How likely are continued seizures?

[cjole]

This is a topic I am sure has been discussed somewhere, but I am curious.. I was just wondering how likely it is that I will continue to have more siezures?

After the 1st, I began taking meds. I had a lot of trepedation at first, but things settled down, and I almost forgot about it. Then I had the "brilliant" idea of weaning off my meds (feeling that seven years was a long time, and I was just having alot of problems with sleeping.) Anyway, within about 3 or 4 months, I had my 2nd seizure (November of last year) I started a new med, and things went well until January, when I am pretty sure I had a breakthrough. The doc upped my meds, and I haven't had any problems since.

Anyway, I thought I read somewhere that each seizure makes it more likely you will have more. Is this something I really need to worry about, or do I just try and get on with my "life", and hope for the best. It's something that has had a great effect on my life, as I have noted in other posts, but how do I stop it from ruling my life?? It's almost all I think about. Everytime I get a strange sensation, or my eyes feel funny, or whatever.... I am just about driving myself nuts, know what I mean??

I'd appreciate it if you all would let me know what you think, maybe I am just letting this rule me for no reason?

Thanks!
CJ

 

[Nakamova]

Hi cjole --

It is the case that the more seizures you have, the more seizures you are likely to have -- but if your seizures are well-controlled by medication or other means, then this is not something you need to worry about. You have had relatively few seizures, so I would put this at the very bottom of your "worry list." Also, the brain has an amazing capacity to re-wire itself, something that techniques like neurofeedback take advantage of. Just as your brain can get in the habit of seizing, it can also get in the habit of not seizing. If you have the opportunity to try neurofeedback it might be worth training your brain for seizure control before trying to go off meds in the future.

Often, after a long period of seizure control (such as the seven years you had) it is worth trying to wean off medication to see if you can maintain the control. It's a personal decision -- the risk of having another seizure vs. continuing with meds and their side effects. I've tried to wean off (with doctor supervision) a few times without success, but each time I've learned more about what I might need to do the next time in terms of eliminating seizure triggers. I think the medication itself is a trigger, at least during the tapering off process. Your body gets used to having the drug in the system, so once you remove it your seizure threshold lowers again. (Basically, it's like ripping off a bandaid -- too soon and too fast, it can re-open the wound). For this reason I would advocate a very very slow gradual tapering process -- a year, as opposed to the weeks or months that doctors recommend.

I would recommend that you read "Epilepsy: A New Approach". It's a great book in helping you put your epilepsy in perspective (so you don't become anxious or obsessed), and also in offering alternative strategies for seizure control).

Best,
Nakamova

 

[Chris515]

Hi CJ,

I have gone through a similar situation. Nakamova is right, the brain can get in a habit of seizing or not seizing.

I had periodic seizures (mostly Simple Partial and some Tonic Clonics) for 12 years, then went for three years without a single moment of activity. Life was good, things were going well for me (no stress!) and I was thinking of going off my meds. Well soon after I had a SP, and it just went from there. For a while I was having a few every week. I upped my meds and things got better, and since then (the last 2 years) I've had periodic good spells and bad.

It's hard to not let it rule you. I've had some really depressing times, but I've broken out of it and just accepted this is how my life is. It could be a lot worse, and I do have many good things to keep me happy.

Trying to stay positive is key.

Maybe consider neurofeedback too. I'm looking into it for myself, but I'm not sure I can afford it.

Chris

 

[dfwtexas]

My neuro said there are a lot of factors, number of seizures, type of seizures, if the cause of the seizure is know, what part of the brain your seizures involve, etc.
I was asking because my father had 2 seizures, took seizures meds for 2-3 years and then was able to wean off (with neuro's close monitering) and has never had another seizure since. (Its been over 25 years for him).
My neuro told me that more likely I will never be able to go off seizure meds. He told me EEG showed seizure activity in two parts of my brain. He said process of removing someone off meds (in particular in my case that I have breakthru seizures when med levels were not high enough), the possiblity of triggering seizures would be very high for me. His concern that I would have seizures in both parts of the brain at the same time and I might not survive that.

 

[Chris515]

Yeah I'll never be off the meds either. I have brain damage in the temopral love from birth trauma and apparently I'll always have the chance of having one.

I guess it all depends on the cause of the seizures, sometimes they can go away and sometimes they are here to stay.

 

[dfwtexas]

I had multiple infections due to a trauma to my arm. The infections actually got into the bones.I had to be on heavy duty IV antiboditics for 2 years, had a 24/7 pump. They suspected either one of the infections or the meds did permanent neuroligical damage.

 

[RobinN]

This habit is called Kindling. You can Google that and learn a little more on the subject.

I do believe this is what was occuring with my daughter. Neurofeedback trained her brain not to need to seize. However, it has only been due to making nutritional changes that her body is not at its highest seizure threshold. For us it has been a combination. It was also mentioned to us how important this was, before beginning the NFB therapy.