TEMPORAL LOBE EPILEPSY- A LIVING HELL

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

noonespecialnz
New Member


Date Joined Feb 2006
Total Posts : 12
   Posted 1/15/2008 8:57 PM (GMT -7)   
hi ive been diagnosed by my phyc. that i have this condition.
it is a living hell,i get feelings of unreality and fear of death.
some stress has brought this latest episode on ,i have suffered for yrs with this condition,but was always put down to depression.
dont want to go into too much details right now,just want to know if anyone else has these unreality feeling and anxiety with there tle.
on too many drugs to mention

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 1/16/2008 3:31 AM (GMT -7)   

Hi there,

I think it is natural to have a fear or anxiety when you are first diagnosed and that wont go away unless you deal with it. For me, it was finding out everything I could about epilepsy. Knowing exactly what was going on made it less scary for me. Sometimes when you are trying to do something (Such as learning to drive - for me) which the fear stops you doing, you have to just grab the bull by the horns and go for it. Do you still currently have seizures on a regular basis?

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
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


beke
New Member


Date Joined Aug 2007
Total Posts : 8
   Posted 1/16/2008 12:43 PM (GMT -7)   
Hi!

I have to agree with Darren on alot of things.I've had epilepsy for 12 yrs. Right temp. lobe. I too tried to find out as much as I could on epilepsy, and it did help me in so many ways. Having epilepsy made me fearful of doing certain things, cause I always had the fear of having seizures in the back of my mind. Such as driving, too. Stopping at a red light would give me time to Think about "what if?" But you just have to take a deep breath and know that everything will be alright and calm down. I know, easier said than done. It all just comes along with the " E " package. Fear can get the best of you, but strength can overcome that all..

Take care & God bless,

Becky

mamason
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/10/2008 7:19 PM (GMT -7)   
My son has temporal lobe complex partial seizures and the behaviors and mood changes are common for him.  When medicated at the right dose he is great when he breaks through he begins showing signs of compulsions and obsessions, fidgeting, headaches, high and extreme emotions and mood swings, and anxiety.  He bites himself perseverates in actions and seems out of control.  He explains his body to have too much energy and it feels yucky.  The Epilepsy foundation explained that the increase in activity can increase symptoms of anxiety,m depression ect because there is a change in the electrical activity and chemical exchange in the brain.  THen to make sense of it you search for a context of why you feel this way because it doesn't make sense and then you worry more becuase your not sure why your worrying.  So it becomes a cycle seizures can increase the anxiety and then you become more prone to feeling out of control which produces more anxiety naturally.  When they explained this to me it made sense.  My son is not always anxious and feel this way but every so often it happens and then we see more pronounced signs of seizures activities and then we increase medication and then he feels better.  I think it is important to understand your brain and its functions and the complexity of it all!  Put things into perspective at times you may have more sensitivity to emotions your brain area being effected also effects your emotions and behavior. 

theteddybearcare
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/13/2008 6:23 AM (GMT -7)   

HELLO! tongue    I promise you it will all be ok.  Now that you know what is going on, all you can do is grow from it. 

I have Right temporal lobe complex partial seizures.  Was diagnosed 10 years ago.  I tried to do alot of research but couldnt find really what I was looking.  After a few years of "not getting it"  I tried to look for other people with the big E.   I have chatted with TONS of people over the last 6 or 7 years.  Some of them helpful some of them just time consuming LOL  I have actually flown to meet some of the friends and have had some of them fly and meet me also.  be careful with this ovbiously.  After 8 years of interesting stuff, 12 meds, a right temporal lobectomy, and a VNS, I am now married to a man who has beat the big E, have semi safely had a baby and own my own business.  I still have spells from time to time but I am ok with it. 

To actually get to your question,  are you sure your meds arent the reason for your *feelings*?  Have you talked to your dr about them and what are they saying?


deedle78
New Member


Date Joined Sep 2007
Total Posts : 4
   Posted 3/17/2008 10:30 AM (GMT -7)   
Hello I had temporal lobe epilepsy, also known as mesial sclerosis. At the age of nine i began having granmal status seizure. I am now 29. I was on a great number of Anti epileptic drugs. Anyhow I thought about havin surgery at the age of sixteen,but I admit I was to scared to. Well my seizures got much better anyways, at the age of 26 I thought the epilepsy was gone dont get me wrong I still took my meds. Well I realized I still had a problem at the age of 29  when I was havin some very bad gran mal seizures. So I decided to go for surgery. I had the surgery March 10 of 2008, it took care of the problem, which was mesial sclerosis of the temproal lobe.I am still takin Neurontin, Felbatol and Keppra but I do not know for how long. If your problem can be taken care of I suggest you go fot it.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/27/2008 7:04 PM (GMT -7)   
Hi there,
 
YES, I also had feelings of unreality, like I'm in a dream or something.  A sense of "deja-vu" was very strong when i had my temporal lobe seizures (left side, caused by a stroke).  I literally felt like I was losing my mind.  Those feelings brought on the anxiety attacks.  I know what you're going through.  It is hell.  Very upsetting.
 
My seizures ended after I had a horrific allergic reaction to Lamictal - a seizure medication.  My fever was so bad, and I had such a devesating rash, that my neurologists think my brain was actually fried to a certain extent.  Enough to fry the area of my brain that was having the seizures.  That's the only explaination they could give me.  That or divine healing! (I like to believe it's that!).  Anyway, it took a life threatening allergy for my seizures to stop. I haven't had one in 9 months.  Crazy. But I did have them for over 6 years.
 
I hope you get the treatment you need.  I also hope you know you're not alone. 
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


deedle78
New Member


Date Joined Sep 2007
Total Posts : 4
   Posted 3/27/2008 10:44 PM (GMT -7)   
Hi Ginny thanks for replying to my post. Anyhow I did get the treatment I needed,maybe to late in my life but I got it. It is known as a craninotmy surgery to remove a lesion on my right temporal lobe. That was the way to get rid of them dumb seizures. I hope u get the treatment you need and god bless you. Dee

scaramoche
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/11/2008 9:44 PM (GMT -7)   
not sure if this qualifies as "experience" but heck we all live with E. the deja vu, the fear, the aura, when these are occuring scare the hell out of me because i know whats occuring and whats going to happen. even worse is comming out my my grand mal's...the feeling of being in an alien place surrounded by nothing familiar, even your family and friends, your home, i recognize nothing,....sometimes for up to an hour....even then the logical part of my brain latches onto "that is my wife, this is my house" but something instinctual refused to believe it, it's like reality is disjointed and for me this can last for days before i feel "NORMAL". either way for some of us it can take years to come to terms with it, because it is a difficult road to travel. and only those of us who have walked it can really understand the fear and utter lonellyness. I guess thats why at this point in my life i wake every morning greatful, i look at the rockies and enjoy life....because even though i want to live forever, i honostly believe ive died every time i siezed, so that fear no longer grips me. but this is my road, but rest assured, this isnt a one way highway, but has many lanes, because there are so many of us who walk it, so roll down your window and let the road rage out hehehe. peace and love, because we all luv ya and understand.....i sure as heck do

A.U.R.E
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/13/2011 8:45 PM (GMT -7)   
Hey all,

I'm wondering if you guys could help me out. It's been a few years since I've had so many weird deja vu's. Every week it's like I have a memory caused by a smell, a picture, etc. and it's almost like the whole world just freezes while I try to catch that memory but I can't. My parents think I'm lucky, my sister thinks i'm physic and my friends think that my deja vu's are weird. Recently, during camp suddenly, it seemed as if the whole world was just a dream and that I was solo. Everything became blurry for a few seconds but, luckily, no one noticed so, I think it only lasted a few seconds. Besides that, while I was 'solo' (as I call it.) it seemed like my every breath was sucked out of me and when I unfroze, I lost my balance and fell down. It took me a few seconds to regain my breath and it happened again soon afterwards. I don't know if this is TLE because I don't have seizures whatsoever and a lot of other symptoms. The rest of the time I just feel like a normal kid. :P I hope you can help me.

Thxs,

A.U.R.E

BTW. I am 12 years old. Idk, if this could also be symptoms of TLE or whatever but, Both my parents are right handed and I am left. Also, I don't want to sounds self'centered but I am pretty good with arts. Like drawing, etc. (and the music and dancing kind too. :P)

SweetBelle
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/23/2012 12:04 PM (GMT -7)   
Hey

Despite the fact that I too am living with TLE, majority of the symptoms that most have you have described seem completely foreign to me. about a year ago my mental state seemed to implode. Literally over night I became overwhelmed with anxiety and this never ending dread. My mind constantly ran ahead of me and it seemed as though nothing else mattered, I was stuck in my own world. Coupled with the anxiety, I began experiencing major depression. It was then that I began picking at my skin. The doctors call it Dermitilamania and it falls under the OCD symptoms of TLE. This caused a major crash in my self-esteem and general mental health. I would pick my skin till the blood was running down my legs. When that wasn't enough I resorted to cutting to get some relief. Eventually my family started to notice, otherwise I hid it under long clothes. No one could understand why I did it. I didn't even understand. The only why I can explain it is that it is almost like a habit. You don't even think about it and when I was picking my whole attention was focused on that task and the pain that came from doing it. It was a relief because for that moment when I was picking, I would shut down to all the emotional turmoil and anguish that was constantly bombarding me. I saw a psychologist for six months, the same one my mother went to, eventually he realized that I was my mothers daughter. He referred me to a neurologist who picked up that I was suffering with TLE and that it was just starting to rear its ugly head. I was then put onto Lamictin, coupled with my anti-depressants. For the past four months things seems to be getting better. I was happy and normal again and I was finally getting used to living on my own. Of course I'll never be the same as before the TLE but in a way it forced me to grow up. BUT no matter what meds and how high the dose, the depression and the TLE are still there, waiting. Recently I have sunken back into the black hole. Of course in the beginning suicide seemed like the only way to get away from the turmoil in my mind but with the love and support of my family and God I realized that even when things seem crap and you feel out of control of your own mind and emotions, things always turn. Sure sometimes you feel great then the next time you feel like crap but the important thing is that you keep moving. Your body may reveal the scars and the marks of your disorder but thats just it, its a disorder it is not you! You are greater than any problem
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 12:54 AM (GMT -7)
There are a total of 2,735,199 posts in 301,283 threads.
View Active Threads


Who's Online
This forum has 151386 registered members. Please welcome our newest member, Kier.
183 Guest(s), 3 Registered Member(s) are currently online.  Details
THE HAPPY TURTLE, 142, Tall Allen


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer