Weird epilepsy triggers…

MAB

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The biggest one for me is aspertame. I didn't want to admit it so I was always blaming the seizures on various other things. The other things, lack of sleep, odors, illness might have made the seizures worse but it has to be the aspertame that causes most every one of them I had a severe addiction to diet pop (4 liters per day). Since I stopped diet pop 2 months ago, I have had maybe 3 very minor seizures.

Before I stopped I had them (SP) several days a week and almost all were status seizures. If I get through the stress of surgery next week I wil know for sure it is the diet pop that caused most of them
 

Belinda5000

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large crowds will send me into seizures it can be 100 ppl or 5000 ppl.
 
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Well you all will probably think I'm crazy but . . turning on water taps used to trigger seizures for me all the time. I don't know why but it was a consistent phenomenon. Most of my seizures when I was a kid were in the bathroom for that reason--even today it can cause auras if my threshold is really low. No idea why that would be but it's been that way for years so it's far too established to doubt it anymore.
 
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I've noticed that a number of strange triggers seem to be sound based--certain voices, even songs (heard a story of a woman in Texas that was triggered by Joan Lunden's voice). I've wondered if it was the sound frequency generated by the sound of the water pressure. Other than that, no clue.
 
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Porkette

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Cell phone trigger seizures for me when I'm around many people in a store or public place and people are using their cell phones the seizures start. It's all do to the frequency and the electro magnetic field that the cell phones are causing.

Wishing everyone only the best and May God Bless All of You!
Sue
 
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A few random places that have triggered at least two seizures:
IKEA
Costco
Buy Buy Baby

Sensory overload!
 

skyfire322

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I can definitely attest to audio triggers. I'm a music engineer by trade, and whenever I have to mix/produce certain genres of music (electronic in particular) I usually start having staring spells.

Not only do the very high and low frequencies affect me, but also if there is a lot of weird stereo panning going on, I typically get migraines and bad things ensue.
 

JJR1956

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Novocain?

I was told by my Nero to tell my dentist that I have E, and to be careful with the Novocain. Anyone else hear this? I don't know why Novocain would be a problem, but that's what my Nero told me a long time ago.
 

Frink

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Novocain?

I was told by my Nero to tell my dentist that I have E, and to be careful with the Novocain. Anyone else hear this? I don't know why Novocain would be a problem, but that's what my Nero told me a long time ago.
I have had Novocain at the dentist with no problems, also laughing gas and full anesthesia, no problems.

I see epilepsy warnings on all types of things that never bother me, video games, T.E.N.S. units, some laser facial device, medications, the list goes on.
 

JJR1956

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Hi Frink,

Sometimes I get a bit speedy if the dentist uses a lot of Novocain. I just had major work on a tooth and man was I given a lot of it. My heart was racing so much. I hate that feeling. That might be the issue with Novocain.
 

Frink

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A couple months ago I had Novocaine for a deep cleaning, they used so much I could not feel half of my head for 2 hours.

For some reason I get so calm at the dentist that I fall asleep while being worked on.
 

AlohaBird

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Both dentists and surgical anesthesiologists have told me that, because I take phenobarbitol which is a barbiturate, my body has a certain level of built-up "tolerance" to most anesthetics so they have to give me extra to keep me from waking up during the procedure. Urg.
 

JJR1956

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Both dentists and surgical anesthesiologists have told me that, because I take phenobarbitol which is a barbiturate, my body has a certain level of built-up "tolerance" to most anesthetics so they have to give me extra to keep me from waking up during the procedure. Urg.
Hi AlohaBird,

I had my shoulder operated on about 6 years ago and woke up as they took the tube out of my throat. I remember dreaming that I was being chassed down a dark ally by a tall man. And as he got closer to me, he grabbed my shoulder. That's when I woke up and yelled, "WHAT THE F**K"!!! That's the last thing I remember. I guess they turned up the gas on me, LOL. Haha...I scared the heck out of the doctor he told me later. I'll never forget that. :eek:
 

seagull

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I did not know that about novcain,Some years ago went to dentist and he gave me 9 injections in mouth I was very ill had sz in chair I had feeling he given me to much but I put it down to him not having clue about teeth and me scared witless...he went on to be kicked off dental listings went back South Africa.
I been using orogel lately like 2years and e has been iffy when used it and far to much.It never occurred to me the link
 
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I remember reading something once about seizures triggered by some kind of repeated phenomenon. Like me turning on the water--just the fact that you come to associate that activity with a seizure, actually causes that activity to trigger one in the future. It's called "Reflex epilepsy"--I just looked it up and found this:

•Other environmental triggers in reflex epilepsy include sounds such as church bells, a certain type of music or song, or a person's voice. Seizures also have been triggered in a few people by things like the patterns of a moving escalator step, tooth brushing, taking a hot bath, or being rubbed

I'll take that as what my water tap trigger is probably about--but from what I read the seizures usually triggered are tonics, absence, myoclonics, and rarely, partials. I was always getting partials from my trigger though, never anything else. My other triggers are sleep transitions (trigger myoclonic seizures, used to trigger complex partials, and once triggered a tonic) and my cycles, which trigger everything.
 
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Oops deleting a duplicate post (sorry computer probs today)
 
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Frink

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For a few years all my seizures occurred in the shower when rinsing my hair, similar to hot water epilepsy. All of my seizures are partials.
 

CathyAnn31

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Lindsay, I can very much relate. Once I was dropping bottles in a recycle bin about 4 feet deep. I was taken over by the sound of shattering glass and was paralyzed for maybe a minute.

Another time I couldn't turn a shower faucet off. The noise was loud, I was frozen and couldn't move. My friend wasn't thrilled with having to wake up, than turn the tap off for me. :p
 
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