New - Food-Triggered Siezures
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UPDATED: Tue, 03/18/2008 - 10:11am
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Black....
Epilepsy triggers?
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hi
i've been diagnosed with Epilepsy for two months now so i'm quite new to this and i still dont know much about it.. my first seizure ever happend after i took a fluetab (i got it over the counter coz i felt a beginning of a cold) and about 20 minutes after i took it i had my first seizure ever.. two days later i woke with a small headache but by 7 that afternoon it grew to a pounding headache and it was becoming hard for me to even sit with the TV on even though i wasnt watching it just the noise of it was bothering me.. so i took panadol (also i got over the counter for my headaches) same thing happend i had another seizure and then 10 minutes later i had another seizure.. at the time i didnt know it was seizures i was having till i was rushed and admitted to the hosptial for 3 days and was diagnosed with epilepsy.. i was weird coz i use to always take panadol for my headaches but the past year or so my headaches have gotten worse and last longer.. i also have been experiencing an electic shocking feeling in my head for years but have gotten worse the last few years aswell.. another thing i would like to mention these seizures happend about 9 days b4 my period.. i havent taken any medication since for my headaches.. they could last anywhere from an hour up to 3 days.. i had two more fits after i started medication but they were all around the same time as my period.. also the last two seizures happend after i had an EEG done.. my questions are:
Could over the counter medicines be triggering my seizures? could my period or being close to time for me to start my period be a trigger as well? or the flashing lights? is it possible to have more than one trigger? and if they are trigges do i have to have a seizure right after having the trigger or not? the last fit i had which was yesterday happend the day after i had the EEG done but my period should be starting next week.. and the seizure b4 that happend after 5 days of takin an EEG and it was the same day that my period had finished..
sorry for writing to much but would really appreciate your answers..
By Black.... at Tue, 03/18/2008 - 10:11am | 933 views | 57 comments
Topic: Women With Epilepsy
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Recent Comments on this Discussion
It is very likely that you have multiple seizure triggers. Medications could certainly contribute. I would check with your doctor. It seems that when I experience one or more triggers at the same time, I am likely to have a seizure.
I have found that hormonal changes just before or after my period, and at ovulation, definitely are a factor with grand mal or milder seizures. I just had a grand mal on 11/04 and got my period the next day. I am in my mid 50's and going through perimenopause. I had only had 3 grand mals in my life until 2 years ago. I have had multiple GM seizures since then, and am sure they are often due to hormonal changes. (Puberty was awful!)
Stress is another thing that can exacerbate or bring on seizures for me. I'm not a hyper person, but I have learned that I have to watch out for stresses related to hectic schedules, my job, emotional stress - I even have to watch how involved I get with news, politics, etc. (Not that I do not stay in touch and involved . . . .) Stress is a tricky one to watch for, but you have to learn to monitor yourself and "catch yourself" if you begin to feel stressed out over something. Stop, take some slow deep breaths, and find strategies to defuse the stress. I often remind myself it isn't worth getting upset about, and try to do something positive to deal with it (praying, walking, etc.)
Not getting enough sleep is another seizure trigger. It's hard, but I am trying to get enough sleep. My husband has noticed that a change in my schedule also seems to be stressful for me. Flashing lights and hyperventilating also cause me to have seizures. These last two are often used during EEGs to evoke a seizure so more information about your seizure type(s) can be determined.
If you are not seeing a neurologist already on a regular basis, I would highly recommend doing so. It sounds like you have been dealing with epilepsy for quite awhile, and medications could help you get it controlled. It can take awhile to find the right meds and dosages, but I believe most people with epilepsy can get some measure of control with meds. Make sure your neurologist checks into those headaches, too.
I hope by now you are doing better! Take care & God bless.
Karen
"You sure you're alright?" I've been virtually a parade-leader when it comes to telling people that I have epilepsy, the common neurological malfunction (not "disease" per se), but in doing so I can't help noticing how anybody sharing a meal, an entertainment event, everyday activities or communication requiring more than instant-to-instant feedback from me cannot stop themselves from asking this question. "You sure you're alright, my friend?" I can be putting down a fork while enjoying my scrambled eggs with cheese in the morning. Looking through my wallet to find my dry cleaning receipt when picking up something that's ready. Or even trying to find the right key to use in my building's front door. While a friendly inquiry is appreciated, I've come to see that this kind is asked far too many times. Maybe to the point where I wonder if I am not appearing well. No, don't stop the interest, buddies. More of it would keep this world of ours friendlier. But except for an occasional call from "Mama Neurology" when I truly feel a seizure arriving, I am fine and loving all the great moments I've been given.
Flashing lights and I are mortal enemies. I actually got nailed one day because my company was doing a promotional photo shoot. For most people, a flashing light is just a flash, to me it's the equivalent of lightning going off inside my head. Much as I appreciate the work that the firemen and the emt's do, whenever they pass I have to shade my eyes. And whenever I see a flashing light in a store for an advertising come-on, I always mention to the store owner that it's a bad idea as the extra couple of bucks it might get them would be more than offset by the business they would lose if someone has a seizure in their store in front of the light. Usually they take the light down in a minute or two.
As to the OTC meds, most of them are variations of 'speed'. Whenever you see something that ends in 'ine', it's a stimulant. I'm not sure if it's a problem for me, but I try to avoid them anyway. Why bother taking the risk.
And yes, it's definitely possible to have more than one trigger. The trick is to figure out what yours are and learn to avoid them. I'm sure that sooner or later I'll trip over other ones that I wasn't aware of and discover more things that I have to avoid. Oh Joy.
Matt
Matt
Hi,
Flashing lights have been in my program ever since I knew seizures! I usually will try to walk it off or I get nauseated and hit the bathroom to throw up and the next thing I knew I don't remember. The flashing lights will go to one eye and grow from left to right. It started during my 2nd menstral cycle. I thought it was the official curse of the menstrual cycle and asked my mother and then I noted I woke up in the ER quite often even when I was not at home each time they informed my parents the reason for the fever and the change of color in my face, limp on my one side, and was do to the seizure disorder. The emergency room refered me to a nice neurologist that I saw for about 20 years. It is kinda funny when someone thinks it is normal and then they have to tell you it is abnormal especially the headache that follows sometime a seizure and I thought that was normal. The doctor looked at me and laughed and said most patients stay in a dark room. I told him I slept a lot in a dark room and kept the dog out too because I had a royal headache!
This started in my early teens!
Now, stress, family, certain music, sounds, flickering lights, music, smells, alot of different things cause my sz.
I have had 2 surgeries and a VNS, my system reacts differently and has different auras in addition.
I know I've commented on the "tasty-but-nasty" elements of coffee, but I'm sure that more than one of we 3-million Americans sporting epilepsy will shout a loud "Yes!" if asked if flashing lights bring on seizures or feelings of upcoming ones. This morning here in my Brooklyn neighborhood there were several city-sponsored street repair trucks out digging up old sidewalks, pulling out rusted, century-old water pipes and getting ready for new paving of the area. And...all of those trucks had on those mustard-yellow blinking lights in front of, in back of, and over their vehicles' roofs. Probably a city requirement to warn walkers and drivers of the hold-up in the street. Needing to walk down my street with that myriad of flash aiming at me, I eventually had to cover my eyes and walk virtually in the dark. When I was watching every yard or so, I couldn't help notice how many so-called "regular people" (those most likely without epilepsy) were doing the same thing. Yes, flashing lights definitely do hit our neurological system with a bang. I've had seizures from them, shown panic when faced with them, even decided not to shop in stores using flashing lights as part of their sales pitch. How about you?
Worry Cause Seizures -- Or Seizures Cause Worry?
I know that sounds like a dumb question, but over the years I've noticed that when I get too overly-concerned about anything, I can count on a seizure hitting me in the next couple of days. But then, I sometimes think that if I haven't had a seizure for a while, I'll start to think too much about when and where it'll happen! Sure, caffeine brings on my short temper and dizziness, but am in trying to phase coffee and other goodies containing caffeine out of my intake entirely. But then, blinking lights, being overtired, the roasting-hot summertime weather, even headcolds can do evil things to my neuro system. Man, if all of we 55-million people 'round the world who have epilepsy would volunteer to be so-called "lab rats" for testing purposes, an answer might be found. My friends, you're not alone!
hi ,am an epileptic for 30 yrs, have come to notice a few triggers. One definetly is hot water bath which I avoid. I also get minor/major attacks if I loose my sleep. I also noticed minor attacks attributable to flash lights.
hi there,
the triggers for sz are different for everyone.
for me its very different Ive had E for 24 yrs I had to have surgery for it so "the big ones" I no longer have
before the surgery I wasnt very aware of my triggers now these are them
what i have started to do is I start to write everything down in a carry along calendar so that I can put the puzzle together.....
I also know that i cant take over the counter meds becauce they interact with E and with E meds
I hope that was a little help if anything another person to ask is Adz he is very helpful
God Bless you
`Christina Vargas
Drinking alcohol isn't really the trigger for me. It seems to be the dehydration and lack of sleep of the hangover the next morning! Not to mention I tend to forget my meds when I party :( Also, it must fall on the 3-7 day's of my period. Because of this I had my progesterone levels tested at different stages of my cycle. It drops way down in the beginning! This may be a cause.I can definitely tell you that I am sensitive to allot of things but they don't ever actually result in seizures.
I was diagnosed with epilepsy at 20 years old. I am know 42 and still having them. Not as ofter but when I do it is always before my menstrual cycle. I usually increase my meds at that time which seems to be helpful but not completely under control. I have been told to avoid flashing or strobe lights. It is extremely frustrasting not knowing when the next one will come along. I exprerience grand mal seizures which only last less than a minute but in the beginning they could last up to 15 minutes. I was in a really bad car accident when I was 23 yrs. old. I woke up in the ambulance and didn't even know what happened. I walked away without even a bruise. Flipped my car 3 times and totaled it. Luckily no one else got hurt. Ever since that day I fear driving all the time. Life does go on but it sucks. I currently take 500 mg. Keppra twice daily. I also take 400 mg twice daily of Lamactical. It just seems that everytime I talk to my doctor he just keeps increasing the meds. When does it stop? I feel your frustration. I always try to focus on the fact it could be alot worst. I had a friend at 37 who died of cancer leaving a 5 year old, and a 2 year old without a mother. It does get easier.
I have many triggers to much caffeene, Greentea, Yogurt, Actone which is in fingerpolish nail remover ti paint thinner, getting to hot in sun, stress, being upset, not enough sleep. An achol is non it interacts with medication an some people cant drink grapefruit juice due to type med they take. everyone is different on there causes that triggers them. I have certian nintendo games throw me into them but i can go to concerts and play the play station.
why yogurt? my daughter eats alot of yogurt and does have seizures.
hi. well as far as triggers go, there are plenty. i have found a lot........when i was in my teens i always used to get one around the time of my period. other triggers include: overheating, tiredness, stress, bright/flashing lights, swimming, (esp in warm weather), sport, missing medicine and getting overworked which leads to stress or being overtired. as for other meds triggering seizures, discuss it with your doctor, and consider these questions when you consider it for a trigger. did you always take panadol for aches and pains? did it just start to be a problem only after you were diagnosed with epilepsy? have you any allergies to any medicines? if it was only problematic AFTER you were diagnosed, and you were using it before, then it may be a trigger and get a painkiller that doesnt have panadol in it for you. check also for allergies to any meds.hope this helps and good luck.
Many antihistamines are powerful seizure triggers. This is paricularly true when ingested, instead of used as a spray. It is almost impossible for me to take a strong antihistamine pill without having a really good grand mall set off. They have come out with some newer large molecule antihistamines that supposedly cannot past your brain filters, but they still will cause rashes of the smaller seizures... there have been some pretty good studes done on this. This is not just my experience.
there are a whole bunch of meds that trigger seizures. Reglan the stomach drug does.
In terms of chemicals and food additions there is a lot list... but the most powerful seems to be MSG. One of the red food dyes is really poweful but, it is one that they do not use any more because of other problems. They used to use that and MSG in cheap hot dogs years ago.. and a cheap hog dog would trigger a seizure in me and many others... and for many of us we thought it was the hot dogs.. but discovered it was the ingredients used in the cheap ones.
Nutmeg and few other spices can trigger seizures in some. Actually what happens is not a triggering of the seizure in most times... but the lowering the person's seizure threshhold. There used to be some really great listings of high triggers and medium triggers and possible triggers.. in terms of meds and foods on an old web site.
WALT
OH MY GOODNESS I AM SO HAPPY THAT I FOUND THIS WEBSITE. ITS GREAT. I NEVER KNEW THAT SO MANY THINGS IN EVERYDAY LIFE ESPECIALLY FOOD COULD TRIGGER A SEIZURE AND I HAVE HAD EPILEPSY GOING ON SIX YEARS NOW. NICE TO FINALLY FIND PEOPLE WHO UNDERSTAND AND KNOW WHAT ITS LIKE. INSTEAD OF PEOPLE WHO JUST TELL ME THAT I AM JUST TRIPPIN. SO WITH THAT BEING SAID, I THINK THAT ICECREAM AND CHOCOLATE ARE TRIGGERS FOR ME. WHAT DO YOU GUYS THINK ABOUT THAT?
I haven't been able to identify too many of my triggers as there doesn't seem to be any kind of consistency with me, but I've definately noticed that the ketogenic diet did REMARKABLE things for me, bringing my fits down from up to 180 per day to 4 whole months where I was totally fit-free. In general though, gluten and sugar are two things I've learnt to ignore completely - and apparently these are incredibly common! As epileptics, we need to keep our blood sugar levels as stable as possible, so high fats and proteins can be beneficial / low GL diet. It's worth a try - and elps lose weight too, so there's a double bonus! Skiing was also BAD news as was a cruise
I too take Keppra (2000mg per day). I began at 3000mg per day. However, we're trying it a bit lower now to see if it makes any real difference in the amount and/or intensity of my seizures. As it stands now, I can count on one seizure about every 3 or 4 weeks--most often while I'm sleeping or just after waking up. It does make me a bit crabby, but if you'll read about the side effects of this pill, you'll see that it's common. I would complain about it if I hadn't tried about 20 other seizure-control pills over the years. My worst so far have been Tegretol and Dilantin. So it's with Keppra I'm going to stay. I just have to tell myself now and then that as much as I love life, I have epilepsy...and probably always will. Triggers? Being overtired. Drinking coffee. Flashing lights. Hot & humid summertime weather. Colds and the flu.
hi George,
I too get them only in bed, usually while I am just waking up. I have just recently began taking Keppra and hope that it will diminish the seizures. Although they are only lasting a few seconds, it is really discouraging !
Regards,
Samuel
Matt
I have found that one of my huge triggers (besides flashing lights of course) is the spice nutmeg. It will knock me down with only a little bit. You would be surprised how many foods it is in, and it is not required to be broken out on an ingredient label, it is just listed under the catchall of 'spices'.
Dangers for me include cookies and pastries, certain BBQ sauces, most curries, cream soups, jerk rubs, various spicy ethnic foods (which I love), bratwurst (a great disappointment for a WI boy, it means I can never go home again), Valentina hot sauce, colas, and many other foods I have discovered by accident. My most recent find was that I can never have another Animal Cracker for the rest of my life.
I am not the only one with this sensitivity as my best friend also had seizures because of it. Watch out for Middle Eastern foods, Italian foods, Jamaican foods, and especially Ethiopian food :(
MCS
MSG a huge trigger (in most mixes, ethnic foods, chips, canned soups ect)
Asparatame (diet sodas)
Gelatin, Legumes, Gluten
Try the G.A.R.D it stops seizures for MANY people.
Basically gave daughter Maggie her life back.
www. dogtorj.net
well I just found out at least this month that period triggered my sz big time my migraine my depression and in a long time I had more than 10 complex partial sz in a day I was frieking out....every mouth now is different I gotta go with the flow
the 3-d does start setting my auras off so do the flashing lights in movies or tv shows
for me if my sugar drops I start getting auras
migraines set off my auras as well
:cvargas
I also have migraines and they trigger my seizures sometimes. I have had seizures for five years now and I am glad to hear someone else has triggers from migraines also. When I first started having seizures I was working in a cabinet factory and painting was by job. I worked for a whole year and nothing happened . One night my fan went out that draws the fumes uot and I inhaled fumes for about 30 minutes. It made my heart feel like it would jump out of my body. Two days later at the job I fainted and started having seizures. They were grand mal and lasted for about 2 or 3 minutes and started again. I have been having them off and on again since then. They quit for about two years after starting on Dilantinand antidepression meds. I now am on dilantin, cymbalta,zanax,pnenabarb,inderal and imitrex for my migraines.Also flashing lights,loud noises willtrigger them also. God Bless everyone that is going through this , but we are not alone.
I was wondering about all this new 3-D stuff that's hitting the market
I have many things trigger my seizures
Period sometimes which they gave me diamox to take around then an has helped it.
Acatone triggers my seizures which is in fingernail ploish remover to paint thinner to many other things.
Certian types heat cause me to have seizures
Video games from Nintendos Certian games
To Much Green Tea since green tea speeds up my matabolism
Not Enough Rest causes them also
An Yogurt it interacts with meds even my doctor said he could told me that.
Black.Pearl
I can relate to some of what you are going through. I found out that I had Epilepsy about 2 years ago, i was scared to death. My first one with Friends and my boyfriend, we were doing movie night @ hour house. Everything was fine, about 30 minutes into the movie I started to feel tingling in my lower lip. I really didn't think anything about it at first. So I took a drink of Diet Coke and waited a bit and then my lip start to go numb "this was on my left side" it was getting worse. Without saying anything to anyone I went to go to the bathroom. When I went to the bathroom I had put my hands on the counter and was looking into the mirror and the next thing I knew was that I noticed that my Jaw was going one way and my head was going another. It was going so fast and then I started to hyperventalate. The next thing I knew I was out. When I woke up I had 3 paramedic's over top of me. My boyfriend calling my name and my friends there. I had no knowing of what had happened @ all. other then what I had just said. They wanted to take me to the hospital but I refused and wanted to go to bed. It took a long time to convince them, but the left. I got my boyfriend to put me to bed. But from what I understand was by the time my boyfriend got to me I was Dead weight and had a hard time geting me out of the small bathroom we had. I have ad a few since then and Now on meds for it. Which to me I don't like taking meds exspecially stuff like that.
But my point to all this is that for all the ones I have had, I went throught the same thing. I was on my period or was between a week of getting it. I had not realized that until about a month ago. I was doing some research on one the meds they had me on. And found out that seiures can be cause by your period which i thought was reall screw up. So your period could be triggering your seizures. There is a name for it but I can't think of it right now. but if you want to know more let me know and I will see if I can find out what the name of it is for you.
I was diagnosed with Epilespy when I was 11. Since I have have had atleast 100 seizures and I am now 18. So a lot fewer than some people. I noticed my biggest triggers are flashing lights and stress. I had my worst one a few years ago when friends and I went to get pizza. In the pizza place a light was getting ready to blow and was flickering really fast. I noticed it was bothering my eyes so I walked outside, but later that night at our lil girly get together I had a horrible grand mal. So I have learnt to try to avoid things like that. As I am sure you have all noticed most epileptics have very sensitive eyes.
I was diagnosed with Epilespy when I was 11. Since I have have had atleast 100 seizures and I am now 18. So a lot fewer than some people. I noticed my biggest triggers are flashing lights and stress. I had my worst one a few years ago when friends and I went to get pizza. In the pizza place a light was getting ready to blow and was flickering really fast. I noticed it was bothering my eyes so I walked outside, but later that night at our lil girly get together I had a horrible grand mal. So I have learnt to try to avoid things like that. As I am sure you have all noticed most epileptics have very sensitive eyes.
Hi,
I also feel like my period triggers my epilesy. Just found out one week ago, that for sure it was seizures.
Hi,
The only time I have seizures is when I am about to start my period or I am on my period. Doctors say it's commom in girls because of all the hormonal changes we go through. I started my period in 6th grade and a month later I started having seizures. And yes, flashing lights do trigger seizures. My friend can't even watch fireworks because they trigger her seizures. Also strobe lights can trigger seizures. Good luck and god bless. =).
~Kristena
Hello,
I have the normal ones and some strange triggers. The smell of vanilla, when I am in a vehicle and we are going through groves of trees in the daylight (the flashing of light ), and once I tried using "selsum blue" shampoo (awoke in bed three days later. ), then stress and lack of sleep. I can not eat chile powder, I love chile but it must be fresh or frozen.
I sure there are a few more but that just a few with me
Good Luck no alleykat
Hey there:
I got epilepsy when I was 12 - right after my period started! So, yes, seizures happen because our hormones go crazy with the menstruation. Some classical music and stress cause seizures for me.
A lot of things can cause seizures for people. Read up on it. Books really help.
I also get headaches. I read that headaches/migranes are common with epilepsy. Tell your doctor, because they can prescribe meds. What I take is Maxalt-mlt. It melts in your mouth and responds quickly.
Good Luck....
Triggers for me are always my period and at odd times: eating, but I don't know what.
Yesterday I ate for both lunch and dinner: seashell pasta, tomato, sausage, bay leaves, muenster cheese.
As soon as I was done with dinner I started getting the weird feeling and stared at the plates for what felt like eternity, until my roommates cleared out and left me sitting there. Finally I went to watch TV and couldn't control my head as it kept wanting to jerk to the right. Since it was light enough activity I kept fighting in the other direction, so I ended up looking like a bobble head doll. I kept thinking it would develop into my usual sz but luckily it faded away. I ate it earlier without incident...
OH! I also had some strawberries, angel cake, and Cool Whip my roomie gave me. Hmm...
It's possible it was just your period kicking in and the fluetab was a coincidence, esp. if you now consistently react to your period. It sounds as if you already had warning signs this was developing, the zapping sensations and such. I would probably take it again in the future and see what happens. If you don't seize then you know it wasn't your trigger, no sense avoiding something pointlessly. And if you do, you know to look for whatever ingredients in it that other things may have as well.
Has your doctor ever checked your metabolic system for protein issues. I found the root cause
for the seizures and migraine/auras was a metabolic disorder. I have to be on a limited
protein diet and take special medicine along with meds for migraines and seizures. Being
compliant has cut issues way down. Had hyst. so period is not issue. I do have to watch out
for weird triggers every day.
Hi-
I started having seizures when I was 4 and was put on meds. Then the docs said I "grew out of them" by age 13....they took me off of my meds and then I began having seizures again when I was 20. I've had them until just recently (now age 28). They seem to be in remission...if that makes any sense. I guess my body goes through phases? I hope this "dormant" phase lasts long enough for me to get pregnant a few times and have my kids before they start up again.
Mine are not around the time of my period, but seem to crop up when I am stressed. I discovered an unusual trigger recently. I am highly sensitive to MSG (the preservative used in chinese food). It used to just give me migraines when I ate it, but a few months ago, I had a seizure almost immediately after I ate some chinese food. I called the restaurant, and sure enough....they had used MSG. I had been seizure free for almost a year before that happened.
I've changed my diet a lot and that seems to help. My seizures are identical to what user "mangomelee" describes below. I'm guessing they also have temporal lobe seizures.
Basically, just watch what you eat....try to limit the amount of toxins you are taking into your body......buy organic if you can and limit alchohol, etc. Doing this has also helped with my migraines, as well as seizures. If your body has less to process and eliminate, it might get less overwhelmed and neurologically "jittery".
I am really sorry you are going through this. I hope things improve for you and you find some answers for your condition.
Peace, and God Bless you....
Jennifer
HI B, FIRST OF ALL THE CAPS ARE FOR THOSE WHO HAVE IMPAIRED VISION, I'M NOT SHOUTING AT YOU. MULTIPLE TRIGGERS ARE COMMON FOR SOME OF US BUT NOT ALL, OBVIOUSLY. SOMETIMES SMELLS, LIGHTS, AND THE BIG ONE ANXIETY OR PRESSURE, CAN BE TO BLAME. HAVING TO GO FOR AN EEG CAN PUT A LOT OF PRESSURE ON US, AND THIS COULD BE A FACTOR.
LAVENDER IS OFTEN RECOMMENDED FOR CALMING PEOPLE DOWN, PERHAPS THE SCENT OF LAVENDER COULD HELP TO BALANCE OUT THE SITUATION - IF THE ANXIETY WAS A TRIGGER. CHECK WITH THE USE OF LAVENDER WITH YOUR DR FIRST, DON'T JUST FOLLOW MY LEAD. HOPE THIS HELPS.
TLBY&KY
ADZ
HI, EVEN THOUGH I'VE BEEN LIVING WITH E. FOR BETTER PART OF 40 YRS, ONLY LAST FEW YRS I'VE BEEN MORE AWARE OF TRIGS. IT WAS IN EFFECT ALL THOSE YRS, BUT I DIDN'T HAVE THAT KNOWLEDGE. FOOD- WISE, RECENTLY DISCOVERED THAT 'GINGER' IS A TRIG. FOR ME.
AMPLIFIED SOUNDS-VOICES AND MUSIC, ESPECIALLY PERCUSSION INSTRUMENTS. BACK IN ERA OF SOUND SYSTEMS WITH LARGE FLOOR SPEAKERS, HAD TO STOP ATTENDING CERTAIN EVENTS, ESPEC. IN ENCLOSED BUILDINGS--CLUBS, CONCERT ROOMS ETC. AT OUTDOOR EVENTS, HAD TO MOVE FAR AWAY FROM SPEAKERS. EVEN LIVE DRUMMING WOULD AFFECT ME AT TIMES, BUT DIDN'T KNOW WHY. RECENTLY STOPPED LISTENING TO SOME 'RELAXATION/MEDITATION/YOGA CD'S BECAUSE OF THE CHIME-LIKE , HIGH PITCHED SOUNDS. LEFT LAST CHURCH WHEN THEY SET UP SOUND SYSTEM( FOR BAND & CHOIR-VOL. WOULD BE UP HIGH, AND IT WAS HORRIBLE FOR ME); ALSO GOT RID OF MOST OF MY WIND-CHIMES--FOR THE SAME REASON. CONTEMPORARY MUSIC W LOTS OF HEAVY BASE ARE PROB. TOO. THIS MAY SOUND STRANGE, BUT A PERSON RIGHT NEXT TO ME SPEAKING IN VERY LOUD, HARSH OR HIGHPITCHED VOICE FOR LONG PERIODS ALSO HAS SIMILAR EFFECT. EVEN USING COMPUTER AND SCROLLING UP/DOWN REPEATEDLY AND READING LOTS OF PRINT ON SCREEN. CROSSING STREETS WITH RUSHING SINGLE/DOUBLE LANE TRAFFIC IS SO HARD AND SCARY FOR ME. USUALLY TRY TO FIND PEDESTRIAN CROSSING AT JUNCTION W TRAFFIC LIGHTS. ISN'T ALWAYS THERE.
REACTIONS: I GET A FUNNY SENSATION IN THE PIT OF MY STOMACH; SOMETIMES ALMOST SICK, NAUSEOUS FEELING; STRANGE ACHY FEELING IN HEAD; FUNNY SENSATION BEHIND EYES; FUNNY RIPPLING, JITTERY SENSATION UP AND DOWN AND THROUGH MY BODY; FEEL UNFOCUSED AND OUT-OF-SYNC. IF I REMAIN IN SITUATION, GET HEADACHE, JUMBLED THOUGHTS AND SPEECH, AND WHAT I CALL THE 'SEIZURY FEELING'
KNOW THAT WAS A LOT. THANKS FOR GIVING ME THE CHANCE TO SHARE. PEACE & HARMONY
MANGOM, YOU HAVE A LOT OF THE SAME TRIGGERS I DO, BUT SOME YOU MENTION DON'T BOTHER ME. I HAVE A LOT OF MEDITATION CDS. I THINK I WILL START PAYING ATTENTION AND LET YOU KNOW IF I HAVE SOME THAT DON'T HAVE THE TRIGGERS YOU MENTIONED. IT'S REALLY SAD THAT YOU HAVE SO MANY TRIGGERS, ESPECIALLY TO MUSIC THAT IS SUPPOSED TO BE FOR MEDITATION. THE DOCS HERE RECOMMEND MEDITATION FOR SEIZURES.
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
Hi jan, Hope all's good with you. Just rereading your comment from Sunday. thinking about it, it's not all that bad. Am such a passionate music lover, that i substitute with selections from other genres that have the same positive effect. Also look forward to getting the names of any in yr set, that are minus the trigggers.
Thanks in advance.
Peace & Harmony
WELL, I AM GLAD YOU CAN LISTEN TO SOME MUSIC! SO FAR, THE CDS I MENTIONED ALL HAVE TRIGGERS FOR YOU. I THINK I WILL TRY SOME I HAVEN'T LISTENED TO IN A WHILE AND SEE HOW THEY ARE! I DON'T KNOW IF PLAYING THE MUSIC VERY QUIETLY HELPS, BUT IT DOES HELP ME AT TIMES. ANOTHER THING I WONDERED ABOUT.........DO YOU HAVE A WAY TO MAKE CDS WITH ONLY THE MUSIC YOU CAN TOLERATE ON THEM? I NOTICE SOME THAT I HAVE DON'T HAVE YOUR TRIGGERS THROUGHOUT THE ENTIRE CD. YOU MAYBE COULD TOLERATE PARTS OF DIFFERENT CDS. WHY DON'T YOU BLOG? I DON'T KNOW VERY MUCH ABOUT YOU!
I ALSO JUST REMEMBERED THAT AT TIMES EVEN THE NOISE FROM THE FRIG REALLY BOTHERS ME. DOES THAT HAPPEN TO YOU OR ANYONE ELSE, I WONDER?
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
My seizures are IDENTICAL to yours, but my triggers are different. It's amazing how eloquently you put how it feels to have a seizure. I've never met anyone who has them the same way I do. Nice to know I'm not alone! Glad I found this website.
God Bless,
Jennifer
Hi Jennifer, thank you posting those comments about the similarity in seizure. I feel heaps better !! It isnice to know one is not alone. Even though you know what you know, it's very frustrating to explain to others, and even those who want to understand, just seem unable to. It's worse when you're dealing with health professionals who just don't listen or simply dismiss you & those experiences.
This topic is of special interest to me since I deal with multiple food intolerances/sensitivities. (And other substances as well-- try creating a fragrance-controlled environment in a society teeming wiith fashionable scents, and chemical odours). Reading all the comments about the link between periods & hormonal changes and sz activity, makes me believe that had somethinfg to do with the presence and frequency of certain types of szs I experienced years ago. I'll continue to be vigilant about what i put in & on my body, and surround myself with in the immediate environment that i do have some control over.
Peace & Harmony!
Hi,
The triggers I have gotten have changed through the years. When I was in grade school, it was usually a certain taste or smell that triggered seizures. Now, with my seizures changing over the years it's usually colors or things I see that trigger seizures. I noticed that sometimes print will bring on seizures and also when I do a lot of beadwork after awhile, it seems like it's just too much stimulation to take in. As a whole it seems like when there is too much I see to take in or colors. I also get them by stop lights and in the winter if I'm walking the brightness of the snow triggers some. One other kind of feeling I get with auras but not all the time is a jumpiness kind of feeling where I have to quick go into another room away from everyone or thing, and close the door. It sounds more like a panic attack but a seizure follows it, or at least a start of one. I have the vns implant also, so the magnet sometimes will stop them.
Hi,
I often have that same feeling of needing to get away. I just figured it was because of the embarassment that I feel about my epilepsy, I didn't think it had to do with the actual disease. I haven't been sleeping well lately, having almost constant headaches, and I do feel a lot of anxiety. I have an appointment coming up in about a week so it is good to know that many of this things could be the cause of, and not the effect from my seizures. You have all been a great help.
prosessed foods caffine sugar a lot of carbs at a time
I was diagnosed about 1.5 years ago and this last winter I got really sick(cold) and the tylenol cold doesnt seem to cause any episodes. But i also have horrible daily headaches and my doctor prescribed a nasal spray for migraines and it caused really bad episode were I was hearing voices. Not fun... So since then I do not mess with any meds unless I have consulted my epilepsy dr. I strongly suggest seeing a epilepsy specialist not just a neuroligist. PS I tried topamax and it did help with the seizures just the migraines and deja vu feeling. hope this helps!!!!
Flashing lights menstrual cycle are definitly triggers for women not all women have the same triggers but the menstral cycle was a big one for me and for the longest time I could not figure out why every time I had my period I would have a seizure It got to the point I had to have a hysterectomy it was so badand with the over the counter meds you have to be very careful what you take it depends on what you took.
Yes, the flashing red lights do it to me also. For me, the flashing red lights are a little slower than a blinking street light, but when I have an EEG, they use fast blinking lights. I have already gone through meno., but before hand, I would have them before each period. Other triggers are excitment, worry, fear, cafine, low energy (lack of sleep). I have at least 4 sz each month now and before meno. I had one each month.
I know how you feel. I can not take any kid of over the counter drugs they case me to have a seizure.So the colds season I have to be extra careful around people. As well I did have seizures the first couple of days of period but my doctor up my meds and it seems to me working so far.
Some medicines do cause seizures! Since you've been diagnosed with E have you noticed seizure activity close to your time of the month? AED's and Epilepsy affect hormones!
Yes Actually it is close to my month now.. have about 9 days b4 it should start and i'm starting to have migraines and the shooting electric like pain in my head now for a few days.. and ya i had one seizure on the last day of my period and then three days ago i had one also.. thats the only two seizures i have had since i've been on my AED's and my first seizures happend also around my period time(a week b4) but i'm not sure if it was my period or the pills i took(panadol,fluetab) that triggerd them