KP2002
10-28-2003, 08:09 PM
My son has had several seizures three of which resulted in status epilepticus. As a result of diligent observation, I have found red dye 40, cinnamon and/or orange/tangerine juice to be contributing factors, if not the cause of each. PLEASE diligently observe yourself and your food choices. The medical/science industry is still trying to figure out the mysteries of epilepsy. Anyone who is affected by epilepsy is of most value in solving these mysteries. I am most interested in any and all observations. Thank you!!! Wyatt's Mom
Sponsor
mommajessibelle
10-28-2003, 08:30 PM
i dont know if there is a connection or not but every time i eat tangerines i have a seizure so i just dont eat them any more but i still have seizures every once in a while know what i mean
------------------
mother of 3
ages 4,3,and 1
my pride and joy
diagnosed with epilepsy jan. of 97
live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow
------------------
mother of 3
ages 4,3,and 1
my pride and joy
diagnosed with epilepsy jan. of 97
live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow
KP2002
10-31-2003, 07:19 PM
Thank you VERY much for your response!
amydianne1
11-06-2003, 01:23 PM
Thanks so much for the topic, it's amazing the things that can trigger seizures.
I appreciate providing the info to us!
Hugs,
Amy
I appreciate providing the info to us!
Hugs,
Amy
KP2002
11-12-2003, 08:17 PM
Thanks Amy for your support.
It took me a few times to get onto this newly designed board. I find it cumbersome; too many fancy options/bits of information that really have nothing to do with the point of these boards which is easy, clear communication between people who have something in common; people looking for support and solutions regarding epilepsy. Anyway, thanks again for your response. I do have every intention of following-up with scientific research regarding food-related seizures.
It took me a few times to get onto this newly designed board. I find it cumbersome; too many fancy options/bits of information that really have nothing to do with the point of these boards which is easy, clear communication between people who have something in common; people looking for support and solutions regarding epilepsy. Anyway, thanks again for your response. I do have every intention of following-up with scientific research regarding food-related seizures.
KP2002
11-16-2003, 07:23 PM
I'm adding kiwi to the list of suspect foods. Anyone out there who may think kiwi is contributing to the onset their seizures? My son had two yogurt drinks with kiwi Friday evening and woke up with five successive primary focal seizures (even with an increase in his evening meds just one week ago). Please keep me posted. Thanks!
bruised
11-16-2003, 11:17 PM
Citrus???Aren't citrus foods triggers?
KP2002
11-17-2003, 12:17 PM
I only am aware that grapefruit/juice is a trigger because of its effects on the liver enzymes that function in the metabolism of anticonvulsant meds. Anyone who has been informed by their neuro or through research that all citrus fruits are triggers for seizures? Thanks for your reply.
bruised
11-17-2003, 07:38 PM
Another trigger for my brother is sitting at the computer for a long amount of time,flashing lights whether it be strobe lights or ambulance,firetruck or police lights,video games which need concentration also.Loud boom boxes also trigger and no sleep.These are some we have noticed.Oh,and not eating proper foods like veggies and fruits in the diet,and caffiene products as well like coke,but only is large consumptions.I no it's not only food triggers but I hope some of these help?
KP2002
11-17-2003, 07:50 PM
Dear Bruised,
Yes indeed! I have found that certain foods which trigger seizures are generally consumed in large amounts a couple of days previous to the seizures' occurance. Perhaps this could be because it takes a couple of days (through digestion, absorbtion and metabolism) for the assaulting food to affect the brain. It is still such a mystery yet with diligent record-keeping and co-seizure friends' input perhaps there are answers waiting in the wings. I hope so. Thanks so much for your great inpurt. p.s. I have heard of photosensitive seizures but have confirmed that my son is not reactive in that regard so I am unable to contribute, in any way, to your sharing in that regard. THX again.
Yes indeed! I have found that certain foods which trigger seizures are generally consumed in large amounts a couple of days previous to the seizures' occurance. Perhaps this could be because it takes a couple of days (through digestion, absorbtion and metabolism) for the assaulting food to affect the brain. It is still such a mystery yet with diligent record-keeping and co-seizure friends' input perhaps there are answers waiting in the wings. I hope so. Thanks so much for your great inpurt. p.s. I have heard of photosensitive seizures but have confirmed that my son is not reactive in that regard so I am unable to contribute, in any way, to your sharing in that regard. THX again.
bruised
11-18-2003, 02:47 AM
I thought of something else!My brother does this thing with his lips alot of the time,like as if they're itchy and he is unware that he does this.I think it's classified as petit mal?If I actually watch what he does,it's not normal everyday things a person does.
Keraly
01-08-2008, 12:20 AM
You're naming off certain foods that you notice as having triggered seizures, but do you think it might be possible that certain people have seizures as allergic reaction in general? Just as some people may have a rash, some may get an itchy, runny nose, and others may have intestinal reactions or asthma, might seizures be another type of allergic reaction for some? In this case...it would follow that there may be some things that tend to trigger many people (red dye, possibly Aspartame...) as there are typical serious allergens with annaphylactic (sp?) shock as their reaction (bee stings, peanuts, sea food). In this way, your son could be having seizures in response to the "common" offenders, such as; red dye or Phenalalynine (removed from Dymatap for causing seizures in some children), AND he also could have his own particular allergies to cinnamon and orange juice and kiwi, as my son has allergies to rag weed, milk, cats, etc. Does this make sense? In this way, your keeping a diary or even trying a restrictive diet where you start with small variety and slowly add in one thing for a few days might help, just as your acute observation is helping! I also might add that things aren't always what they seem, as I'm sure you know. Some foods may not literally cause the seizures just by their presence, but may instead be robbing your son of other nutrients or rendering them useless -- much like what grapefruit does to weaken antibiotics. It is a complex subject. I have been doing a lot of study on essential fatty acids and the role they may play in helping PREVENT seizures! This makes a lot of sense to me, because my son's diet is so incomplete. There's no way he naturally gets the EFA's he needs in HIS diet. I think our answer may lie somewhere in the middle of taking away certain offenders and adding in helping elements, and may (frustratingly) be very individualized. May your efforts pay off in the blessing of better health and knowledge for you and your son. A very dear friend of mine once eased my shocked and troubled mind when our youngest was suddenly diagnosed with Type I Diabetes by saying, "Knowledge is power". It is also peace.
Warmly, Concerned Mom of a boy who MAY have epilepsy
Warmly, Concerned Mom of a boy who MAY have epilepsy
Zagmazmatron
01-08-2008, 03:17 AM
I have noticed that sometimes eating Chinese food I feel like my head is out of sorts and I eventually lose consciousness. Whether I seize or not I don't know, because I make every effort to lay down in time, but I have thought maybe MSG is a trigger for me.
Does anyone know if there are varying levels of grand mal seizures? I have had every test under the sun run on me, and all have turned up normal enough to keep doctors scratching their heads. I am labeled an epileptic to keep me from getting my license, but I am not photo-sensitive, and common triggers do not affect me.
Also, I have heard that it is not possible to grow out of a seizure disorder or prevent one from occuring once the proverbial ball is rolling, but in the past year and a half, I have had many occurences of feeling a warning sign, then biting my lip or ringing my hands to keep conscious, and it will pass by. It frustrates me because of the emotional grief it puts me (and my family, mostly) under, knowing I have this disorder but not knowing if I am still afflicted by it.
Does anyone know if there are varying levels of grand mal seizures? I have had every test under the sun run on me, and all have turned up normal enough to keep doctors scratching their heads. I am labeled an epileptic to keep me from getting my license, but I am not photo-sensitive, and common triggers do not affect me.
Also, I have heard that it is not possible to grow out of a seizure disorder or prevent one from occuring once the proverbial ball is rolling, but in the past year and a half, I have had many occurences of feeling a warning sign, then biting my lip or ringing my hands to keep conscious, and it will pass by. It frustrates me because of the emotional grief it puts me (and my family, mostly) under, knowing I have this disorder but not knowing if I am still afflicted by it.
SentenceDoing
01-09-2008, 05:37 PM
Zagmazmatron,
MSG suddenly has begun to trigger migraines for me. I had two migraines in one week (I usually only get a couple of them per year), and the first one my brother suggested could have been from MSG in the Chinese food I had for dinner, and then when I had the next one a few days later, it turns out there was MSG in the canned soup I had for dinner. I know sometimes migraines have seizure-like symptoms, with the auras and all (which I actually don't get before a migraine). So maybe your spell was a migraine from the MSG.
Also, I was told that you can grow out of childhood epilepsy. A lot of kids who get epilepsy before they go through puberty can grow out of the epilepsy. But my seizures started when I was about 12, during puberty, so my doctors told me I would probably not grow out of them, which I haven't. I'm 25 now.
MSG suddenly has begun to trigger migraines for me. I had two migraines in one week (I usually only get a couple of them per year), and the first one my brother suggested could have been from MSG in the Chinese food I had for dinner, and then when I had the next one a few days later, it turns out there was MSG in the canned soup I had for dinner. I know sometimes migraines have seizure-like symptoms, with the auras and all (which I actually don't get before a migraine). So maybe your spell was a migraine from the MSG.
Also, I was told that you can grow out of childhood epilepsy. A lot of kids who get epilepsy before they go through puberty can grow out of the epilepsy. But my seizures started when I was about 12, during puberty, so my doctors told me I would probably not grow out of them, which I haven't. I'm 25 now.
Sherri5186
01-09-2008, 06:56 PM
Hi, As Keraly said,aspartame has been know to cause seizures.
Years ago I use to drink diet sodas and had that problem,
so it may not be the caffeine if he is drinking only diet drinks,
but,then again alot of diet sodas now have splenda in them.
If he is drink diet sodas,I would definitely check and see if it
has the aspartame in them.Good-luck,Sherri
Years ago I use to drink diet sodas and had that problem,
so it may not be the caffeine if he is drinking only diet drinks,
but,then again alot of diet sodas now have splenda in them.
If he is drink diet sodas,I would definitely check and see if it
has the aspartame in them.Good-luck,Sherri
Zagmazmatron
01-10-2008, 01:41 PM
Also, I was told that you can grow out of childhood epilepsy. A lot of kids who get epilepsy before they go through puberty can grow out of the epilepsy. But my seizures started when I was about 12, during puberty, so my doctors told me I would probably not grow out of them, which I haven't. I'm 25 now.
I have also heard about childhood epilepsy and growing out of it, but I had my first when I was 14 and 6'3", so I think I can rule that out too. As I tried describing to my mom (who suffers more than I do, having to live with the fear of the unknown), I just do not feel the way I did when I was having 10 or so seizures a year. I feel very in control of my body and mind, and in the few times I have begun to feel it coming on, simply lying down and concentrating on not having an episode is enough to keep me conscious. Which leads me to believe I was falsely diagnosed all those years ago.
I have also heard about childhood epilepsy and growing out of it, but I had my first when I was 14 and 6'3", so I think I can rule that out too. As I tried describing to my mom (who suffers more than I do, having to live with the fear of the unknown), I just do not feel the way I did when I was having 10 or so seizures a year. I feel very in control of my body and mind, and in the few times I have begun to feel it coming on, simply lying down and concentrating on not having an episode is enough to keep me conscious. Which leads me to believe I was falsely diagnosed all those years ago.
neurowreck
01-10-2008, 09:56 PM
Also note the difference between the company's coatings on medicatons....especially generic ones
(I use mostly generics, so this isn't anti-generics), if you can use them (not advised with Dilantin). I could take one form of generic Flexeril, but when the pharmacy changed vendors, and got some with the mustard yellow coating, I had terrible side effects (not necessarily seizures).....back to the white ones, and no problem. (obviously not on this for seizures).
(I use mostly generics, so this isn't anti-generics), if you can use them (not advised with Dilantin). I could take one form of generic Flexeril, but when the pharmacy changed vendors, and got some with the mustard yellow coating, I had terrible side effects (not necessarily seizures).....back to the white ones, and no problem. (obviously not on this for seizures).
Keraly
01-11-2008, 08:35 PM
Dear Zagmazmatron,
I had a friend who suddenly began having seizures after age 50! They were large seizures (don't know his medical details). He was medicated for about 4 years, then eased off of the meds. He was told that sometimes when they come on later in life (though you were not nearly as old as he), and seem to have no cause (tumor, head injury, ingestion of illegal drugs, etc.) they can sometimes disappear after the person takes meds for only a few years. Don't know if this helps you. How about the idea of "panic" attacks for you? If you have grown out of them, never been medicated (???) and can control them, perhaps it was a hormonal imbalance or nutritional deficiency you've since taken care of that temporarily caused these. In addition, have you had your heart checked for syncope? Hope you can soon find out and relax about what is going on.
I had a friend who suddenly began having seizures after age 50! They were large seizures (don't know his medical details). He was medicated for about 4 years, then eased off of the meds. He was told that sometimes when they come on later in life (though you were not nearly as old as he), and seem to have no cause (tumor, head injury, ingestion of illegal drugs, etc.) they can sometimes disappear after the person takes meds for only a few years. Don't know if this helps you. How about the idea of "panic" attacks for you? If you have grown out of them, never been medicated (???) and can control them, perhaps it was a hormonal imbalance or nutritional deficiency you've since taken care of that temporarily caused these. In addition, have you had your heart checked for syncope? Hope you can soon find out and relax about what is going on.
cavalier80
01-20-2008, 09:12 PM
zag..... most of the symptoms you are describing are happening to my fiance. The only thing is that we can't get him diagnosed. What do you recommend for him?
kp... i do believe that the comp. sometimes triggers some of my fiances symptoms.
when it first started with him he was on the comp. all the time. Now he is on it more and i've noticed it more.
kp... i do believe that the comp. sometimes triggers some of my fiances symptoms.
when it first started with him he was on the comp. all the time. Now he is on it more and i've noticed it more.
neurowreck
01-23-2008, 08:45 PM
Everyone's seizures are different, so yes, there can be different 'levels' of any type of seizure.
Interactions between different meds can also cause increased seizures, or side effects.
Artificial sweeteners (no matter what any 'official' reports say) effect me badly (aspartame and sucralose).
Food colorings - apo-carotenol (found in cheese spreads- but not every brand of the same type of spread) give me pre-anaphalactic symptoms (swelling, itching).
Interactions between different meds can also cause increased seizures, or side effects.
Artificial sweeteners (no matter what any 'official' reports say) effect me badly (aspartame and sucralose).
Food colorings - apo-carotenol (found in cheese spreads- but not every brand of the same type of spread) give me pre-anaphalactic symptoms (swelling, itching).