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

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

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

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?

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.