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Bcox93

Bcox93

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Good Morning, afternoon, or evening to all =D

I'm new to the forum and haven't really opened up about my situation before to many people. As some of you may be in the same boat as me I would like to ask a few questions.

When I was 19, 3 and a half years ago, the doctors diagnosed me with Epilepsy. Ever since I still to the day have seizures, and the doctors still haven't been able to find a trigger for the occurrences.

Is this normal to not know the triggers of the seizures?

After each seizure my neurologist sends me for tests but they seem not to give the answers, with the doctors and specialists seeming to guess what the triggers are.

Has anyone been in the same situation?


Thanks for your time guys =D

Brad :hello:
 
Bcox93

Welcome to C.W.E. the doctors will not be able to tell you your triggers, there are the usual ones like stress, lack of sleep ect. You will need to find the triggers.

I do not like the idea of your neurologist sending you for tests after each seizure.

Yes there are a lot who have been in the same situation.
 
Thanks so much for the reply and for the reassurances.
I'm glad to have joined this small community.

Brad
 
Bcox93

You are welcome, ask any question you like and the good people here will try to help. Sit back relax and let us help you while you help us.
 
Hi, and welcome to CWE!
Keeping a seizure journal can sometimes help identify triggers. In your case, since your seizures are daily, you might want to write down almost everything you do (a pain, I know) and how long you do them. Eg: Oct 13 - "Computer 90 min, tv 2 hours, video games 1 hour, cardio exercise 30 min, worked 6 hours - boss grumpy and on my back, no time for lunch - coffee and donut only, couple of beers after work . . . " etc. etc. Also note when in the day the seizure(s) occurred, duration, what you were doing before it occurred and how you felt before and after. It might become obvious after only a few weeks what sorts of things lead to a seizure. I did this fairly religiously for a time, but still no specific triggers identified in my case aside from significant illness (which fortunately doesn't happen often).
Sometimes it is not any one thing that triggers a seizure but instead it is several factors combined, such as poor eating plus alcohol plus too strenuous a workout plus stressful workday. This can make it very difficult to identify what will be a likely seizure trigger. When it comes to stress as a trigger, it is important to keep in mind that positive stress like a lot of excitement associated with a big party (even if no alcohol) and a tough workout that leaves you feeling great can be a seizure trigger just as negative stress can, like a rotten workday and an argument with a sibling.
 
Hi Brad, welcome to CWE. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.
 
Welcome to CWE. You'll find lots of people who have gone through what you have. Good to have you here. :)
 
Hiya Bcox93,

I like your kitty cat :)

Yes, figuring out your triggers is a very individual thing. For some people it is bright or flashing lights, for others it is particular scents or loud noises. Those things don't bother me at all.
Also it is possible to have multiple triggers.

For me it is sugar, caffeine, junk food, stress, and lack of sleep.

Sometimes any one would be something you could get away with but when there are several or any one becomes a habit, then you get "The Perfect Storm" effect.

Masterjen's advice about keeping a seizure journal is very sound. It can help you sort out all the information and help you see long term pattern.

Welcome.
 
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Welcome to CWE. As others have said, doctors will only be able to help so much. It is normal not to get the answers you seek from them and the tests they will do. I've had E for roughly 20 years now and my seizures have gotten worse in recent times, and I'm just as confused and lost as ever as to why. To add, I take medication for hallucinations, for which I also do not know the trigger.

I would recommend keeping a diary as others have suggested. There are many things you can try to help reduce your seizures such as diet changes and supplements. It is worth doing some research to see what is available and find out what might work for you. In my case, nothing so far has helped. I would recommend you look up the Ketogenic diet, modified atkins diet (MAD), magnesium supplements (of various types), and coconut or MCT oils. Good luck.
 
Brad, I was diagnosed around the same time as you were.
I was diagnosed properly at 18, and I am 22 now.
I am still trying to find the definitive triggers for seizures.
Through keeping vague diaries I have ideas about triggers, but there are still investigations going on.

But it is totally normal not to know triggers. I wouldn't worry about it.

Sent from my SM-G920F using Tapatalk
 
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