What is it about Church?

happyw5

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My 13 year old daughter had a seizure on June 7th of this year while serving at church. She had a seizure last year in May while serving church as well. She has served many times between without any problems. She has not been diagnosed with anything yet. She is very healthy and happy. The first time it happened (last year-while serving) she was kneeling and fell over, she hit her head hard on a radiator, she shook and her eyes rolled back in her head. I was in the back of church so I learned all this from two women that were up front. She didn't remember anything and was very tired and confused after. We went to the ER, they didn't do much, they were more concerned about hitting her head. She had a few issues after that at school and while camping, she said they felt like she wasn't in her body and de ja vu like feelings.

Fast forward to this year, she was standing this time at church and she fell again. Her brother was with her and said she looked like one of those balloon men, her legs went wobbly and she looked like she got hit by a car, she fell down and her eyes never closed, and she shook again her arms were straighy above her head. She again didn't know what happened and was confused and tired. There was a doctor and nurse there and they said it was definitely a seizure. We took her to the ER again and they ran a lot of tests (CT-blood-EKG) all came back normal. We then continued with an EEG and MRI that also came back normal. We saw the neurologist and he said they can only find a cause in about 10% of epilepsy. He said to watch her and see how it goes. We went to church this morning (she is not serving anymore) but she got sick while we were sitting there. She felt tired and not really there. We left and after about 30 minutes laying down she was fine again.
Is she really having seizures or could this just be anxiety? My brother has severe epilepsy (but he has scar tissue on his brain) She did get a very bad headache right before both of her passing out seizures. That didn't happen today. Should I have more tests done or just keep watching. It sounds awful but those tests are all very expensive and they are not showing anything anyway!!! Any advise or related stories? Thanks for listening
 

AlohaBird

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Is she really having seizures or could this just be anxiety?
The two are not mutually exclusive. From everything you describe, she "really" is having seizures and if you start to say is is all "just" anxiety, that sends her the message that you think it is "all in her head" and are not taking it seriously.

Emotional stress can bring on a seizure in someone who has a lower than normal seizure threshold. Serving in church could be a very stressful moment for a young girl feeling like everybody is watching and wanting to get everything just right. (Not saying that this is the case with your daughter, just speculating.)

Yes, definitely get some more tests done. There are lots of things that could bring on seizures. Things like electrolyte imbalances, blood sugar dis-regulation, etc. Cases where there is a clear structural basis for the seizures like that of your brother are more the exception than the rule.
 

Nakamova

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Sometimes seizure triggers can cumulative, so the actual seizure trigger might be more than one thing over a longer period of time, rather than church itself. Fatigue, low blood sugar/low blood pressure, infection, food sensitivities -- all sorts of physical, physiological, emotional and environmental stressors can act as seizure triggers. Hormonal spikes (which can arrive at puberty) can also be triggering.

I agree with AlohaBird, it's worth getting more tests done, and keep and eye out for other kinds of unusual symptoms or behaviors. There are seizure types that can resemble anxiety or confusion or daydreaming, and she may be experiencing them in addition to the more dramatic kind. You can read more about those kinds of seizures here:
http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
http://www.epilepsy.com/learn/types-seizures/absence-seizures
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures
 

AlohaBird

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Yes, Nak. Good point. In a 13 year old girl, catamenial epilepsy should definitely be explored. (More googling for Mom)

And I totally agree that it is often not just one trigger=one seizure. It is often "the perfect storm effect". For example, not getting enough sleep + the social pressure stressors inherent in being a teenager+ maybe not eating right and/or not eating enough could equal a collective pressure that is too much and pushes the brain over that seizure threshold.

My perfect storm the first time I had a seizure was sugar+caffeine+sleep deprivation+junkfood+stress . Otherwise known as being a college student.
 
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Belinda5000

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The crowds do you sit in the back if you do you might need to sit in the like one of the first three pews. I've had seizures in the Kingdom hall plenty of times so I started sitting up front and it cut down on my seizures .Let your doctor know about every seizure she has.
 

happyw5

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Thank you so much for your responses. My gut tells me that she is having seizures, and I know that tests can't tell you everything. I will be reading up on all the info you showed me and keep talking to the dr. She is actually the one telling me that maybe it is anxiety--because so many people tend to jump to that conclusion and she starts to believe them. I went though about five years of tests myself before I was diagnosed with celiac disease. Thanks again
 

AlohaBird

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Oh? If Celiac runs in the family, there is a lot of good research saying that that could be the cause of your daughter's seizures.

Take a look at the website of Dr. David Perlmutter (drperlmutter.com). He is the author of Grain Brain. The things he is saying about grain would not be new to you as someone who suffers from Celiac disease. But he is also saying that there are many more people out there who have adverse reactions to grains even if they are not necessarily of the GI variety. His contention is that things like epilepsy can be the result of the same kind of inflammatory reaction. While yours manifests in your guts, your daughter's could be manifesting in inflammation in her brain causing seizures.
 

happyw5

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I have heard a lot about the association between celiac and seizures, however, my doctor is not that open minded. Looks like I will have to insist on a celiac panel for her.
 

Cint

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Hi happyw5,

I find your post interesting because I had my 1st Tonic/Clonic seizure years ago on Easter Sunday morning, getting ready for church. And several others either in church or on the way to church. As was mentioned earlier, the seizure(s) could be triggered by a number of things. The first dr. I saw, said I was hypoglycemic and prescribed something. But the seizures kept on. When I ended up in the hospital, it was around "that time of month" and we realized finally that my seizures were catamemial.
But insist on the celiac testing, too.
Good luck!
 

Mr.21T

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Coming up as a kid I had a lot of focal and partial seizures before church. I would often fall asleep like a child even as a teenager. This was before my diagnosis. My parents and others in the church would shame me for embarrassing my family. My causes were sleep deprivation, anxiety and puberty, which came during the onset of TLE.

With your daughter being 13, and women with e having more issues with hormones and epilepsy, it's possible she may actually have epilepsy. I know nothing about being a woman with e though, so I'll back out.
 

Belinda5000

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why do people always say it's anxiety when you have seizures and there not explained?
What I did cut down on my seizures but know one believed me and so sdid the change in meds.
 

AlohaBird

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I have heard a lot about the association between celiac and seizures, however, my doctor is not that open minded. Looks like I will have to insist on a celiac panel for her.
Better yet, buy him a copy of Grain Brain and insist that he read it. It is written by a real live neurologist, not just some quack with a blog.

Your daughter may very well test negative for Celiac because it is not manifesting in her intestines. Just because she *tests* negative, does not mean that it isn't the problem. Gluten intolerance can be very present without overt Celiac symptoms.

It sounds like you know how to put your foot down and get a doctor to listen.
 

masterjen

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Your daughter may very well test negative for Celiac because it is not manifesting in her intestines.
Not entirely true. There are various antibody blood tests that can be positive even if the intestinal biopsy is negative. Although intestinal biopsy has often been considered the "gold standard" for celiac diagnosis, positive results on the antibody tests would suggest to a GI specialist to keep a watchful eye out for potential development of celiac disease even when the endoscopy is negative. Surprisingly, an intestinal biopsy can be positive even if one does not experience intestinal symptoms.
There is also genetic testing: 40% of ALL people carry the genes responsible for celiac disease (but this doesn't mean they have it or will develop it) which means 60% of people do not carry these genes. If one does not have these genes, then they do not have and will not develop celiac disease.
Those who have seizures caused by celiac disease sometimes have white matter abnormalities show up on their MRIs.
 

AlohaBird

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I think we are saying the same thing in essence. Unfortunately a lot of doctors see one negative test, be it the biopsy or one of the antibody tests, and stop there.

There is also such a thing as Non-Celiac Gluten Intolerance in which, genetically a person is one of those 60% but still has symptoms, sometimes GI, sometimes other manifestations such as seizures or auto immune reactions.

The take away is that no one test tells the whole story.
 

happyw5

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Thanks everyone, you have all given me a lot to look into! I may even contact my allergist about the celiac thing...
 

knothing

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One thing that for me has always been true is lack of sleep reducing my seizure threshold thus me having more seizures. With meds it has been reduced to deja vu seizures when there is not enough sleep. Anxiety and stress can have a profound affect on sleep. It should help to sleep more.

Also if you can see another Neurologist to get a second opinion because even though they are 'experts' you should always talk to more than one to start.
 
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Hello happyw5,
The one thing I may have missed here is asking you if there are any certain smells in the church? Flowers, incense, perfumes, candles? There may be some odor that's particular to church and stronger at the front of the church that's a trigger.

One of my earliest memories involves being with my mother at what I think was an Avon party and a cream with a fragrance in it that made my head go all woozhy, so I kept asking to smell it over and over because when you're about 3 years old, it seems fun, right? My official "seizures" started when I was 7.
 

happyw5

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She has never mentioned a smell, however, just last Sunday when she had a smaller episode, she did say she couldn't stop staring at a flickering light. I noticed it as well, when ever the air conditioner would kick in the lights would dim and brighten. That could also explain why it has only happened in the summer-when the air conditioner is running! What do you think?
 

Ruth

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Looks like I will have to insist on a celiac panel for her.
Welcome happyw5, this forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

Let the doctor do a celiac panel and do the diagnosis.
 
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