Think I may have temporal lobe epilepsy ... very nervous

[WordsnNumbers]

Hi -- I really could use a little advice, and I'm sorry to just barge in here and start asking questions, but I'm about 99% sure that I have temporal lobe epilepsy, and I'm really, really torn about it.

The first spells started when I was 7 or so, and I told ABSOLUTELY NO ONE about it, not even my parents. I also have some other health issues (Marfan Syndrome) that I thought explained these spells, but the more I learn about temporal lobe epilepsy, the more I strongly suspect that I also have that.

The run-down of symptoms is:

1) Left-handedness, only one in my family.
2) Synaesthesia.
3) The ability to pick up languages extremely quickly. I'm currently proficient in English, French, and Welsh and have become proficient in Welsh after a year and a half of self-study. I was functionally literate inside of three months. I entered an extremely intensive, residential Welsh language course this summer at the highest level and won their Eisteddfod competition at that level. No one could quite believe that I'd only studied it for as long as I did. I have the miniature chair on a bookshelf. :-)
4) The ability to pick up mathematics almost effortlessly. (Except for statistics and thermodynamics, which smell, taste, and feel like almost nothing. Studying them is like eating cinderblock powder.)
5) Strong affinity with metaphor.
6) Hypergraphia. EXTREMELY GOOD visual data modeling abilities.
7) Strong artistic bent, but also a very strong scientific bent. Master's degree in high-energy physics.
8) Very high idealism or religiosity.
9) Spells that have dogged me since I was 7 where I feel as if I'm standing behind my eyes somehow, where everything becomes hyper-sharp and clear and then seems to be fading around me -- not becoming transparent, but just ... fading from reality somehow. These things are almost impossible to describe. Then, I feel vertigo and cold, and it seems as if I've been dreaming about things that are strongly suggested or coming into reality around me. I also feel as if the surroundings are triggering these feelings, and if I could just get up and run away, it would stop. Of course, it never solves the problem, and I've lost consciousness a few times from this and gone down hard, finding bruises on myself when I get ready for bed that night.

I have been EXTREMELY LUCKY in that these spells either happen when I'm alone or when I've been able to just force myself to sit tight, grip the armrests, and wait it out. They usually last about a minute or two, I think -- it's hard to judge. They also come in clusters -- and I actually haven't had any since I was diagnosed with Marfan Syndrome and started taking beta blockers for that. I do sometimes feel as if something IS happening in my head still from time to time, in clusters, but it never goes into a full-fledged spell. BTW, I'm 40.

I have said nothing whatsoever to anyone about the ... perceptual things that happen when I get these, and a lot of people (including me) just assumed they were because of the heart issues with the Marfan. (I thought they were atrial fibbing.) As a child, I said NOTHING AT ALL about these because even at the age of 7, I knew that telling people that my dreams were coming to life around me and, even if our dining room wasn't in a submarine with people clustered around the table talking a foreign language while everything sparkled and there should have been a train station in our basement, they wouldn't much react well if I told them that it still felt that way for a few minutes yesterday. I'm not crazy, I'm not out of my mind, I'm not gullible enough to imagine any of these things are true, and I've been quite self-sufficient, successful, and together, so I'm not crazy, and I don't want to claim the label especially of an epilepsy that causes perceptual distortion, because I know damned well that it's not that way, even if my brain flames out every now and then and tries to act that way. People FREAK OUT over that word, and I will NOT upend my life with it.

So I never knew what it was because I never asked. I've always had a rough time dealing with people anyhow; I never understood why explaining something at someone at 90 mph never resulted in THEM understanding why Welsh and Arabic genitive constructions were related, and I think I always had a hard time not looking at them like, "What's YOUR problem?" I also think I've had a hard time dealing with other people looking at me like there's something wrong with me because I DO like to carry on enormous, extremely intense conversations with people about the epidemiology of the Black Death, Eleanor Roosevelt, and the history of human writing since 8000BC. Over time, I've found a circle of other people (many of whom self-identify as high-functioning autistic) who DO like talking like that, and we get along really well.

I should also say that I am an extreme extrovert in many ways and find a tremendous amount of energy and stimulation with other people, so I'm not the sort of person who dislikes human contact. I almost crave it.

I have heard of temporal lobe epilepsy before, but never asumed it had anything to do with me because it's always presented in this highly sensationalized way, like I'm supposed to run out of the house with no clothes on and claim to have seen God or something. (I'm atheist, so I'm hardly in that camp.) It wasn't until another person with temporal lobe epilepsy saw my Marfan page where I described one of the spells and said, "That sounds an awful lot like temporal lobe epilepsy," and then proceeded to freak me out by saying, "Are you lefthanded, multilingual, highly emotionally labile, good with mathematics and metaphor, and synaesthetic, by any chance?"

I looked up not descriptions by sensationalist newspaper reporters about temporal lobe epilepsy, but descriptions of the spells by actual people who had it. That's when I realized that I've been having these things since I was 7, and that a lot of the other qualities that TLEs share are ones that I have. I think I just sat down and shook in my office at work when I read the description in the first paragraph here:

http://www.epilepsy.com/epilepsy/epi...porallobe.html

Again, I hasten to add that I have not had a full-on spell since I started taking beta blockers to control my Marfan, and that was about seven years ago.

I am so torn right now. I want to claim the label or at least be evaluated because I want to find other people with this, because I feel like having a Ferrari between my ears has made it difficult for me to deal with other people a lot. I'm unmarried and utterly unwilling or unable to have a relationship because of the Ferrari, and I know that. But I can't tell you how good it felt to read descriptions of other people with this and feel like I've found my tribe, like there's a reason why all these things happen inside my head, why I can learn a language enough to read and write in it in about three months, for example. Why my brain flames out every now and them. Why I can't watch movies because the stimulation is so intense that I can't sleep for three days afterwards. People to whom I can say, "My dreams feel like they're coming to life around me and then I pass out," and who will KNOW WHAT I MEAN and won't think I'm crazy.

But ... I drive. I have NEVER had trouble driving, and I work 35 miles away from where I live. I am not a damned menace on the freeway! It's been seven years for pete's sake, and I've only ever had one spell behind the wheel of a car, and that was when I was working rotating shift work rotating every two weeks in the wrong direction for two and a half years and having a lot of them anyway! I will NOT be diagnosed with this formally if it means crippling my life. Period. I've gone for 40 years with this with no formal diagnosis, I can go another 40.

But I still wanted to talk to other people who have this, and who think that oboes taste like cinnamon and French tastes like soft, multicolored candies the size of your thumb, and Fermi-Dirac statistics has the same texture as highly polished aluminum. I mean, okay -- the Ferrari between my ears flames out on me on occasion. But compared to a pickup truck, I'll take it. I'll take it any day of the week.

Anyone else out there with temporal lobe epilepsy who can reassure me that it won't completely ruin my life if I ask my doctor if I can be evaluated?

[Bernard]

Hi WNN, welcome to the forum.

I have been EXTREMELY LUCKY in that these spells either happen when I'm alone or when I've been able to just force myself to sit tight, grip the armrests, and wait it out.

What would the problem be if you had a spell when people were present? If you do have temporal lobe epilepsy and your seizures generalize, it would be GOOD for other people to be present to ensure your safety when you go unconscious (assuming they are educated in what to do). One thing about Epilepsy that I'm 100% convinced of is that you are much better off accepting it and dealing with it than trying to hide it. One day, it could be the difference between life and death.

I never understood why explaining something at someone at 90 mph ...

When my wife was experiencing absense seizures, they were almost always brought on by periods of excitability - ie. when she would be telling a story, she would start getting excited and talking faster and faster and then overload... like a circuit breaker imposing a speed limit on the thought process. This stopped completely after she finished training with EEG neurofeedback.

As far as opinions on whether or not to seek a diagnosis, a confirmation of temporal lobe epilepsy should not change anything. There are lots of people with confirmed epilepsy who live perfectly normal lives with good seizure control. What's really at the crux of the matter is whether you are having uncontrolled seizures (whether temporal lobe epilepsy or some other form of Epilepsy). Uncontrolled seizures is what leads to hardships in life, not the diagnosis/label IMO.

[WordsnNumbers]

Hi WNN, welcome to the forum. :hello:

What would the problem be if you had a spell when people were present?

Just that I would probably be expected to explain to them what happened, and would have to deal with the inevitable "SO YOUR BRAIN IS BROKEN, THEN?" sorts of questions or people telling me that their sister has schizophrenia and it's like totally the exact same thing, and just general annoyance factors like that.

Worst of all would be coworkers. I am VERY private at work and do not care to have coworkers aware of the fact that my brain flames out from time to time. It is literally NO concern or problem for them, but like I said, people hear the e-word and freak out.

I like the company I work for, and they already know I have Marfan, but it's not unheard of for companies to fire people who they fear might cost them in insurance coverage or just because they don't know the truth about what they have. I already spend a lot of online time educating people and doing outreach for Marfan.

It'd be like having two jobs. I'd need to do my job at work promoting the company, and then it'd be like signing up for a whole other shift doing temporal lobe epilepsy Educational Outreach. The first job's already too much for one person.

When my wife was experiencing absense seizures, they were almost always brought on by periods of excitability - ie. when she would be telling a story, she would start getting excited and talking faster and faster and then overload... like a circuit breaker imposing a speed limit on the thought process. This stopped completely after she finished training with EEG neurofeedback.

They always came on me with very little warning, no matter where I was or what I was doing. Although, I must admit that I never realized what they were and so wasn't looking for patterns.

As far as opinions on whether or not to seek a diagnosis, a confirmation of TLE should not change anything. There are lots of people with confirmed epilepsy who live perfectly normal lives with good seizure control. What's really at the crux of the matter is whether you are having uncontrolled seizures (whether TLE or some other form of Epilepsy). Uncontrolled seizures is what leads to hardships in life, not the diagnosis/label IMO.

I just want to make sure that I can still keep my driver's license and firearms certificate. I really don't need medication, and I'm not crazy about the idea of taking medicine that will affect my daily perception. The woman who wrote to me said that when she took it, life got very grey and uninteresting. I won't take medicine that makes me unable to learn a language in three months. It's too much fun to risk losing that.

Thanks for the reply, too. I'm still really freaked by this. I've written to a really, really good friend of mine who has grand mal seizures to just sort of vent at her. Hopefully, she'll have some advice, but I don't know if it'll be that useful to me. She's not in the US, and she's also got the full-on bells-and-whistles grand mal stuff with all the pricey options. :-)

[abbylouise]

hi there, im 20 years old and ive got temporal lobe epilepsy. i started getting "fits" when i was about 8, i remember my 1st one very clearly and they havent changed since.

i have this overwhelming feeling of deja vu, like i lived this exact moment thousands of times before. then comes the fear, i feel like somethings behind me and i have to back up into a wall. regular noises seem very loud and scare me so i put my fingers in my ears. i then get this "siren" type noise in my head which is very fast then gradually slows down as the seizure begins to stop. Afterwards i feel absolutley exhausted and usually sleep, and i feel really nauseous aswel, although i have never been sick.

my epilepsy was passed off as "anxiety attacks" for about 6 years and no one, not even my mum belived me when i tried to explain what was happening to me. when i was about 14/15 my mum took me to the doctors who referred me to a specialist, i was given 2 EEG tests and 1 MRI scan. The results came back which said i had temporal lobe epilepsy.

i put up with it after that but when i was about 17 i thought about driving and decided to go on medication and im now on lamotrigine once a day and have been fit-free for almost a year.

your symptoms don't really sound mine, but i wouldn't say temporal lobe epilepsy will ruin your life if u do have it!!
but there is medication you can take if you do have it

hope this helps
Abby xx