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Aspartame and Seizures
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dansingrhyme12 posted:
I'm a recovering alcoholic who had been sober for almost six years now. My alcoholism lead to seizures toward the end of my abuse. I was put on Dilantin in order to control my seizures which only occurred when I was sleep deprived or dehydrated from illnesses like a cold or the flu.


Two years ago, my seizures started happening about every six to eight months. I was still talking my medication and I wasn't sure what the problem was. I had a seizure six months ago, and my doctor was all prepared to change my medication. I didn't want to switch medicines. There were too many side effects from the other drugs and the cost of the other medications was outrageous. I wanted to know why this was happening to me when even my own doctor wasn't sure.


I did some investigating. I monitored my diet, and I realized that I was drinking a lot of diet soda. Diet soda that contains phenylalanine ( an ingredient in aspartame) has a warning label on the bottle in bold letters- PHENYLKETONURICS: CONTAINS PHENYLALANINE. I did further investigation and read several stories of individuals that couldn't tolerate phenylalanine. The number of individuals who were allergic to this ingredient was astounding. I found myself questioning if this was indeed the problem. I stopped drinking and eating anything that contained aspartame. The changes in my health were noticeable within a week.


I slept better, I felt calmer during the day and I could remember (and retain) information again. For the longest time, I kept thinking that my drinking in the past was the cause for my short-term memory loss. Apparently, that wasn't it at all. It was the aspartame.


I continued abstaining from what was "messing with my head." I drank diet soda that contained "sucralose" and I read labels on everything I consumed. I haven't had any episodes with "auras" or seizures since the day I quit consuming aspartame. I feel "safer" and so relieved now that I found out what the culprit was... And I didn't even have to go to "med school!"

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Has anyone who has been diagnosed with a seizure disorder (i.e. epilepsy) discovered that they are allergic to aspartame, or have a strange feeling after drinking or products containing the sweetener?
  • Yes, I have seizures after ingesting aspartame
  • Sometimes I have an "aura" after ingesting aspartame..
  • I have a different allergic reacion to aspartame (i.e. hives)
  • I have no allergic reaction to aspartame.
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dancer86442 responded:
Although Alcohol Can be partially to blame, aspartame is indeed a wicked trigger for seizures &/or memory loss. The Info about aspartame has been around for Yrs, yet, few people, including DRS, know or care about the side effects. My friend, who was a medical journalist created her own site a few yrs ago & featured aspartame in one of her articles. http://www.epilepsytalk.com/ Use her Search Tool located in the Menu to find the article.

Now that you have 'found' the culprit , will you ask your DR to Wean you off your medication? If seizures re-occur after 6 weeks of being off your med you can always go back on it.

I don't eat or drink anything w/ artificial sweeteners. So, I don't know if it would affect me. But, if you use our Community Search Tool, you should find others' who Have had this problem. Although there is no way to connect to them. Just thought you may want to read what others' have said.

Thank You for joining our Community. I Hope you will continue to share. Plus, ask questions, comment or vent at any time.
Know we Care. Happy Holidays!

BTW: Congrats on being 6 yrs Alcohol Free! Now, let's Hope you can continue being Seizure-free for that long & Longer!

Love Candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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saxofone1 responded:
Hi Dan,

Welcome to the group. Also, a strong high-five regarding your overcoming the alcohol situation.

I haven't noticed any problems with aspartame. Probably didn't think about it. I do drink a lot of the bottled teas but have had no problems with that. We are all different.

Glad to hear that you have found that culprit was causing you discomfort.

Years ago(early 80s I think), I noticed a problem with my seizures when my intake of sugar was high. You know the fun stuff, i.e. candy, ice cream, soda, etc. My psychiatrist suggested I substiute many of the foods for healthier choicse. Yougurt stead of ice cream, waters instead of sodas, etc. I noticed a decrease in my seizures. I still follow that diet today. Well, most of it any way. I must have a Frap or a Whopper to settle some cravings.

Stay with us. New voices and new thoughts bring new info. Hpe your holidays are going well.

angie
 
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dansingrhyme12 replied to dancer86442's response:
Hi Candi,


Thank you so much for you input. You're so helpful in guiding others to recognize their symptoms and triggers. This is vital for all of us who know how terrifying a seizure can be- not only to ourselves, but to those around us. Your comments were much appreciated:)


Thank you also for the congratulations (on my sobriety.) I think if all of us work together to help one another with our health issues, rather than try to be our own MD, we can benefit greatly.


Happy Holidays, Candi and best wishes for a healthy and happy 2014!




Sincerely,
Leslie
 
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dansingrhyme12 replied to saxofone1's response:
Hi Angie,


Thank you for the "congrats!" It's a long, hard road to sobriety, but when you have the right people in your life and you want to accept help, it can be done:)


You're right about us all "being different." I tried to explain this to a few doctors that just wouldn't accept that. Their medical books hadn't taught them that seizures are very individualized. I knew a woman who couldn't eat anything made with canned tomatoes. She could eat fresh tomatoes, just not canned. Now, obviously she was allergic to something in the canning process- most likely a preservative used for the tomatoes. It's interesting that sugar was giving you a problem. I'm glad that isn't my issue because I love sweets. I used to also love Diet Coke and Pepsi. We all have to make sacrifices to stay healthy I guess.


At any rate, I wanted to thank you for your kind input and wish you all the best for the holidays. Have a happy and healthy 2014, Angie!




Sincerely,
Leslie
 
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dancer86442 replied to dansingrhyme12's response:
Leslie, Thank You so much for your Kind Words! I have been w/ this group for over 20 yrs. I guess, I Should know what to say & how to Help, by now. Everyone who Shares their Epilepsy Journey w/ me & the community are Special. In my Opinion!

As for being our own MD: 20 yrs ago, I had to be my own MD. My Drs either talked over my Head or neglected to tell me anything about my Disorder. I Thought I was 'cured' after 6 weeks on Dilantin & Quit taking my med. A Yr later I awoke under my GF's bathroom sink w/ blood all over my face & hands from hitting the tub or exposed pipes. That was enough for me to seek help again. But, Still, no DR would explain what was happening. 10 yrs later & many 'trial & error' meds I finally had seizure control. 5yrs after that, I wanted to try a new med & I joined this Community & the people that were here then, encouraged me to do my 'homework'. I'm Still learning!

I do Hope you will continue to visit us & keep us Updated as to your progress. Feel free to ask questions, comment on other posts or Vent. We are All here to Help each other. I truly believe Support & Education is the Key to Coping w/ this Disorder.

Happy New Year! Your wish for me is what I wish for All those afflicted w/ Epilepsy. Hugs!

Love Candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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dansingrhyme12 replied to dancer86442's response:
Hi Candi,


You are most welcome! I'm so glad that I discovered this kind of support was available to those of us who suffer...

You're so right that each and every one of us has to come to grips with our condition and when we see gaps in what the doctors are telling us, we're left to be our own physicians! I'm so glad that I didn't listen to my doctor and change my medicine.

You must have been terrified when you had that seizure at your friend's home, Candi! After all, you thought you were safe and you weren't. Thank God we're a generation that questions the authority of our doctors and trusts our instincts to do what we believe is best for ourselves. You are so right when you say that, "support and education is the key to coping with this disorder."


Meeting you has been a pleasure and has given me a new sense of freedom. I can now discuss my disorder with those who understand this condition. Thank you so very much and Happy New Year to you also!


Sincerely,
Leslie
 
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dancer86442 replied to dansingrhyme12's response:
Hi Leslie,

Believe it or not, it Didn't Scare me. It just 'woke me up'. I'm not sure, but, I think I was Raised not to Fear seizures. Mine may have been in remission, but, Little Sisters' weren't. But, I have very Little Recall of growing up &/or interacting w/ my Family. I Do Recall being told we couldn't play w/ our Cousin, one day. He had had an absence seizure. So, we stayed away. It was the Only one he ever had. So he says, now.

I've been on my meds for 25 yrs. Seizure free or so I thought. I changed meds when my son was 5. I was Tired of sleeping/napping. I Loved the new med. I felt 'energized'. 3 Mths Later, the med (felbatol) was Recalled, due to Bone Cancer side effects. It was only going to be used on people w/ hundreds of seizures a day. I decided to do some 'homework' & came across this community Yrs later, Researchers discovered it was a Rare side effect & now, DRs are dispensing, again.

Several yrs ago, after I developed COPD, I decided to change Neuros. They had visited me while I was in the hospital, at my request. I went in for a consultation & the Neuro & a PCP, wanted me to get off my meds. Why? Becuz, they are addictive. Welll, duhhhh! You are addicted to Anything you take on a daily Basis. At least, that is the way I saw it. My Phenobarbital is also a Horse sedative. I take the strongest dose, available. And, I decided " if it ain't broke, I ain't fixing it." Sure I Still have to take daily Naps. Unless, someone comes & Distracts me w/ a shopping spree or IF I had a Job. Anyway, I went back to my previous Neuro & he scheduled me an appt w/ his PA. I Finally met a Neuro who understood & talked My Language. Fresh out of Neuro school, she knew more than any other DRS I had seen. Plus, she agreed w/ me. But, now, I wonder 'what if'. Because This med has been Proven to cause Mood swings. ( I lost a Job due to a mood swing. ) Plus, I now have a New side Effect: borderline osteoporosis. But, I Think this was due to being on 2 meds that have that side effect. I was only on Advair for 5 yrs. But, my bones were Healthy B4 I started it. Anyway,There are so many New therapies/treatments. I like the thought of Medical Marijuana. I haven't seen my neuro in over 5 yrs. I think it's time I talked to Her. I quit seeing her, becuz, she neglected to tell me that the results of my Portable EEG meant seizure activity. A Rare type. Mainly found in children. Well, mine did start as a babe/toddler. So, who Knows??? Maybe I have had this Wavy Line Epilepsy Syndrome All my Life. These are silent seizures, w/ No activity, that occur while I sleep. ) She didn't even suggest that I mite need a New treatment.

OK, you've caught me Ramblin. There is a Lot to My Journey & I don't want to overwhelm you.

I am Glad you found us, too. You are Now a Member of my Epi Family. I am Happy that you feel Less Alone, now. I truly do Understand. And I am Still 'paying it forward' to those who talked to me, way back when. HUGS!

Love Candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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saxofone1 replied to dansingrhyme12's response:
Hi Leslie,

You're welcome for your "thank you". I, along with the Candi/others fully understand how the right people(family, friends, doctors, teachers, etc) can be a positive influence in how we handle hard situations.

I had a college professor back in the early 80s who didn't want to give me an incomplete for a math course. He asked me mom if he could stop by after his day was through so that I could finish the course. He didn't want me to lose any of the learned lessons over the course of the year that I would have to complete the course. I will always be grateful for his support. I've tried many times to find him but have unfortunately been unsuccessful.

I found another support team with kids when I started volunteering with a kindergarten class in the mid-80s. I was on a medically requested LOA from college and needed something to fill my time. The kids in my first class had no problems with my ep. Many wanted to know why and if the seizures hurt. I told them a simple story relating seizures to a blackout when all the lights go off. They liked the story and were very protective of me afterwards.

Working with kids has become my career. When I moved to Mpls to rejoin my parents(another story), I was soon hired by the school district. I loved it. My last five years in Mpls were spent as a volunteer worker at a school I had once worked at.

I became a volunteer again when after my brain lobectomy in '02, I couldn't find a school within my transpotation range that would give me enough hours for full medical coverage.

I moved to the Vegas Valley with my parents in 07. I finally found a school who jumped at the chance to have a daily volunteer. Many people have noticed a strong change in my spirit since I've been back with the kids.

I think my jump in spirit aslo has to do with gettin a place of my own in Henderson, a border city of Vegas.

Now, I'm rambling like Candi. It is very easy to do when you can share with people who understand and don't judge.

Be safe tonight and always.

angie
 
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hawiian_girl11 responded:
Aloha,

YOu know if you were truly allergic to and I am not aying your not, but if you were you would be having szs multiple times a day every day.

THey put aspartame in just about EVERYTHING you drink thses days and even in some foods.

nancy


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