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?

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!
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.

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.