Temporal Lobe Epilepsy -- anyone else here?
 

Hello! I just joined now after finding this forum when googling Gerschwin's Syndrome.

I found out, after a lifetime of having weird spells, that I have Temporal Lobe Epilepsy (left-side) very recently, like a year or so. I'm not taking medication since I haven't had one for a long time, but I've had them since I was a very, very young child. Except for the hyper-religiosity, I've got every single personality marker as well. Lousy memory, olfactory hallucinations and a very precise and vivid sense of smell, lefthandedness, synaesthesia (scent/taste/color), enhanced abilities with mathematics and numbers, enhanced creative abilities, hypergraphia, the works. (I'm a bit weird in all senses, though -- I've been tested at 0.375 Hz tonal discrimination as well and have to plug up my ears to sleep, and while I'm nearsighted, I can color-match to an almost creepy degree.)

It's reassuring to find out that there might be other people out there with it, but I've never met any in person, and I'm worried about trying to since publicly claiming the Big-E word freaks people out. I was terrified when I started realizing that I needed to be evaluated for it that I would be legally forced to be medicated or lose my driver's license, and that the medication would make me lose the abilities I have that seem to be related to TLE. (I became functionally literate in Welsh in about three months and have always been able to learn languages and math like drinking water, effortlessly.) I was scared out of my mind that I'd have to choose between that and working for a living, and it effed me up for a few months before I finally decided I had to get evaluated. Like I said, employers and doctors freak out when they hear the E-word, and I was scared even to mention it for fear I'd lose my rights. This is on the borderline of a "mental illness" in a lot of people's eyes, and mental patients often lose a lot of rights and privileges.

The story of how I realized I had it is its own tale, but for the moment, I think I'd just like to connect with other people who have it and learn a bit about you. This looks lots better than the last epilepsy forum I found which was run by a guy who didn't have it but whose kid had it, and while I admire parents with special needs kids, they can be incredibly condescending when they try to adopt the "because I'm daddy and I say so, honey" tone of voice with total strangers. I'd really like to hear from people who HAVE it, and not people who have kids who have it. I want to talk to others like myself.

Anyone else out there?

Temporal Lobe Epilepsy--anyone else here?
 

Hi there!
It sounds like you feel very alone so I thought I'd log in (first message only just joined) and tell you a bit about myself!
I was diagnosed with TLE at the end of Sept 07 after like you years and years of funny episodes. I have different symptoms to you but with several abnormal EEG's and an MRI which showed ischaemia on the Left T Lobe the diagnosis was given. I am supposed to be taking Lamictal but havent summoned up the courage yet as I react badly to meds. I've been on anti depressants for years and also have vertigo attacks. They are so terrifying that I daren't risk anything making them worse.
The difficulty I have is that no-one seems to be able to explain which of my symptoms are E related. Therefore I dont know what improvement I would be looking for if I took the meds!:confused:
I get weird visual stuff like objects flying towards me really fast, i.e. if I'm washing up the bowl seems to come up to meet me at speed ...weird I know!
I get dizzy spells with shivering and also sudden intense fear accompanied by feeling absolutely freezing. Also since childhood I've had the dejavu thing.
Because I got the depression and the accompanying side effects of their meds it has made me very fearful, and I dont trust meds very easily!
Sorry to rabbit on but I feel for you and if you can relate to any of this or can explain to me what you think the main symptoms are I would be really grateful :)
babyjayne

I have had TLE since childhood, and you will find many here and on other sites who do as well. It is rather common in epilepsy circles. It also sounds to me like you both are still having seizure activity, probably Simple Partials. I called my first Simple Partials funny feelings. It fit thiose weird feelings. Deja Vu is also a Simple Partial seizure. Those funny feelings/weird feelings are actual seizures even though you are still conscious. If left untreated and allowed to continue, seizures get worse in severity. I say this since both of you are not taking medication. Epilepsy does not just disappear. It is a chronic illness and those are there for life. iI there happens to be another cause for your seizures that is treatable in another way, it is important to find that out and take care of it. The sooner the better. Even if your seizures stop for a while, it is not gone. and thinking that it is can cause you irreparable harm later. I still have epilespy even though I finally had surgery after years of continued seizures and have not lost consciousness since then. It took a few years of funny feelings and nocturnal seizures to push me into the next level of severity, Complex Partials where I did lose consciousness and bladder control as well. The next degree for me was Complex Partials with Secondarily Generalized features. How it gets worse is this. The healthy cells around the small area that is misfiring learn how to misfire, and seizures worsen from there if not treated, but there are much better treatments than there were. You both are sill having seizures I fully believe. I have a great ear for music and am good at math, so not all is bad. You could think of the color ability as a gift in a way. My music is, and I used those gifts to balance the fact that I had epilepsy when I was diagnosed at 14. I did take meds and still take one, but you play a huge part in making sure you take the steps needed to make sure you have the best quality of life possible. how your life is affected by your epilepsy depends on your choices in seeking proper treatment, learning to care for yourself, doing all those things to lessen seizures and allowing you the best quality of life possible. It is up to you. as well as I encourage you both to seek out an experienced, patient-oriented Comprehensive Epilepsy Center and see an board certified Epileptologist. Glad to meet you, and you are definitely not alone. CLosing your eyes will not help. It will harm you in a huge way. Tattoo

Hi There,
Welcome to the forum! I've had TLE for 35 yrs. now I started having sz. when I was 10 yrs. old (I'm 45 now). I started having absence (petit mal) sz. then I began having complex partial sz. 2 yrs. later. I have tried 13 or more AED's (seizure meds) but after having a DNA blood test I found I was drug resistant so I had brain surgery twice to help reduce my sz.
Now I often have many aura (simple partial sz.) where I get a nervousness in my stomach, see colors in my eyes, and sometimes hear one word repeated over and over again.
I agree with Tatoo the best thing for you to do is to go to a Epilepsy Center and see a Epileptologist. I've seen many different neurologists over the yrs. and take my word an Epileptologist has helped me the most and had me on the least AED's. One thing I found that was helpful is taking vitamin B12 1000 mcg. a day, B12 helps calm the nervous system down.
You mentioned that you are good at Math and that your are creative it's the left side of a persons brain that controls math, science, creativity, and art work. Where the right side of the brain controls emotions, English, writing, reasoning out problems, and music I learned all of this before I had brain surgery.
One thing you might want to do is stay away from anything with nutra sweet in it (ex. diet soda) it's been proven that nutra sweet causes more electricity in the brain which can lead to a sz. for some people. I found this out the hard way when I used to buy diet soda and ended up having many sz., another thing that can trigger sz. for some people is bright lights flashing, and a low pressure in the weather. Stress and lack of sleep are the 2 main things that trigger sz. for many people and sometimes if a person is sick with a cold or a virus it can trigger sz. also because the body chemistry is messed up.
If you're interested here's a couple of websites to check out:

www.epilepsy.com
http://www.emedicine.com/neuro/index.shtml#seizures

I have never let my E stop me from working. For the past 22 yrs. I've been working in public school as a Teacher Aide in Special Ed. I've had sz. in the classroom and nobody has every given me a hard time about it. Students understand it very well. I wish you the best of luck and May God Bless You!

Sue

It's nice to read comments from other people with it. So far, I'm the only person I know with it, and it can be a bit isolating just because of the effects it has on the personality and mental abilities. The spells aren't isolating for me per se since again, it has been a long time since I've had one -- several years. They are acutely unpleasant for me, and I'm glad to have them gone. However, while they were occurring, not only did I not know what they were, but no one else even knew I was having them. :) The rapid data absorption and emotional intensity isolated me more than the spells would have.

I also have something called Marfan Syndrome (not neuro at all), and the spells went away when I started taking beta blockers for it, oddly enough. I can't see a connection but I know a friend in the UK who has full-on grand mal E and who can't use nicotine patches because she has spells when she does, right through the Depakote.

Because of this, I'm unwilling to medicate myself further for spells that have not occurred for several years. If and when I decide to change that, it will be my decision, period.

I can't honestly say I mind having it since it has given me a number of very precious gifts, but it can be a lot to think about when you start to realize that the thought processes that you have that have been so different from the people around you might be down to something concrete -- and that there might be other people out there who understand. It's very nice to hear from other people with it. I guess I am feeling more alone than I realized. :o

Does anyone else do the language-absorption thing here?

I agree, it does sound as if you're both still having seizures. I wouldn't hesitate to start taking the medication right away and try to put a stop to it as soon as possible. The quicker you get a handle on things the better.
I too have TLE (right side). Mine being caused by a brain tumor that took several years to correctly diagnose - again I was also having a lot of funny
"spells" or "episodes" as I would call them. Lots of deja vu, stomach flips, weird sensations in my eyes and smelling things that no one else could ever smell. And of course the headaches that accompanied them, who can forget that? Here I am 5 1/2 years post op after having the tumor removed and I have started having seizures again (after going 4 years without them).
Like several of you I have some additional characteristics- I have an "eye for color", have a terrible memory (strongly related to my surgery of course), I do have an ear for music however ever since my surgery that is actually where some of my seizures come from, music. Which is too bad, I love music but certain sounds or notes will provoke seizures for me. Then there's math, I have never been good at it, and I'm still not. But I'm rather skilled at writing and language skills.
I had never heard of the left handed being more dominant in e before, I am right handed as is the majority of the population, so I can't help but question the reliablility of that statement. Who knows...

I said in my first post , I am not having spells. I know what they are; I've had them my entire life. I am not having them now. It's been quite literally years.

IF and WHEN I make the decision to medicate myself, I will make the decision, period.

I am trying to connect with people and talk with them and find out about their experiences here

WordsnNumbers, No, don't medicate yourself. People are just telling you about their experiences, such as 'B12 is a big help'. They are just telling you that B12 has helped them and s/he has heard that it has helped others.

I have temporal lobe seizures plus a host of other kinds also. If you don't have spells I see no reason to medicate unless something aggravates your condition. I had so much trouble with meds when the docs were trying to stabilize me I wanted to crawl in a hole and die. Thankfully they discovered my system could only handle very low dosages of pheno and valium 4X daily and at bedtime. Meds can be horrible, especially if you have ms on top of epilepsy.

I remember being rather irked at the neurologist when he was trying to get me to take the Keppra. I can understand his apprehension; he's probably had to call the DMV on a few of his patients and doesn't care to do it. But it was like:

"We'll start you on Keppra."

"But I haven't had a full-on spell in years."

"You'll start with a low dose, and--"

"Doctor, I haven't -- "

"-- move up from there. There's also Lamictal, but that interferes with fertility -- "

"-- had a spell in -- "

"-- so we'll start off with the Keppra."

"-- years."

"What?"

"*sigh*"

He also told me nothing at all about signs to watch for that the stuff wasn't working well for me, until I asked him, "If this stuff makes my head go pear-shaped, what warning signs will I want to watch for?" That earned me a blank look.

And after hearing about the problems that people had had with settling on medications that work for them, I determined that I wasn't going to take a single one unless I had a damned good reason to do so, and given that it's been years since I've had a spell (and decades since what I've come to realize were complex partials), I'm not taking a thing. I'm not the denial type, so if it becomes evident that I need them, I'll take them. But until then?

Nope. Not unless it's needed.

Currently, the thing I'm the most interested in is actually Geschwind's Syndrome because I've been a very intense, hypergraphic person with unusual (and unusually distributed) skills for my entire life, and this is the first time I've ever seen myself described properly in a book of any kind. I'm 42 and I've never seen myself reflected so utterly anywhere before. It's an unusual experience to have for the first time in middle age.

I have some of the same characteristics but so does my nephew who does not have any sort of neuro condition. Also, some of these abilities I have are in my family background, so I feel like due to the fact that there was an area in my brain that suffered damage due to high fever as a child, other areas may have compensated making them possibly more adept at their fuinction. That makes senser to me since the body does that sort of thing and the brain is no exception. That area is the epileptogenic area where the seizures originate in my case. None of that is even important in the grand scheme of things. What is important is to keep myself moving forward with my life as I choose and to make every effort to keep myself from gong backward. Not taking my Keppra is floolish for me to do since these gifts I have may or will eventually disappear if I lose cognitive abilty or memory which will happen if I were to continue to have uncontrolled seizures no matter what type they are. I have simple and complex partials, but since I had surgery, my life is so much better. No complex partials, only an occas to rare aura and I still take Keppra. I have taken meds since I was 14 years old and always will. No biggie! I want to reach my full potential and always enjoy these gifts I was given so I will do my part and take care of myself. Tattoo

Bumped up for newcomers. Tattoo

Yea, me. You sound JUST like me. The hypergraphia thing usually just happens after some sort of trauma, mental or physical.

I chose NOT to be medicated since I found the side effects of the meds were worse than what they were supposed to control.

I have just learned to live with it all. Afterall, I wasn't diagnosed until I was 50 and worked around my problems all my life.

One of the meds, I can't recall the name of, sounds like Neurontin, was the worst. I had 3 friends who all took this med and are now dead. Way before their time IMO.

I don't think doctors really KNOW what they are doing. They throw all these drugs at you in sort of a shotgun approach and IF there is some improvement somewhere, well, you just lucked out, but I really have no confidence in the medical Mills. I'd rather just be drug free and be the way God made me, problems and all. I tried the doctors ways and found it extremely debilitating. I am better off without them.

Hello 'words and numbers' person~ I have TLE also and am of the visual/literary type. My neurologist says both sides are involved with seizure acitivity. I also was diagnosed recently and mis-diagnosed and mis-treated with the wrong meds... for bipolar disorder, which never quite fit.

I'm very interested in meeting others with TLE. My brother also has it but aside from him I only have one friend who can tell me about it second hand. She says her mother had TLE and later in her mother's life she was not able to go anywhere for fear that she would become disoriented and do something crazy like take her clothes off in public, which she did once in church.

I have religious experinces... thought I was a mystic. I also have had out-of-body trips that had me beleiving in the paranormal more than I would ordinarily. I am in my mid 50s. My family is somehwat ashamed of me becasue I quit working as an art therpist and have been on disability for 7 years. Often I am not able to drive and often I don't remember what I say or do for days on end.

It's quite an interesting (for lack of a better word) case of mal-happenstance.

Hi cmariano117,

When you have TLE, complex partial seizures are very common. Complex partials do affect both sides of your brain, the hippocampus (which in charge of storing memories) on each side of the brain fire off speedy activity. That's why when one comes to, after a c.p., they have no memory of the event.

Usually an aura warns people that the c.p. is coming. My aura happens only seconds before, which gives me no time to react or protect myself. Some people have auras hours before! I don't know anyone who does, but all literature talks about the aura usually giving people minutes to hours to prepare for the c.p. How one prepares for a c.p., I have no idea.

I'm curious what medication/s you take to prevent seizures? When were you finally diagnosed? It can take a long time to finally find medication or treatment that adequately controls the epilepsy. I do know a couple of people who've had the vagus nerve stimulator implanted. That helps a bit. Of course, surgery is becoming more popular for TLE - as this type of epilepsy is most difficult to control & they can work around speech and memory areas. In many cases, the hippocampus is largely (and completely) removed, since we have another hippocampus on the other side of our brain.

Shez

LTL resected 3/06

Hi ~ I have TLE with complex partials that started when I was 46 years old.
Well, they started several/many months before that but no one, even a doctor, would believe me.
Nov. 1, 1990, I went to sound to sleep and quickly had a massive tonic clonic ... I was diagnosed with epilepsy.

After that I continued having the CPs - a nice warning aura maybe 30 seconds before probably saved ...... :p long story But I did amost always have a memory of what happened during the event.

I took all the meds and almost all combos of the meds - the CP seizures continued. The only change was I lost my precious aura and went unconcious during the seizures.

July 2005 finally it was learned that a small grade 2 oliogodendroglioma tumor in my left temporal lobe was what had started this for me ... Feb 2006 it was removed.
May 2007 seizures returned so I had more surgery and I have not had another sz since then.

Hi,
I've had TLE for 37 yrs. I started having absence (petit mal) sz. when I was 10 yrs. old and then the complex partial sz. began. I have never been able to drive in my life but I won't let Epilepsy stop me from working full time teaching kids in Special Education who have both physical and learning disabilities. I had 2 brain surgeries to help reduce my sz. and I've found taking vitamin B12 once a day along with my sz. meds has been a big help stopping a lot of the sz. Also right before I have a complex partial sz. I get an aura sz. also known as a simple partial sz. when this happens I get a nervous feeling in my stomach for a few seconds and see colors flashing back and forth in my eyes. The moment this begins I tighten up all the muscles in my body and make my hands into tight fists by doing this it stops the aura sz. from going into a complex partial sz. You might want to give it a try and see if it helps. Here's wishing everyone here well and May God Bless All of You!

Sue

TLE since 2002 or prior
 

I've been diagnosed since my 2002 major episode that probably would be called a complex full out my mind. sorry it is late and I have not read the terms of TLE fully, but after 2002 I jumped on the meds and stabilized and didn't have any issues for awhile. However, the meds prevented me (28 at the time) of going out and having a social life or so I thought. It was hard for me at that age after being social, drinking, and other activities to stop them all together.

After my second full blown hospital trip, I got serious fast. No booz or other "things" and have stayed on the meds. Obviously I miss a few things, but I've learned to love N/A beer made by the dutch!

In short, I think people on this list read your words and feel like they can help. Obviously you are on the other side of the country probably and we can't see you up close to know if you are/are not tricking yourself as I had tricked myself. I totally thought I was in control, even after my first full blown episode that made me think aliens and/or religious blah blah was going to occur. Regardless, I'm living a full life and all it took was saying yes to the meds and no to the other stuff.

TLE is a drag
 

Hello, I sympathize/empathize with everything you say here. But, I must say that the seizures are the least of my worries. I have been an odd ball since I was very young, and lost in my own world of hallucinations, that "Alice in Wonderland" thing they speak of, an excess of creativity. It's no fun. It's gotten worse for me over time and now I do take meds... Lamictal. I haven't been able to work for a few years ... too much stimuli of light/sounds and people-chaos make me seize.

It's more of a lifestyle problem for me. Feeling like a freak of nature, knowing that, as you say, it's only a slight touch away from madness in the psychiatric sense. My world has become closed off, lonely and unproductive. I make prayer beads now. Lots of quiet. Contacts over the internet, walking my dog, not supposed to drive until after 6 months with no seizure which hasn't happened yet.

I need to know I am not alone. It's good to read what other TLE people have to say. Cynthia in Massachusetts

flying bowls
 

BabyJayne... I relate to your symptoms very much. I take meds, but I have tried many that make TLE worse, so it is difficult to trust. Truthfully, I was diagnosed with bipolar d/o w/psychotic features up until a few years ago when I KNEW it was wrong, the meds, the treatment, etc. I went to a neurologist, who is an epileptologist and he's been my safety net.

But, people around me often think I am a hypochondriac, making up bizarre symptoms - because they don't "see" me going through them. It's not easy. My worst outcome is that I no longer can work, which locks me into my head all the more.... isolation, sterile environment, loss of self-esteem related to work and usefulness in society.

Thanks for speaking up. Cynthia in MA

To Shez
 

Hi Shez, only diagnosed here in my 50s. I take Lamictal which doesn't cut down on seizure activity but it does keep the ebb and flow of my emotions more manageable. Without this med I am a basket case of emotions and hallucinations, fears, obsessions with words and numbers, etc.

The worst thing is I had to stop working and that is killing my spirit. The med works so well on those symptoms I mentioned but the down side is that my creativity is squelched. I barely do anything creative and now that I don't work I ahve all the time in the world but no creative drive, kinda numb.

It's a give and take. Cynthia

Hey there
 

Hi there,
I have TLE too. I have it on both ends, so it's basically tossed my memory into the toilet and it's as if my mom or a friend has flushed it. Up until 1998 i was prescribed EVERY med that was out on the market for E. But since that and the right temporal lobectomy, and the VNS didn't stop my seizures. My neuro told me that I have SEVERE epilepsy. They don't know if I was born with it, or if I got it from being in Desert Storm. I'm a Marine war vet. After the right temporal lobectomy, in the early 90's, i got the VNS in 95. For 11 years that didn't do anything for me. Than in 2006 i entered the RNS medical research study. that's helping me moderately well. I'm dying to get the seizures under controll because of the job offer that I got a couple years ago. Here in southern CA. NASA offered me a job to be a security guard at their offices at JPL (Jet Propultion Laboratory). The starting pay is $45,000 per year. But i must have a drivers license. If you ever want to talk about the seizures, the VNS, or the RNS, let me know. We can either do it on the live epilepsy chat at www.epilepsy.com or i can call youif you live any where in the USA, since I have unlimited nation wide calling with AT&T.
Sincerely
shawn33

TLE reply.
 

I understand now at the age of 26 how difficult the diagnosis of TLE can be. I'm only now starting to accept the new diagnosis. In the pasts I had been labeled and unsuccessfully treated with SSRI's and other drugs, which didn't help me. I first heard of TLE in the summer of 2007, I thought everybody had little de'ja vu episodes. Mine happen specifically at night although the confusion, memory, mood and perception problems remain throughout the day. My biggest question right now and biggest concern is does any body else experience "Forced Thinking"? I have behaviors and thoughts which seem to be intrusive and create a membrane of wire around my mind. The rigid thoughts are close to OCD, I feel compelled by an outside forced to complete behaviors as if I'm thinking and acting around the most logical and easiest way. The feeling is as if there is a headache on the left side of my head and both emotions and thoughts are frozen or flow very awkwardly. If anybody understands even a bit of this please reply. Thanks.

Yes,only I sing my obsession in my head.its like it spends s much time in my head that it actually changes,and it is usually something ffrom the past or horrific news about children or the last word somebody says to me.I just know if i share too muchwith those around me i and Mmy kids will be hauled away.

Tle
 

I was diagnosed with TLE this past September, two psychiatrists have come up with the same dx so I think I'm coming to accept it, but at the same time I'm quite sure I need treatment (therapist and anti seizure meds) because my thinking is really compromised at the moment. TLE manifests itself with mood and cognitive disorders.
The symptoms that you've described that seem striking to me is the fact that you are left-handed and have a knack for numbers. I have an intense visual memory that can play in my head when I'm feeling strange, in fact my visual memory is so strong my family and friends depend on me to ask when photos were taken. In most cases I can pinpoint the year, month or even week. Its kind of a parlor trick, but as an artist I find it useful. I'm assuming that the focus of your epilepsy must somehow extend to the auditory area. Does the music ever become unpleasant as if somebody has a radio on while you're trying to do something important? Do you have a history of depression/anxiety or memory problems ? As these might be a symptom of your epilepsy. For myself my mood is intensely affected by the aura seizures, intense euphoria usually accompanies the event and then grumpy depression follows. I know I've wrote about myself, but I'd like to compare notes and see what symptoms we have in common.

Music,words that people say and things Ive read just become stuck in my mind and twist and turn and change themselves into new and bizarre phrase that are unrecognizable and usually more intense than their original counterpart. Of course,I then have this compulsion to sing these words out loud and LOUDLY in an attempt to exorcise them out of my brain which does work.I also have an extreme attachment to Christmas.My living room is decorated with Christmas decor,Every year I only halfway put away decorations,leaving most of it out all year and purchasing more.I listen to Christmas music most of the year and have miniature trees and lighting up all year.With all my weird psychotic actions I fear that once my children are gone and I hit 70 or so i will be known as that weird Christmas lady at the end of the road.

Bumping up for a newcomer.

the TLE
 

Hi there, I have the TLE too. I have it from a traumatic blow to the head. It's scarring on the lobes.My doc's can't trace back how it started, so I was diagnosed idiopathic. My sense for scent, and sound has increased a good amount. But because of my meds my balance is screwed up a little. What greatly reduced the amount of seizures is the right temporal lobectomy. But I still have them because I have scarring on the left temporal lobe too. after the staring spell, I go into total confusion, and half the time during the confusion I'll hallucinate. I asked my doctor why is that, and he said. "that because if the length of time for the electrical activity takes longer than normal to get back to normal. It can cause bad confusion that leads into hallucination. So don't worry you're not a mental case." If a employer refuses to accept you because of seizures, or lays you off because of them. You can take them to court with the Americans with Disabilities Act (ADA). The National Epilepsy Foundation will help you with ALL the legal issues. So where are you at? I'm in Pasadena, California. If you ever need a person to talk to on the phone that has TLE, just let me know, I'll give you a call and some support.

You're right people are sensative to the word Epilepsy. I've been trying to find a girlfriend for the past 18 years. But when I bring up the seizures, I just get rejected immediately. So I'm 40, and have yet to have a wife and child. My seizures started up with deja vu the simple partial, and then went to petit mal. Now I have complex partial, and starting in 2006 grand mal.
Sincerely
Shawn

I was diagnosed with grand mal epilepsy back when I was 18 years old in the Army stationed at Schofeild Barracks HI. I am now 51 years old. I remember the first seizure I ever had, I was with a buddy down in Honolulu and we were about to get on a city bus and go back to Schofeild. I stepped up in the bus and fell back out on the sidewalk. Next thing I knew, I was awakened by a doctor at Tripler Army Hospital and had no idea as to how or why I was there. This was in the late seventies so army hospitals were not that well equipped. The army doctors did not have a clue what had happened to me. I guess just in order to get me out of their hair; they decided it was drug related. I had never touched any kind of drugs, legal or not, I didn't even like to take aspirin. No drugs were found in the blood test they did either. Anyway, my company commander decided that I needed to volunteer for drug rehab. My therapist at rehab sent several messages to my captain telling him that this was wasting their time. I passed every drug test the army could muster. Well, in the mean time; the seizures continued at least twice a month and sometimes more. They even sent me to a psychiatrist. They finally sent me to a neurologist at Tripler. He did several tests and decided that I had Grand Mal Epilepsy from a temporal lobal sclerosis. He said this was probably caused by a head injury I got when I fell and destroyed my knee. I have taken every kind of seizure prevention medicine you could think of, so many I can’t remember the names of them. Finally the doctors at the VA in Birmingham Al decided to try Depakote at 3500 mg a day (7 pills). This got the seizures down to one every 3 or 4 months. I even went 8 months one time without one. Last year in August, I had to have a total knee replacement in my left knee. The surgeons had to stop the operation and wait for a pint of blood platelets to be pumped into me. They said the count was below 50,000 whatever that means. After the surgery, they had to give me more. They all put their heads together along with my neurologist and decided the Depakote was causing this loss of platelets. My neurologist decided then to take me off the Depakote and put me on Levetiracetam, 1500 mg a day. Guess what, they are back. I have averaged 1 to 2 seizures a month sense the change in meds. I do know this, it’s very, very true that seizures get worse with age. Now it takes me a week to 10 days to get over one. I have read that the Depakote is physically worse on the body than Levetiracetam, but the Levetiracetam has some pretty nasty side effects also. I get fighting mad about the least little thing that used to didn’t bother me at all. My wife says that if this medicine is causing this, it has got to go or she will go. She did say it was my choice. Anyway, I have an appointment with my doctor in a week.
My Lord, I didn’t realize this post had gotten so long. Sorry!

Wwelcome
 

Thanks Darlene,
I do take B12, My wife will beat me if I miss a dose. I have noticed that if I am in a room with florescent lights, I get that aura. I have to wear dark sunglasses in order to go to the VA hospital, folks probably think I'm just trying to be cool (I wish). I had to have cateract surgery done on both eyes back in 2009 and when they do that dialation, it gives me a fit. I have know idea what meds they will try next. I just know for sure the Levetiracetam ain't gona work.

Thanks for the welcome, I'll be around.

rlj1959

Hi rlj1959,

I can understand what you are going through I took Depakote for many yrs. for my absence (petit mal) and complex partial seizures and it worked great but just like you I had to go off of the drug because it lowered my blood platlet level to the point that I was almost bleeding internally. Since then I haven't found a single drug to help stop my seizures. I tried the lamictal and I broke out with a rash from the drug after taking it for only 4 days. I also took tegretol and trileptal and the same thing happened. You might want to try taking mysoline which breaks down into phenobarbital it works well for many people who have grand mal seizures. Also cut back on the carbs. and starch foods because it has been proven that to much of this kind of food will cause seizures.
In regards to the light you may be photosenstive which means that certain colors can trigger seizures for you. I had a special e.e.g. done where they would flash different color strobe lights one at a time and they found that florescent green, amber, and bright white like the sun shining on the snow will trigger seizures for me. You might want to ask your Dr. to order this special e.e.g. to be done. You can also request a DNA test be done on you and by doing this the Dr. can find out what seizure med will help you the most with the least side effects. Take my word the Drs. don't like to do this because they are losing money from the pharmacies but you have every legal right to have this test done.
Thank you for serving our country! I'm very proud of you and I sure wish I could have gone into the military but it was my epilepsy that stopped me. I have a lot of family that made a career of the service. One cousin served 41 yrs. Here's wishing you and your family only the best and May God Bless All of You!

Sue

Thanks Sue,
Maybe they can find something that will work without all these blessed side effects. Probably not but maybe.

My husband had a Cavernous Angioma removed from his right temporal lobe. The surgery was successful in removing the angioma, but he gets 3-4 Temp lobe seizures a week ir not more, he is wiped out and sick to his stomach for days!

I tried to get him on disability, but since he's 41 they are giving him issues. But its sad, he is loaded on medications, sleeps alot! They dont want him driving, he is also depressed on 150mg of Zoloft.

Any advice? We tried the diets mentioned. He has had seen many different docs, they changed up his meds many times, still sick with these seizres.

Is anybody here on SSDI because of these type Temp Lobe seizures?

Thanks!

I filed for my disability back several years ago for the seizures and they turned me down. They said they didn't think it was permanent and it wouldn't keep me from working. I have worked but I still have the seizures. Take a look at the SSA Blue Book and it will describe the rules governing disability with seizures. Maybe this can guide you in the right direction. Good Luck!

Hi Rickey,

I'm working in a new medical study where they use different color lights such as sky blue to help calms the nerves along with different scents such as vanilla and lavender to calm the nervous system. I also have tried listening to music every day before work and by doing all of these things I have noticed a decrease in my sz. You might want to give it a try if you want to. Thanks for sharing the SSA Blue Book I greatly appreciate all of your help and support. Here's wishing you well and May God Bless You!

Sue

Hi Sue,
I try to listen to classical music as often as I can, especially before going to bed. This seems to help. The keppra is causing some serious side effects such a rash on my leg that won't go away, it's causing me to get mad as a wet setting hen over the least little thing. I am going back to the neuro doctor next week to see what he wants to try next. He has got to do something, about one more screaming match with my wife over nothing will cause me to be a bachelor.

Thanks, Rickey

a believer
 

I can see you now. I have had many experiences I could share with you. I started having quite serious visions in December 1999 which finished on mid-winter solstace 2010, the morning of the red moon, when I found myself looking upon the face of God, in the presence of the Christ, in a realm of omniscience laying out the waters(pure spirit) on which worlds are built. is the the sort of thing you were hoping to find? Alan D Kennedy, the third of three brothers.

light for the mind
 

I can see you now. I have been having large numbers of spiritual experiences since December 1999 which came to a head on mid-winter solstace 2010 on the morning of the red moon when I found myself in a realm of omniscience where I looked upon the face of the father in the prescence of the Christ Jesus. When in this state of consciousness Ihad my first experience of laying out the waters(pure spirit) on which worlds are created. Is this the sort of answers you were looking for. If so you should get in touch. My name is Alan Donald Kennedy of the clan Kennedy, third son of James P Kennedy. If you are familiar with your Nostradamus prophecies you'll know what I'm trying to tell you. May peace be with you