SEIZURES AND ALLERGIES ?
Prepared by Sarah J. Blake
The first time I thought about the relationship of seizures to allergies was in December 1995. I had had what were thought to be possible absence seizures when I was in high school. I ended up with a diagnosis of stress. After that I did not tell anyone about the confusion, disorientation, and blanking out. Only a few people ever noticed a difference during one day when I was feeling this way. Most of the time no one noticed or seemed to care.In November, 1995, I began having these strange feelings more often. Usually I just felt like a light went out inside my head, similar to the way the lights go out briefly during a storm. However, there were a few times when I had other symptoms as well. I began to wonder if they were linked to food allergies, particularly certain types of chocolate.Following are some letters I wrote about my experiences. I do not know what I ate in December that contained chocolate. I wondered if it contained syrup or cocoa powder. I began watching my eating patterns in February, 1996, and have noticed a definite difference in my reactions to syrup and cocoa. In addition, I have had reactions to foods not containing chocolate at all, which has reinforced my feelings about which ingredient is causing the problem.As of today, I have been able to link my seizure-like symptoms to both diet and stress. I experience the symptoms after eating certain foods, when I am overly tired, when I have gone too long without eating, and when I am emotionally upset. Depakote has helped at times, but not always. I went for a time without taking Depakote to see if I could use diet and other lifestyle changes to control these episodes. However, I am now back on Depakote for another reason.Another surprising discovery I have made is that the foods I eat seem to interact with one another so that even the order in which I eat them can have an impact on my events. If I eat proteins and vegetables before having anything containing the offending ingredients, I tend to have fewer if any events.I have also included, with permission, information from another member of the old epilepsy list who suspects that allergies may contribute to her daughter’s seizure activity.My letters follow:
December 5, 1995
Note: This letter was written immediately following two episodes. I wrote part of it after the first and part of it after the second.
I feel like I am rocking back and forth, like I am on a wiggly bridge. It won’t stop. No one is shaking the bed. Why does it feel shaky?My muscles are weak. It starts in my fingers. My typing isn’t too good. I make a lot of mistakes and don’t catch them. I can’t push the keys very hard. The left side of my head feels jumpy. The right side does too, but not as much as the left.Maybe it is the chocolate. Chocolate has never done this before. Maybe I shouldn’t eat chocolate for a while.Maybe lying down will help. I am falling asleep. No, not asleep. I am in a trance, disoriented. I cannot move. Suddenly I am startled. What happened? What was I thinking about? I don’t know. I am not tired. Was I asleep? My mind is still jumpy. My muscles are still weak, but not quite as weak. I am so scared! I have had a panic attack before. It was not like this. My heart raced. I could think straight. I had a cold feeling in my fingers. In this state I cannot think right. Why is the TV on? Why am I in bed? Did I go to class? What time is it? What day is it? The time on my watch does not look right. 3:00 looks like 9:00. 7:00 looks like 11:00. Where is everyone else? Why am I getting up walking around? I don’t know what I’m doing. I cannot go back to sleep now.
I don’t feel like typing any more. I wanted to send a letter.Kyle is making some vegetables. I want vegetables and meat. I hope he can find everything to put in them. I don’t have enough energy to get up and cook. I am lying on the bed. I’m getting too weak to type again.I talked to Flower earlier. Her name isn’t Flower, but that is what my mind says. I talked to her, and she was sleepy. I’m not sleepy. She is. Why am I calling her Flower? Her name is something else. Terri. She’s in the hospital.Now I am fully alert again. This looks so strange to read. Am I going crazy. Am I just falling asleep and having weird dreams? What is wrong with me?
February 24, 1996
I am wondering about the relationship of seizures to allergies. I am allergic to coffee beans, and I have noticed that when I drink too much coffee in one sitting I feel really shaky and lightheaded, and I start spacing out. I’ve had the spacing out stuff for a while, and Depakote helped it (except when I drink coffee, of course). I’ve never had a grand mal seizure, but when I talked about this with Terri she said that is how she feels before them. I know it is not the caffeine because even decaffeinated coffee does this to me. I also become very sleepy. When I have the opportunity to lie down, I usually sleep for a couple of hours. I’ve done this after some of my blank-outs.Of course, wouldn’t you know, my EEG is normal.
February 27, 1996
I went to eat at the Golden Corral last night, and I had a great time! I ate off the buffet and had chicken-fried steak. I had a couple of little tiny brownies and a chocolate chip cookie. I also ate some frozen yogurt with chocolate on top.Later on in the night I had a whole bunch of blank-outs all in a row. Terri could tell by the way I was talking. The other weird thing that happened was that my whole body started rocking back and forth really fast, barely enough to notice. It made me really dizzy, and my legs were really stiff. I guess it was a seizure–it felt similar to the one I had after the coffee.Today I called the two restaurants to find out the ingredients of what I had. Hershey’s chocolate syrup was in the coffee mix I had a few weeks ago, and Nestle’s was in the yogurt last night. I called the grocery store and had the ingredients read to me. The only thing I found to be suspicious of is something called xantheum gum. I did a little research, and apparently xantheum is a weed similar to soy. The nurse at my allergist’s office says it is used in ice cream and coffees that are not all- natural.I eat chocolate, to which I am also allergic, often enough to know that it wasn’t what caused the problem. I also drank some regular coffee this weekend without any problem. Marsha said she didn’t know if the allergy clinic tests for xantheum. It doesn’t show up on my chart. There were three other gums, though, and I had reactions to all of them.
March 30, 1996
I went to Houston this weekend for a bridal shower. (I got married on March 9.) They had a yellow cake with whipped cream icing, which is my favorite. No chocolate.After the shower I went back to my parents’ house and eventually fell asleep after about 30 minutes of feeling lethargic and disoriented. My mom kept saying that I was asleep, and I had a very difficult time talking. It was not as bad as the other times. But we had cake left, so she read me the ingredients. It had xantheum gum in it.I never have this problem when I bake for myself using standard ingredients like sugar, salt, cocoa, etc. I am pretty well convinced that the gum is the problem. My dad has a book that tells what diferent things are used for, so he looked it up. It is used as a thickener, so I am sure I can expect to find it in syrups and candies and probably in whipped cream.I felt too stupid to go to the neurologist on Thursday like I was supposed to do. I have five normal EEG’s. My sister works for a neurologist, so I thought that maybe she could ask him about the allergies. Instead, I guess I will get all my EEG’s rounded up, if I can even find all of the places that did them, and just feel stupid and go anyway. It seems I am not always going to know when I will encounter this, unless I start reading ingredients constantly. I don’t know if something like Depakote would help for all the blank-outs, but it helps with some. Terri has an extra bottle, which I have borrowed sort of. Ok, she gave it to me.
Tracey’s letters follow:
February 25, 1996
Subject: relationship between seizures and allergiesFor the first time since our daughter was diagnosed we feel that we may be getting somewhere with trying to establish WHY.We are looking into MEDLINE, however, you seem to have to be an authorised user of this service (any hints anyone ?).We have never given our daughter any artificial sweeteners and her diet is relatively sugar free, due to her natural dislike of most sweets, cakes and biscuits (aren’t we lucky !).We approached this mailing list as we feel an allergy, or allergies are the only explanation as to why the seizures occur.
Our daughter is 4.5 years old, diagnosed as epileptic last September, after 5 major seizures.
2 to 4 hours petit-mal, followed by a grand-mal (3 of which were in 1 night )- witnessed by various hospitals ,and finally sleeping for hours and hours.
Common Denominators :
1. A Sunday (i.e relaxed atmosphere etc)2. Two out of three a roast lunch (gravy – has caramel E150 in its ingredients)3. Two out of three occasions she has tried Coca-Cola for the first time in her life (Caramel E150 used as colouring).4. The other occasion she has eaten choc pudding with choc custard (Caramel E150 based)The main reason we feel we may have stumbled on something, is that last week she was prescribed Tixylix for recurrent catarrh, which lists among its ingredients caramel (E150 !) her behaviour became agressive, hyperactive, a rash appeared on her face and her left eye watered (2 seizures have been down the LHS of her body). We felt that she was working her way up to a major seizure (she didn’t – but this may be because she seems controlled on Epilim even if it is early days).Out of context our daughter has suffered for 2 1/2 years from a near constant cough during the winter months; unexplained rashes on her face and in the creases of her forearms; watering eyes and many earaches. All of which the G.P has put down to Catarrh.
April 1, 1996
We have had her tested re a vega machine for any allergy,intolerance,sensitivity to food & other pollutants in life.This had surprising results. She is allergic to several foods & bingo on the E150 caramel theory.She has a very low tolerance/allergic reaction to this particular additive also to other additives to which she has consumed on the “seizure days”. Our next step is to ‘convince’ our consultant to test mainstream in order to clarify & add weight to our findings.This is because, at the end of the day, a vega machine is still looked upon as an “alternative” way of testing allergies.
Sarah J. Blake is not a medical professional, and information on this sight should not take the place of face-to-face consultation with medical professionals. The goal of this site is to help people educate themselves about epilepsy and various treatments and alternatives and thus facilitate good communication between patients and doctore.
JL TAMAN BENDUNGAN ASAHAN 5 JAKARTA PUSAT, JAKARTA INDONESIA 10210
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