One off event, really?

[Fritz2]

Hi everyone,

I haven't been diagnosed with E yet as my history is so far just an isolated generalised TC when I was in high school just over 13 years ago. I'm 31 now. I was on medication for the first few years as I was freaking about having another but came off it when I was about 20, so been off about 11 years.

My tc was unprovoked I think as the doc found no reason for it and my eeg and tests were normal. He put it down to a one off. So far he's right!

My anxiety about having recurrent seizures was strong for a few years but has slowly got better but I still wonder if it will happen again and become E.

I have read lots on the web saying that up to 10% of people have a one off, but most of those seem to have identifiable reasons such as illness or a bang on the head or drug reaction etc. It seems far less people will have a one off that is unprovoked.

I just wondered if it was really a likelyhood that an unprovoked seizure can also be a genuine one off and not a sign of at least a mild epilepsy. I read some accounts on the internet of people who went 10 years + before having their second so I worry a single unprovoked one is more indicative of at least a mild predisposition to attacks rather than a random one off and although it has been a while since my event, I can never fully relax!

I know many here have much more to cope with than I do but am sure many can relate to the anxiety side of things so wanted to ask what people thought - whether I can see myself as someone with a risk of E or not. My neuro said a few years ago that he didn't think I had E and my risk of further seizures was now down to pretty much the risk of the gen population, but am not sure how that can be in someone who has clearly shown they can have an unprovoked attack.
thx!

Ben

 

[Silat]

I assume your seizure was when you were 18/19 years old, and since your name is "Ben" I'll assume you're male.

Men have a growth spurt between the ages of 17 and 19 which lasts until they're 25. Women are fully developed by 18, but men mature until they're 24/25 years of age. It's possible that, at the beginning of that growth spurt, the changes provoked a seizure. It's not that uncommon, and for men that's when most of the "one-off" seizures occur.

My first happened when I was 17, and my neuro hoped at the time that it was just the growth spurt.... but it ended up not being the cause and I still have seizures 6 years later.

The likelyhood of having another seizure after 13 years, like your neuro said, is pretty slim. I don't think it's anything you should worry about, nor should you let it hold you back from living your life.

 

[MuayThaiFighter]

Studies also determined, (somewhat theory) that the brain goes through a pretty intense hormone change. Possibly a structural change, no one has fully understood the change. They do know the brain typically stops the radical changes at the age of 25. Maybe that has something to do with it, like Silat stated. I wouldn't worry to much, I would just avoid stress and anything that might trigger a seizure for awhile. I know the anxiety of dreading having a relapse. No fun at all.

 

[Bathtub]

My take on it is it's the science of "almost-random" rare events - stuff like tsunamis, lightning strikes, grandmal seizures, cancers... not absolutely random, as some of the mechanisms can be understood and there are factors that seem to make them more likely - earthquakes nearby, standing under a tree, smoking or working with carcinogens and radioactives might be considered such factors for the above events, and for epilepsy all the hormonal stuff that Silat wrote about, as well as other common triggers like being overtired, stressed and food sensitivities etc makes it more likely that anyone will have a seizure. But just as some people can smoke like a chimney and live to a ripe old age, or work with evil chemicals and not get skin or lung damage, and most earthquakes don't cause massive flooding, and most lightning goes safely from one thunderhead-cloud to another and doesn't come near the earth at all... same way, most of the time our active brains keep it going all nicely coordinated and looking good on the surface, then just once in a long while a peak of unusual activity comes over the threshold and boom! body reacts... Thresholds can be lowered by trigger factors so that that "once in a long while" becomes more often. And we can do risk reduction/damage limitation like having lightning conductors on the tallest buildings, not building major cities along fault lines (uh, we're not very good at that one!), screening to detect cancers early while they are still treatable, and in the case of epileptics, not piloting commercial airlines. So you can't absolutely prevent the bad thing from starting, but you can control the consequences.

What you've called a mild epilepsy or predisposition, could be looked at as a very slightly raised possibility of another seizure or a very slightly lower threshold than would be ideal. Most likely you will never have another one, but I'd say it's still worth avoiding the obvious common triggers without ruining your life. 31 is no age to be scared of what may never happen in any case, get life insurance for your dependants and then go out and live!!

It's not dissimilar to the worries of a successfully treated cancer coming back, most recurrences are in the first two years and after a long time the odds are it never will and your risk is back to that of the general population, almost... except you still have the worry... another way to see it is, you survived it once you can do it again, what's the worst that could happen if it did come back. You had a seizure, you did medication, your tests were normal, your doctor was happy. We all have some risk of E, yours is probably no higher than mine (it's my daughter who has had the seizures, not me, about the age you were). Now I think you just got the anxiety to deal with?

Anxiety loves a focus, my old gran was never happy until she had something to worry about. Nebulous feelings of worried - Free-floating anxiety - is much harder to pin down, cos there's nothing you can do to reduce the fear if you don't know the nature of the impending disaster. With the risk of seizures to focus on, there are things you can do, mostly just healthy lifestyle really. Be healthy and enjoy!

 

[Fritz2]

Hi everyone

Thank you all for your replies.

I guess the general feeling is that a single unprovoked seizure years ago can indicate you may perhaps have a mild epilepsy, rather than can be just a freak occurence in an otherwise normal person. Even if the risk of another is low, it will always be raised. Millions of people in the world are stressed or suffer lack of sleep and they don't have seizures as a result so I guess the advice is my history does suggest I have at least a mild seizure disposition so would be more susceptible than normal.

I have over the years been in situations of high stress and sleep deprivation many times, usually at the same time (e.g during uni exams I had 4 days straight of no sleep at all while also doing an exam every day), and nothing has yet happened. Does this mean my triggers are unlikely to be stress or lack of sleep?

I can appreciate the advice to avoid triggers, but in reality it is usually impossible to avoid stress and lack of sleep. My job is often quite stressful for a start and every time I am stressed or have a bad night's sleep, I then stress it will trigger a seizure!

I know there are no guarantees in life and no one can say, 'I promise you Ben you will never have another', but was hoping that by going so long without a recurrence after a single attack that it was more likely than not that my threshold is otherwise normal and was perhaps temporarily lowered back when I was 17 for some unknown reason. I had been on antibiotics for 6 months for acne back then but otherwise though there was no obvious reason for the seizure other than maybe hormones.

With my history and knowing that I am at higher risk of another than normal does worry me and affect my life but I will take on board all your kind advice and try and work on that. My fears are probably the same as many - obviously the seizure itself is not nice but the main worries are the consequences of it - i.e. losing driving licence, which will impact how well I can do my job, and then having to give up my hobby and big passion - surfing. My body has shown it can have a seizure and so it can happen again and so I am just scared of losing some important things in my life.

However, your advice has helped and I know many have much more to cope with than I do and they do so admirably, so I will try and focus on that and not to worry too much, even though it will prob always be in the back of my mind!

Thanks again everyone.

 

[Bathtub]

I'm not so sure that surfing is definitely out, so long as you don't go alone where there's no lifeguards, and your buddy is aware of the risks and is a strong swimmer, which I would think anyone surfing probably is anyhow. Are there places where there would be a safety boat around, preferably already in the water, or could you maybe go with a group (and possibly even get paid for it)?

 

[Fritz2]

Some places, yes, but most proper surf breaks don't have any of that unfortunately. Surfing is a sport where it's just impractical to have a chaperone really.

You are talking as though I should treat myself as someone with mild epilepsy though, which kind of answers my original question really. The confusion for me was whether I am completely normal with just a now irrelevant past of a single seizure, or whether because of the past I have an indication of epilepsy and so should now always take precautions.

Thanks for your help. I think I do need to make a few changes and stop doing things that could result in game over!

 

[Cardones]

Hey Ben

My history is almost exactly like yours! I had a single event in my late teens. Am now a little older than you and have had no recurrences but like you also have the worry that won't last!

I posted on this forum a while back about the risk of another and someone said after 5 years of no further attacks after an isolated seizure, your risk for another (and therefore it likely being epilepsy that caused your seizures) is down to the risk of the general population. I'm no doctor so don't know if that's right but it seems your neuro has said the same thing to you already so guess it's accurate.

If your risk is pretty much the same as any person on the street I can't see any reason why you should restrict your surfing or life in any way, otherwise that is like telling someone with no heart problems to not go running in case they have heart attack.

If you have a brain, you can have a seizure, so the risk will never be zero, for anyone, but I think by being seizure free for so long and having just had a one time event at the time that, like the others above have said, could've been caused by any teen related stuff, means you are probably now indeed no more at risk than the average guy on the street of having epilepsy. An unprovoked seizsure doesn't mean it was really unprovoked, it just means the doctor couldn't figure out what caused it. The absence of recurrences I'd say was pretty good evidence you are normal and it was not caused by any epilepsy abnormality, so try not to worry too much!

Also if you've been very stressed and tired in the past and nothing has happened that should also be reassuring seeing as you have tested your body and nothing has happened.

I totally understand the anxiety, it will prob always be in the back of my mind too, but in answer to your question, no, I don't think one unprovopked seizure alone indicates a tendency or predisposition. As the others have said, relax, try and forget about it and realise that far more people have unprovoked one-offs than those who have recurrences. Sure, try to minimise stress etc in life but I can see no reason why you would have to do that more than any member of the public. Stress is not healthy for anyone, epilepsy or no epilepsy! As you say, in modern life this is hard to do, but it will help to realise you don't need to stress about being stressed! Your neuro has said you are completely normal. I'd go with that. Seek support from forums like this, but try to avoid asking medical questions etc as the internet will just make your anxiety worse!

Good luck, and go catch some waves!

 

[Cardones]

Just found my original post. Here was that reply I got which I found very helpful and that seems to echo what your doc has said:

"You can relax. After 5 years with no recurrence of seizures after a one-off, your chances of having another one are almost identical to those of the general population. You do not have epilepsy, and should not live your life in fear. Don't stress out over a problem that doesn't exist.

Everyone has a seizure threshold. Having epilepsy just means that someone has a chronically lowered seizure threshold. You do not have a chronically lowered seizure threshold. On one day, at one single moment, your seizure threshold was temporarily lowered, for some unknown reason. Maybe it was something you ate or something you were exposed to in the environment, some combination of ordinarily unrelated factors. It hasn't happened again, and more importantly, 18 years later, there's absolutely no reason to live your life as if it will."

 

[Fritz2]

Cardones, thank you so much for your reply! Very reassuring. So I take it they never found a reason for yours either?
I'll definitely try and concentrate more on dealing with the anxiety as I think that is my main problem.
Thanks to everyone again.