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phyloguy

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Hey everyone,

I've also been reading these forums for the last couple months, but finally decided to join. I suffer from right temporal lobe epilepsy, diagnosed by EEG and indicated by the types of auras and simple partial seizures I experience.

I've had two tonic clonic seizures that I know of. The first occurred in 2001, when I was 24 and led to my initial diagnosis. The second occurred when I made the rash decision to discontinue my AED (phenytoin) on my own in 2002. Since returning to phenytoin I've had no generalized seizures, but as of 2009 have been experiencing simple partials that I'm working with an epileptologist to treat with further drugs. These occur as often as twice a month, but sometimes with intervals of several (up to 9) months between them.

The reason I joined this forum : in the last year I've suffered from obsessive thoughts of being alone during a tonic clonic seizure, of being in an auto accident, of accidentally harming my family, or even of my own mortality. I typically only suffer from very brief bouts of situational anxiety, so the sudden onset of chronic anxiety problems has almost been as much of a shock as my original diagnosis of epilepsy. I'm taking anti-depressants, and trying to work through these issues with a psychologist. Life is almost back to normal, but the process has led me to realize that there are few places I can go for support. There are very few that I'm comfortable talking about my epilepsy with, and those that I can, while always supportive can't directly relate.

More not so relevant details about me:

I'm an ex-pat Canadian that has spent far too long in school, and is currently working as a post-doctoral researcher in the biological sciences (not in epilepsy research!) at a large university. I've lived and worked overseas (in the UK) for half a decade and am currently settled into a mid-sized US city with a small, but expanding family. My main passions are science, history and Xbox (in no particular order).
 
Nice to meet you phyloguy, glad you decided to take the plunge!

I hear what you're saying about limited support groups. Hopefully over the past few months you'll have seen how this site is many people's main/only way to talk about our conditions with others that really understand..

Welcome :)
 
Welcome Phylo,

"The reason I joined this forum : in the last year I've suffered from obsessive thoughts of being alone during a tonic clonic seizure, of being in an auto accident, of accidentally harming my family, or even of my own mortality."

What's all this with the negative emotions? Get them out of your mind and think of positive emotions. About the love you have with your family, the best support you can have. I'm sure there are a lot of positive things you can think of.

Should i worry about lightning striking me? I mean that would be a horrible thing to happen. I can dwell on that and not go out of my house, but that would be ridiculous since the chances of that happening are slim to none. So why should i worry about it. I don't and if that thought comes across my mind i remove it as being silly.

A good saying to remember to not worry, is "when we cross that bridge, we will deal with it then, until then i won't worry about it". My Ex-boss said that and it stuck in my mind, since it so true. Once we get to that point and the bridge is out, we will think of a way to cross it when we get to that point.

:piano: :pop:
 
Hello phyloguy and welcome,
I suffer from Temporal-lobe epilepsy which covers both sides of the head and the front and partial seizures besides Tonic clonic are involved.
I've had thoughts the same as yourself..I've harmed myself besides my family and the list can go on then manic depression got involved besides which changes the minds thought processing ontop and handling the two doesn't help.

I'm under psychiatric care registered as emergency now but I don't suggest that root myself... to much involvement with different departments as you most likely know, as been down the road for councilling for 3yrs another thing which didn't help.

I can only really suggest is staying positive getting in the proper meds to help you and don't let that process of thoughts take over...as I know how you feel :)

Terry
 
Wish I had an explanation for how I became overcome with obsessive and negative thoughts this last while. I don't feel like it's in my temperament, and these haven't bothered me much over the past dozen-plus years since my diagnosis. At present I still have the same concerns but I can see them more as abstractions (as in the lightning example Zolt mentioned) than immediate threats. Thanks for reminding me that no one can predict the future Zolt, it's one of those things that's everyone knows, but is good to see in writing every so often.
 
Welcome phyloguy,
I see you are having a tough time coming to terms with our condition. I can't tell you how to deal with it, I can just let you know how I do. I make jokes. Not to brag but I am quick witted and my humor is very wry. When I meet someone that must know what my condition is, my old standby is to tell them to leave me alone if they see me flopping on the floor like a dead fish or if they just see me staring, no I am not checking out the blonde who just walked by.

In all probability I will be having surgery on my brain. I just say that they are going to cut me open and find nothing in there. A few really dumb jokes, I know, but I have learned if you can't laugh at yourself, you can't laugh. Welcome again.
 
Hi there, phyloguy. Sorry to hear you are having those thoughts. I think that working with a good counselor can be a very helpful way of dealing with such thoughts and obsessions. There are times when people can't just "decide" not to be obsessed, or depressed or whatever, but there are also many times when one can't choose to just "snap out of it" any more than you could choose not to have seizures. It sounds like that's where you are, so outside talk therapy is probably a good thing. I have been a counselor for many years (I'm not as active in that any more, but I still have a couple of clients) so I know it can be helpful to people. It can also be hard to find the right person who can deal with what you're going through.
Another good thing you can do is to learn as much as you can about epilepsy and that can help take some of the fear away. In my case I was diagnosed in 1982 and since then have had 5 tonic-clonic seizures and many thousands of complex partials. Until I got things controlled (no seizures for 3 months now!!) I was having several hundred a year, so I got lots of practice dealing with them and going on with life in spite of them.
Keep on keepin' on!

Onward!

PS I like your board name. Are you a biologist of some sort?
 
Great advice about the sense of humor Navy Veteran - mine usually kicks in at the worst of times as well, must be a survival mechanism. Maybe you can look at the brain surgery from a different angle - you could argue you're part of a select population of people with direct evidence that there is something up there. I guess most of us could. Your expression 'coming to terms' with made me think. I've had very well controlled epilepsy for many years, it could be something I've never really had to think about until recently.

Positive thinking is an ideal I think we all wish could live up to arnie, but you are exactly correct in saying that there are times when this doesn't work. The drug industry would be much poorer if psychotherapy was enough to cure everyone with depression. Last thing I wanted was (another) chemical solution, but I do feel that after about two months on Zoloft the anxiety feedback loop was broken. Or I naturally cycled out of it - guess I'll find out when I attempt to wean off (assuming I can tell the difference between withdrawal symptoms and an existing anxiety problem).

I hate to place it all at the feet of my physiology, but there are also plenty of papers suggesting that TLE (or many other types of epilepsy) can be associated with depression and/or anxiety. Sort of makes sense as the emotion centers of the brain can often be involved. As most of these say though, the difference between anxiety and depression directly caused by abnormal brain activity and as a result of health concern are hard to dissect out. Still there seems to be something real there and makes for some interesting reading.

Agree about finding the right therapist, the first one I saw knew appallingly little about epilepsy. I'm always surprised - this isn't all that rare a condition after all. My current one is a bit better but still not a great fit. Sounds like the world needs more people like you with first-hand experience.

Thanks for the compliment on the name, glad it wasn't taken ;-). As you guessed from my name, I'm an evolutionary biologist that dabbles in whole genome sequencing of - well, just about anything.
 
Positive thinking is an ideal I think we all wish could live up to arnie, but you are exactly correct in saying that there are times when this doesn't work.

It certainly doesn't work all the time. Nor do anti-depressants or just plain ole counselors. After I had my temporal lobectomy, I went into a deep, deep depression for years and the dr. sent me to a neuropsychiatrist and a neuropsychologist.

I hate to place it all at the feet of my physiology, but there are also plenty of papers suggesting that TLE (or many other types of epilepsy) can be associated with depression and/or anxiety. Sort of makes sense as the emotion centers of the brain can often be involved. As most of these say though, the difference between anxiety and depression directly caused by abnormal brain activity and as a result of health concern are hard to dissect out. Still there seems to be something real there and makes for some interesting reading.

Agree about finding the right therapist

The neuropsychiatrist I was seeing was one who specialized in treating TLE and depression/anxiety/suicide. I don't know if I would have made it thru that very difficult time had I not been treated by him. He used to be on the board of the National Epilepsy Foundation.

Here is some interesting reading:
http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced
 
Welcome phyloguy!

I can definitely relate to what you're talking about. I've been lucky to be very well controlled with meds, usually going years between seizures. But anxiety and depression have plagued me st times. Very often our meds can be the culprit and these side effects are very common and shouldn't be dismissed. We all tolerate our meds differently and as you've surely seen by now, this site has lots of great people willing to share their stories of coping and living with our illness.

Welcome to the party!
 
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