Temporal Lobe Epilespy

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McNab
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/26/2013 7:02 PM (GMT -6)   
It took 6 years from first going to the doctor before i was diagnosed with Temporal Lobe Epilepsy (i shall write TBE from now on), but as soon as i received the diagnosis i realized all my life i was considered a bad apple basically in school because of my quirks if i can call them that, and always have a limited circle of friends as i never feel comfortable around people as most of my visual hallucinations were of people attacking me, which lead to incredible paranoia as they seem so real.

Even on meds i still feel strange sensations that feel like something is crawling on me (very rarely nowadays) but i can't describe how it feels to stare at your arm for example and see nothing but your brain is telling you something is there.

In addition every visual hallucination starts with a really intense feeling in my chest kind of like intense bursts of a rushing feeling and an extremely intense fear, which is really hard to explain to people face to face as it truly is a feeling thats hard to translate into words. That feeling is always followed by deja vu or Jamais vu i can never remember which to refer to, which results in the visual hallucinations above. Smelling things that are there is another one, for me it always seems to be like something freshly burnt.

I'm 26 now and have had this all my life and was finally diagnosed in 2012, after 6 years of being thrown about by the doctors from being mentally ill (crazy basically) to just plain extremely paranoid and over stating what i actually was going though. It wasn't until i started seeing a psychiatrist under doctors orders, the man said he was suspicious of me, as i listed the sypmtoms of a TLE seizure pretty much straight out of a text book. (Which on a side note really pissed me of as if it was truly text book then why did so many doctors not pick up on it before)

Anyways still to this day even though the meds have my TLE under control i still struggle with my paranoia and deep distrust of other men, as i spent pretty much my entire life that i can remember having deja vu type situations of the people attacking me, even the psychiatrist i saw said i could suffer from all the thought patterns regarding the deja vu as i have spent my entire life pretty much always thinking like this, it would be extremely difficult even with a psychiatrists help to alter literally the way i think, as he said its basically so engrained now.

At my very worst my most seizure intensive times, i literally locked myself away in my house, doors locked chair against the door, curtains closed, listening to TV/Music/Games permanently though headphones. As i would had the "visions" of the attacks multiple times a day.

I know this all seems extremely stupid and i've heard the man-up and get a grip of yourself my whole life, but now the meds control it, even now if i have the odd episode, i know excatly whats happening but whilst its happening no matter how hard i concentrate telling myself what it is, you know whats causing it etc i can't stop my brain overriding my logic and i still can't shake the feeling of intense fear that accompanies the episodes, although shortly after they finish i'm but in control (so to speak) and im back to the closest i can get to being normal again.

Its safe to assume everybodies seizures are different in many ways but i was just wondering if theres anybody out there who can relate to this, as i just feel, out bluntly, alone. I can't speak to anybody i know as i've already got the big label slapped to my forehead, and i don't want even more things put out there to people i know as i already know how people reacted to me & treated me before i was diagnosed, I don't want that to return as all people know about my condition is its name. (As after all mentioned above broke down my marriage i moved so no-body knows about it).

Again is there anybody who suffers or has suffered anything similar and how if anything do you mange it all, as i've ran out of things to try, and im literally down to a single friend & and thats my sisters husband. I'm lost and have exhausted all the things i can think of, to become as normal as i can be, and be just another person in the crowd so to speak.

Sorry for the wall of text & and im grateful if you suffered it all to get this far

With Regards

McNab

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10404
   Posted 11/26/2013 8:15 PM (GMT -6)   
Wow, I'm so sorry you have to live with this. I've never experienced a seizure of any sort, but worked with a lot of children who did have seizures. I get the fear, as I saw this sort of reaction in a three year-old girl once; she was subsequently diagnosed with TLE. Her terror was very obvious, very real and very unresponsive to any sort of reassurance or interaction.

I do wish I could be of more help, and hope someone else with a similar experience will be here to provide you with support. You're a brave man to have dealt with this for your whole life.
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JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 1/10/2014 7:47 PM (GMT -6)   
Not really sure what you're looking for, but I had TLE for 19 years before being diagnosed. Earlier forms had Deja Vu followed by short term memory disruptions only for names. Weird. I had aura but only independent of the seizures, i.e., when I had the aura, no seizures, when I had seizures, no aura. The aura was believed to be Migraine (visual) and my neurologist says that a fine line sometimes separates the two, so when I was prescribed Phenytoin for the seizures, the Migraine also went away.

Eventually the seizures worsened, it would be the 19th year of having them. I was getting aphasia, my throat felt anesthetized, and I had at least one auditory hallucination (I heard the sound of a T.V. game that was popular at the time blaring in my head). I was having profound symptoms at this time, yet my neurologist refused to do anything more, relying on the good results of an MRI to insist that nothing was wrong. I went to another neurologist, he quickly arranged for a 24 Hour EEG, finished that, it showed seizure spikes from the time they first put it on. He prescribed Phenytoin and for the first time in 19 years I finally had relief.

Let me know if you (or anyone) has questions about my experience with TLE.

labeachbum
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 1/30/2014 10:35 PM (GMT -6)   
I'm so glad I've found this informational site! I have had "deja vu" for years and years (I'm 62) and yet I've never been able to explain the sensations to anyone so they would understand. This has helped me so much just to read the other experiences. I can go for months and months without experiencing them, and then boom! I've had 4 episodes today, a couple of serious ones. I am thankful I found this forum.

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 1/31/2014 12:15 AM (GMT -6)   
Hi Labeachbum,

I even had a theme in my seizures, when they would start, it was the deja vu, I really hated that, it was so strong, so hard to shake. Then I would get a feeling of a popular magazine I used to read as a kid. Doctors would ask me for specifics about the magazine, but it could not be explained. (It was weird). I didn't feel like I was reading it, just a feeling about it. The memory disruptions would follow, just formal names. I was fully able to get around during the seizure, even driving. I could go from one place to another without getting lost, but names were wiped during the seizure. I would phone my wife, pushing the buttons by rote, not aware how I knew the number, I'd comment to my wife about it every time, telling her while I was having the seizure that I didn't know how I knew the number. The doctors thought I was disassociating, and I spent years in therapy. The irony is that one of the psychiatrists at the facility I received therapy from gave me a prescription for Dilantin, the very medication I take today, but my family doctor told me not to take it. Had I not listened to my family doctor and taken it, I would have cut 8 years off the 19 that I had seizures for.

Have you been seen by a doctor?

labeachbum
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 2/1/2014 1:23 PM (GMT -6)   
No, JungRulz, I just figured out what this is 2 days ago, on Thursday. Dilantin, huh? I had 5 episodes Thursday, read online and found this forum Thursday night, and had 5 more on Friday. Today, Saturday, none so far. I will go months and months, maybe a year or more without having any!

Thank you for the help!!!

labeachbum
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 2/1/2014 1:32 PM (GMT -6)   
Can the forum moderator please correct the spelling of "epileSPy"?

:) Thanks.

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 2/1/2014 2:00 PM (GMT -6)   
Hi Labeachbum,

Deja Vu isn't limited to those with seizures, it can be normal for some (though at a limited frequency), psychological, or other causes I'm sure. People with temporal lobe epilepsy (TLE) do get them as a symptom as well as other symptoms characteristic of TLE.

Here's a download (or it will open in your browser depending on your operating system) that discusses Deja Vu, you may find it interesting.

pn.bmj.com/content/3/2/106.full.pdf

I remember reading that Deja Vu may be a misdirection of perceived conditions directly to memory, with the perception of the condition from memory, we have the feeling we experienced the situation before.

If you have it frequently you may wish to speak with your family doctor first. If he/she doesn't take your situation seriously enough, you can consider directly consulting a neurologist. At least if your doctor/s clear you, you can pursue other avenues of treatment.

rob_dj
New Member


Date Joined Apr 2014
Total Posts : 2
   Posted 4/19/2014 12:01 AM (GMT -6)   
McNab, your description of your seizures sound nearly identical to mine. The feeling of deja vu, The feeling of something crawling on my left arm...everyone used to tell me I looked like I was brushing cobwebs/spiders off of my arm, intense fear, the smell of something burning. When I begin having seizures at age 11 it was always while I was watching television. I would stand up and start spinning in circles until someone stopped me. Then I would go lie down and sleep for several hours. I also had the staring seizures. As I got older mine progressed from petite mal to grand mal at times. I'm 48 now and my dx at this time is partial complex originating in my Right Temporal Lobe. A simple partial which sometimes go on to become grand mal. I am on Keppra, Lamictal, carbatrol, for seizures. Also plaquenil for sjogren's syndrome and Reynauld's.

SpaceyCase
Regular Member


Date Joined Oct 2004
Total Posts : 47
   Posted 5/5/2014 2:00 PM (GMT -6)   
Hi McNab,

I don't know if I've had TLE all of my life, but I can pinpoint my seizures to starting when I was in my early twenties at least, possibly sooner. It is difficult because before I was diagnosed I had no idea what was going on.

I can very much relate to your experience of being mis-diagnosed. In fact I was later told by my epileptologist (such a WONDERFUL feeling to eventually see someone who specialized in TLE!) that this is sadly very common. He sat down with me and went through my history: random waves of anxiety accompanied by visual hallucinations, feelings of deja vu and "strangeness", feelings of floating out of my body and tingling, stretching arms, butterflies in my stomach. Sometimes I would even get a pleasant, light feeling happen to me later on. When all of this first started happening to me, even *I* thought I was going nuts. I mean... I didn't feel nuts, but I knew something was wrong. I went to a number of doctors and I was put on anti-depressants, anti-psychotics and even stimulants. They just threw it all at me. It was awful.

Perhaps not too surprisingly - with an undiagnosed seizure disorder - I started seizing WAY more frequently. Eventually, at a friend's wedding no less, I had a convulsive seizure right in front of a ton of people. It sucked, but it finally got me on the path to the correct diagnosis. I was tested with EEG which came back positive. This was still completely unexpected to me - up until then I was under the impression I was having some weird depressive symptoms. After that I went through the long, long path of learning about what was happening to me and going through medication changes and adjustment.

Its been ten years since my diagnosis. Fortunately for me, I am able to manage my seizures fairly well with just medication. This isn't perfect though, and a couple slip through the cracks. My doc and I have discussed surgery, because it is something he does - and in his mind a treatment should be perfect. In my mind I'm not yet ready to have my brain cut into. So.... this is on hold for now :P

Sometimes I will go a long while seizure free and I will feel great and "normal" and strong. I stare and my meds and wonder why the hell I take them. Then when that feeling crawls up my tummy and one hits, I'm instantly reduced to weakness and I remember all over that I'm just .... different.

So yeah... I get what you mean... you want to feel normal, but you don't, and your diagnosis path certainly didn't help. TLE is different in some ways I think because the area of the brain it affects is associated with a lot of emotion. This is often fear (definitely doesn't help with feelings of paranoia or anxiety), but sometimes it can be pleasure too. So even though it is a disorder - it is out of your control - residual feelings are still left there because you FEEL them and you are aware of them. It is powerful.

I actually study psychology now, and neuroscience on the side... part of my side interest in this was sparked because of my diagnosis. I needed to "get" what was happening to me. Sometimes I feel like it hinders me because of the associated memory issues... I feel slower than I used to feel.... but I also work harder at it, and it makes me passionate.

So I guess that is my ultimate answer in how I manage - I embrace who I am now and what I have because it is what it is. And I try to understand it the best I can, and just work on acceptance continually.

fnfiacco
Regular Member


Date Joined Apr 2014
Total Posts : 66
   Posted 5/9/2014 6:55 PM (GMT -6)   
well i have a similar issue but i never had the bug crawling sensation.
my first two were in the right temporal lobe my third came normal and my fourth came abnormal but never told me what side of my brain just said it was generalized.

mine happen in night and in the day. in the night its more severe and i sometimes dont remember them. i wake up screaming or falling out of bed pounding the ground and feeling terrified. sometimes my dog knows when im going to have it before it happens she will bark loudly at me and then lay beside me not wanting to leave my side!

in the day time i will be fine playing tennis or shopping then suddenly i feel strange. i feel like i am a robot and so is everyone around me. part of me is there because i can say places and names but say when it happens i feel completely detached from everything like i am a computer but my soul has disappeared from my body and i panic thinking im never coming back and i act strange either running in the street or asking for help. I remember these episodes. also sometimes it appears like a panic attack i feel my heart pound i feel i have to take my clothes off because im suffocating and hot. bright fluorescence lights trigger mine as well as crowds, anxiety, and driving with lots of traffic and noise.
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