobe Epilepsy. Do you know anything about it and if you do and I DO have it do you know how it would be treated?? Thanks!! Peace & Love!!

    P.S. I have a Doctor appt. on Monday
    Hi, I had right TLE for 20 yrs and I had the same feelings every night but worst deja vu during the mentrual cycle. I had complex partials but not grand mals, and I too would wake up having a seizure, it woke me up and put me back to sleep (weird).. Anyways sounds like seizure to me, and a neuro is your solution, make an appoin ASAP get more testing done as the EEG and he/she will prescribe the correct meds for you. Meds never helped my symptoms nor stop my seizures (so I had surgery last year, now Im free), but it should help you. Best of luck...
    Laura

     
    Old 06-17-2008, 06:38 AM   #5
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    Re: I think I have Temporal Lobe Epilepsy

    Quote:
    Originally Posted by 030free View Post
    Hi, I had right TLE for 20 yrs and I had the same feelings every night but worst deja vu during the mentrual cycle. I had complex partials but not grand mals, and I too would wake up having a seizure, it woke me up and put me back to sleep (weird).. Anyways sounds like seizure to me, and a neuro is your solution, make an appoin ASAP get more testing done as the EEG and he/she will prescribe the correct meds for you. Meds never helped my symptoms nor stop my seizures (so I had surgery last year, now Im free), but it should help you. Best of luck...
    Laura
    Thanks Laura!! I have an MRI scheduled for Wednesday and a neuro appointment to follow. Did having TLE affect your daily life in any way?

     
    Old 06-17-2008, 07:56 PM   #6
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    Re: I think I have Temporal Lobe Epilepsy

    to be honest not really, I went out, went to school and everything fine aside from some auras during the days which did bother me. Especially during the night, during Rem sleep I found myself fighting the auras more and during the morning hours. Two weeks prior to my periods which were abnormal i would get sick with seizures from 3 to 16 max a month. Other than the hormone problems i learned to deal with the problem although subconsciously I knew they were there ready to strike at any time. All together I guess I had learned to settle to live with them, until the option for surgery came along and helped me. Now I understand how hard it really was How about you? Hows your day like and how your feeling?
    Laura

     
    Old 06-18-2008, 10:54 AM   #7
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    Re: I think I have Temporal Lobe Epilepsy

    Quote:
    Originally Posted by 030free View Post
    to be honest not really, I went out, went to school and everything fine aside from some auras during the days which did bother me. Especially during the night, during Rem sleep I found myself fighting the auras more and during the morning hours. Two weeks prior to my periods which were abnormal i would get sick with seizures from 3 to 16 max a month. Other than the hormone problems i learned to deal with the problem although subconsciously I knew they were there ready to strike at any time. All together I guess I had learned to settle to live with them, until the option for surgery came along and helped me. Now I understand how hard it really was How about you? Hows your day like and how your feeling?
    Laura
    Well, normally I'm fine. I haven't actually been diagnosed yet but I get deja vu (which I'm guessing are auras) just about EVERY day and it's just weird and it DOES bother me. Not physically but mentally it does. It makes me think something's going on or there's something wrong or there's some REASON I'm having it at the time I am. They seem to be lasting longer now too which is another concern I have. Usually deja vu is experienced for a split second and lately, I've been experiencing for several seconds (15-30) but last Friday the one I got had to last a full minute.

    Once in a while I'll wake up in the middle of the night with my head jerking too. (I can't say for sure if that's ACTUALLY happening or if it just FEELS like it) I am about 98% sure it IS happening though. When that happens I also have bad, bad nightmares and then I get anxiety about going to sleep.

    Normally, I have no problems with anxiety or anything like that it's only when I have these stupid "episodes" I get scared to go to bed.

    I have my appt. today. Hopefully, I'll find SOMETHING out!!

     
    Old 06-18-2008, 09:04 PM   #8
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    Re: I think I have Temporal Lobe Epilepsy

    Nickle00 Im glad to hear you have the appoint today hope the neuro can help you. I does sound to me like auras because I too had lots of deja vu along with anxiety attacks, but it's hard to diagnose anyone who has not had a seizure yet, but let's see if the EEG still shows something (not that that's good hopefully not) but so you can atleast have an answer. It could also be a lot of stress, and the brain releasing it through these deja vus well doc will tell us. Let me jnow how it goes...
    Laura

     
    Old 06-22-2008, 01:29 AM   #9
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    Re: I think I have Temporal Lobe Epilepsy

    My MRI came back normal. I can't figure out if I should be upset or happy about this. Of course I'm relieved there's no major issues but then again it's almost as though I'm back to square one. The deja vu has seemed to subside for now.... I haven't had it in a few days. My Dr. still wants me to see a neuro so I have an appointment on Friday. If this deja vu and the jerking in my sleep HAD been seizures would there have been ANY damage to the brain or ANYTHING on an MRI that would have shown us that? Thanks! Nicole

     
    Old 06-22-2008, 09:20 AM   #10
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    Re: I think I have Temporal Lobe Epilepsy

    Hi Nicole, when I was first diagnosed with temporal lobe epilepsy I had similar problems as you. Noone believed me because I didn't have any tonic clonic seizures and they weren't as noticeable. My question for you is after these deja vus are you confused? I know when I have seizures as I recover I don't know what day it is where I am or what time it is. It's kind of like when you accidentally fall asleep and then wake up, but the confusion seems to last longer, this is how I can tell I had a seizure. You need a witness to observe you as you have a seizure to see if you have automatisms eg swallowing, chewing, picking at clothes etc. Good luck and keep us posted on your progress.

    Penny

     
    Old 06-22-2008, 04:05 PM   #11
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    Re: I think I have Temporal Lobe Epilepsy

    Quote:
    Originally Posted by Nickle00 View Post
    My MRI came back normal. I can't figure out if I should be upset or happy about this. Of course I'm relieved there's no major issues but then again it's almost as though I'm back to square one. The deja vu has seemed to subside for now.... I haven't had it in a few days. My Dr. still wants me to see a neuro so I have an appointment on Friday. If this deja vu and the jerking in my sleep HAD been seizures would there have been ANY damage to the brain or ANYTHING on an MRI that would have shown us that? Thanks! Nicole
    Nicole this is your best option, an MRI is not going to show much atleast not if you have no specific head injuries present, what you need as I mentioned to you before is an EEG done, which the neuro will set you up for. This is better at detecting your brsin waves, an any abnormal waves that can signal any epilepsy. I believe you have these episodes and they are very irritating as I been there, but trust me the neuro is the best to figure out and diagnose these symptoms. Write the times of day you get these deja vus and the activities your doing during these episodes and bring them to the appoinment, this will help the neuro understan better and put the pieces together. Wish you all the best and trust they will get you answers
    Laura

     
    Old 06-23-2008, 07:27 AM   #12
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    Re: I think I have Temporal Lobe Epilepsy

    Quote:
    Originally Posted by 030free View Post
    Nicole this is your best option, an MRI is not going to show much atleast not if you have no specific head injuries present, what you need as I mentioned to you before is an EEG done, which the neuro will set you up for. This is better at detecting your brsin waves, an any abnormal waves that can signal any epilepsy. I believe you have these episodes and they are very irritating as I been there, but trust me the neuro is the best to figure out and diagnose these symptoms. Write the times of day you get these deja vus and the activities your doing during these episodes and bring them to the appoinment, this will help the neuro understan better and put the pieces together. Wish you all the best and trust they will get you answers
    Laura
    Thanks Laura!! They did an EEG in December at the same time they did the sleep test but it didn't show any abnormalities. I have an appointment with the neuro on Friday so I'll post then to let everyone know what he says. Thanks again. Peace & Love!!

     
    Old 07-05-2008, 08:38 PM   #13
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    Re: I think I have Temporal Lobe Epilepsy

    Hi i did the neuro appoinment go? what he said?

     
    Old 07-11-2008, 01:19 PM   #14
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    Re: I think I have Temporal Lobe Epilepsy

    Quote:
    Originally Posted by 030free View Post
    Hi i did the neuro appoinment go? what he said?
    I FINALLY had my appointment with the neuro today!! He's suspecting partial seizures and wants me to do a 48 Hour EEG. I don't know how I feel about it yet. I need to see how much it's going to cost because I don't know if it will be do-able...financially. The last time I had an EEG and a sleep test it was almost $1500 after my insurance and it didn't tell us ANYTHING....AT ALL!! I could figure out a way to pay for the medical bills, I'm sure but I am NOT willing to pay another $1500 for nothing...I just can't afford that right now. I don't know what to do....

     
    Old 07-22-2008, 09:35 PM   #15
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    Re: I think I have Temporal Lobe Epilepsy

    Hey sorry took so long to reply, but I think you should do the 48 hr EEG. In regards to money, cant you still try to speak to the hospital's payment center and see if you can still apply for charity care for this bill only? they do have plans that can allow you to pay in portions and others that will pay a certain percentage. Ask them because you need to take this test, dont delay it due to money ask your neuro what other options are there. Let me know how things are going so far.. Best of luck
    laura

     
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