The mystery of it all

[87sf]

Good evening all.

Does anyone know how many triggers there are for seizures?
For me, I am looking for just 1. I doubt that I am the only person in this predicament though.

My seizure journey began in 2009 when I was diagnosed with "Alcohol induced seizures", I was never a big drinker And had the thought " so this is why I'm never first in line to do shots at the bar". After a short walk down amnesia lane it occurred to me that the grand mal that broke the camels back was probably actually my 4th.

So after leaving the drinking behind, in late 2014 I had 2 nocturnal seizures that my wife observed 4 nights apart (she was still half asleep for the first and she didn't realize what was actually happening until the second one 4 days later).
After a regular and sleep deprived EEG and MRI..... Nothing
The neurologist threw his hands in the air and put me in the too hard basket and got me a prescription for Keppra with the speech " we will never really know if they are working unless you have another seizure and then we know they are not". Not exactly what I wanted to hear.
I have just done a sleep study, that I had to request (it made perfect sense to me to test me while I was in the same state as when I had the seizures), results are still 10 days off.

So, now that I have been slapped with the logo of Epilepsy and feel somewhat screwed due to the words medical meaning (2 or more seizures of an unknown cause) although kind of fitting, I think it's just a lazy out.

Next for me is to find a Dr that will actually prove I have epilepsy by testing me for all possible seizure triggers. I would be much happier with - **** induced seizures. Gives me something to work on.

Thank you for reading my story and please feel free to reply and become apart of it.

87sf

 

[marika853]

Welcome 87,
Just so you know, you are not the only one that this happens to. Drs. don't like to deal with "difficult" cases, or as they refer to us, "idiopathic"! They just like to throw some drugs at you and collect their fee.
The best thing for you to do is to research all that you can on this and try to figure it out yourself. You will be able to come up with more than your dr. who you will be lucky to see for 15 minutes. You need to keep a diary of your episodes. Thankfully, you have someone with you that can fill you in when you can't remember.
You have come to the right place to get answers. They may not be what you like, but you will be educated. And that is always better than not knowing.
Good Luck !
M

 

[seetseet]

I totally agree with Marika, and thank you for writing that because I forget it regularly köszi

 

[Nakamova]

Hi 87f, and welcome to CWE!

So, now that I have been slapped with the logo of Epilepsy and feel somewhat screwed due to the words medical meaning (2 or more seizures of an unknown cause) although kind of fitting, I think it's just a lazy out.

It may be annoying or dispiriting, but it's not a lazy out. "Epilepsy" is really just an umbrella term, more descriptive than diagnostic. (Look up epilepsy on wikipedia to see how many different categories and classifications there are). The important thing to realize is that when you've had more than seizure you need to pay attention. For whatever reason, you have a low seizure threshold, and you are at a greater risk to have another seizure than the average Joe on the street who has never had one.

Next for me is to find a Dr that will actually prove I have epilepsy by testing me for all possible seizure triggers.

I hope you can find out a primary cause. I hope it's something really simple and obvious and easy to avoid. But it's not always that simple: There can be all sorts of triggers, they can work in combination, and they can change over time. Usually there's some sort of primary trigger that sets the stage by lowering your seizure threshold in the first place (say, a genetic issue or head trauma or "unknown"). Then, there is a secondary trigger or triggers that opens the barn door and lets all the horses stampede out over that threshold.

The problem is, even if you know what the primary trigger is (and most of us don't) it's nearly impossible to round up ALL those horses and get them safely back in the barn. For me, my seizures arrived out of the blue when I was 35. Primary trigger = ? Secondary triggers = fatigue, emotional stress, low blood sugar, possible electrolyte imbalance, possible sensitivity to aspartame. Knowing all that doesn't mean that I can avoid more seizures by being a happy, well-slept, well-fed person. (I've tried that -- I still need medication to remain seizure-free.)

However, identifying and avoiding secondary triggers is a great way to take control of your overall health, and it may enable you to raise your seizure threshold so that you are less vulnerable to any triggers that you can't control (like infection or injury). There's good info about that here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

I hope you find a good neuro to work with and get some helpful answers soon.

Best,
Nakamova

 

[Fedup]

87sf

How many triggers are there for seizures? That is a question that cannot be answered I am afraid. We all have triggers some the same, others are individual. Just because an EEG or MRI comes back with nothing as you say is not unusual but for the neurologist to throw his hands up in the air, like you said its time to find a new neurologist.

Keep the best side out until you find a good Doctor.

 

[George__]

^
I wouldn't ditch my neurologist because she worked her butt off, more than my family doctor, to get me into EGG, MRI scans and more tests just weeks after my breakthrough seizure. This was a neurologist who I hadn't spoken to for two years but she did all this for me!

Sadly these tests didn't provide a explanation for my breakthrough seizure and I was given generic advice about not forgetting to take medication, alcohol consumption etc but what more could I ask for?

@OP - if your neurologist is a real cold doctor and you don't feel welcomed then move on. But if the neurologist has put you through tons of tests, medications and answered all your questions then what's the point?

 

[AlohaBird]

Like Nak said there are primary and secondary triggers. My secondary triggers have always been lack of sleep, stress, booze, caffeine, and sugar.
Lately I am doing some research into possible primary triggers, the things that lower my seizure threshold in the first place. (Like you my seizures are nocturnal and classified as "idiopathic". That's MDspeak for "I haven't the foggiest"). If you are interested I would recommend a look at the website of Dr. John Symes, dogtorj.com. There are some people around here who refuse to admit that he might be on to something about dietary triggers because he is a veterinary doctor not a "real" MD. Well, I've had the best that the real MDs have to offer and that's not very good. I'm willing to take wisdom where I find it.
I wish you the best. If you feel like a trip over to Hawaii, not that far from down under, you would be welcome here. We don't have neurologists on this island but we do have traditional Hawaiian healers one of whom is doing wonders for me.

 

[87sf]

87sf

How many triggers are there for seizures?

I do realise how big a question this is and had no expectation for anyone to start listing them all. Just a thought provoking way to begin.
I am thankful to you for your replies and please do list what triggers you have if you know. It would be good to make a list of possible triggers for people to play the elimination game with.

 

[valeriedl]

There are many things that can trigger a seizure.

For me stress, depression, lack of sleep, caffeine and alcohol are the major ones. If there is a good bit of one of those going on, or more than one, I'm almost guaranteed to have a seizure.

I didn't know that alcohol was one until I'd been at a picnic and drank about 4 drinks out of a large cooler. When I went to get my fifth someone said that it was a 'mixed drink' in there. I was feeling pretty good at the party but felt like crap the next day. I just wish it would have been a hang over instead of seizures.

One of the 'side effects' of keppra is that it can make you angry VERY EASY! We call it Kepprage. Since you are on it you could end up yelling at people for just the littlest thing. I'm on it and I do. My neuro had to lower my dose of it once because my husband couldn't handle me screaming and yelling at anything that moved all the time, including him.

 

[87sf]

I have been to Hawaii once and loved the non commercialised parts. Something's tells me I will be back there 1 day too. I am very open to non main stream medical advise, they seem to look at health as sections and no where near wholeistickly enough for me. Native healers are thankfully still around and mostly are wonderful and very helpful people.

Thank you

 

[AlohaBird]

You're welcome.

Many of the supplements and such I'm taking that grow here would also be available where you are I would think.

Details of my trials and errors on thread "My Personal N=1". It's really going very well for me. Meds getting cut back substantially.

 

[87sf]

One of the 'side effects' of keppra is that it can make you angry VERY EASY! We call it Kepprage. Since you are on it you could end up yelling at people for just the littlest thing. I'm on it and I do. My neuro had to lower my dose of it once because my husband couldn't handle me screaming and yelling at anything that moved all the time, including him.

Thank you for telling me that. I still haven't filled my script. I decided to completely cut out alcohol, coffee, reduce sugar, minimise stress (although coming from a very organised family and having a very unorganised wife it's a challenge im learning to deal with), improving my diet and reducing processed food and sinthetic additives, increased good salt and minerals, better hydration and just beginning to do some forms of meditation.

Thank you

 

[87sf]

I just wanted to add to the above that I have only had 3 confirmed seizures in 9 years, so fortunately for my its is not a weekly/monthly thing. Otherwise I would be looking a lot more at taking medication seriously.

 

[AlohaBird]

Also once you do start taking AEDs, your body often becomes dependent on them so later on trying to get off them can be a major hassle.
If your situation is not that terrible, I say, good on you for going the route of finding natural ways to maintain control. That is what I wish I had done many years ago but I didn't know then that I had a choice.

 

[AlohaBird]

P.S. I highly recommend the book, "Treating Epilepsy Naturally" by Patricia A. Murphy, available on Amazon.

 

[MAB]

I been tracking my seizures very carefully and have determined that most are caused by odors. I'm sure there are other triggers but odors , pleasant and unpleasant are causing them. I would sit in my favorite rocking chair every morning with an essential oil diffuser running and have seizures every morning. I bagged up the diffuser and oils and eliminated my morning seizures. Now if I could just get people to stop wearing perfume or people that smoke heavily to stop coming in my office I think I could eliminate the majority of my seizures. (I miss my essential oils.)

 

[AlohaBird]

I been tracking my seizures very carefully and have determined that most are caused by odors. I'm sure there are other triggers but odors , pleasant and unpleasant are causing them. I would sit in my favorite rocking chair every morning with an essential oil diffuser running and have seizures every morning. I bagged up the diffuser and oils and eliminated my morning seizures. Now if I could just get people to stop wearing perfume or people that smoke heavily to stop coming in my office I think I could eliminate the majority of my seizures. (I miss my essential oils.)

Interesting. Cig smoke drives me nuts too. And I hold my breath when I have to walk down the soap aisle.

 

[MorganFree]

I think my triggers are Exercising and trying to push myself way over my abilities and too much booze on the weekends. I get Auras when I run on the treadmill and the 2 times I had full seizures followed a heavy booze filled weekend.

 

[87sf]

Interesting. Cig smoke drives me nuts too. And I hold my breath when I have to walk down the soap aisle.

Odors.... I had never thought of that.
I dislike cig smoke as well, but find it hard going in or near a lot of ladies fashion and accessory shops. Makes it easy not to get dragged into shopping with the wife. And I have to hold my breath walking past pretty nail shops, makes me feel sick every time.
Not sure if odors are much of a factory for my seizures though. Still an awesome observation.

 

[Cint]

I do realise how big a question this is and had no expectation for anyone to start listing them all. Just a thought provoking way to begin.
I am thankful to you for your replies and please do list what triggers you have if you know. It would be good to make a list of possible triggers for people to play the elimination game with.

For me and many women, it is a hormonal thing. Estrogen/progesterone imbalances can bring on seizures as can low blood sugar. That has happened with me also, as I have diabetes, too.

Here is a good place to look for possible seizure triggers:
http://www.epilepsy.com/learn/triggers-seizures