Coffee/Tea/Caffeine

Army Vet

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Hi everyone,

So I drink about two cups of coffee every morning. Also, I LOVE sweet tea (I'm a southern boy 😏). I got to thinking (ouch!) about the correlation between the two (ie caffeine and seizures). Seems like there more I look back, I can remember MANY times where I was at a restaurant with family and friends and had a big ole glass (or 2 or 3) of SWEET ICED TEA 🤔 and then ended up having a seizure (a few times within the restaurant itself!)... Hmmmm.... interesting.... 🤔 🧐

Well as the title of the thread suggests, I was curious if anyone else had any similar conclusions and/or experiences? I researched some of it online as best as I could, but had mixed reviews. Some said they "experimented" and BOOM! If they hadn't had any caffeine for awhile, they went without having any seizures. But then went right back to having some tea/coffee and BOOM! They magically reappeared... I seem to have anywhere from 2-4 seizures a month (that I know of). I have a cup or two of coffee every morning. SOMETIMES two and a half. However, I'm starting to really wonder about the tea I drink at restaurants. I'm "addicted" to it somewhat (especially when ordering something salty; good old salty-sweet combo). Therefore, when we go out, I easily have 3 glasses when I’m out. Between loving the taste and not having any until the next time out (sometimes a month, which in-turn causes me to drink more; just like a kid pigging out on candy when s/he finally is allowed (ie Halloween, Christmas etc)).

Thoughts?
 

Porkette

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Hi Army Vet,

Caffeine can trigger seizures for some people and depending on what type of sugar you use that can also lead to seizures for some people. My Epileptologist told me to have only 2 cups of coffee a day and I used to use Nutra Sweet (aspartame) and that would trigger seizures like crazy. Just like you I love iced tea or hot tea but that doesn't seem to bother me. If you are using any type of sugar with aspartame this could be what's really triggering the seizures. Also stay away from diet soda that can trigger seizures for some people also. Cut back to 1 cup of coffee a day
and see if that makes any difference. I wish you only the best of luck and May God Bless You!

Sue
 

valeriedl

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Caffeine is a pretty big seizure trigger for me. I can drink it but not a ton of it. I only drink decaff coffee. If you go to a fancy coffee shop, like Starbucks, they can make the drink decaff too. I'm usually ok with soda but I don't drink a ton of it. I stay away from drinks with a ton of caffeine in them like Mountain Dew or the energy drinks though. I don't have a problem with tea, but that's just me, some people might.
 

Loopy Lou

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Haven't really noticed a correlation if i'm honest, but caffeine is the sweet sweet nectar of life
 

Clovis

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I have had less bad seizures since I cut down on my caffeine, only two cups in the morning, no more though out the day. And I have noticed a drastic change in not onluy seizurres, but the way I feel in general since I stopped using anything with aspartame in it. For my coffee I just use a big of creamer or milk of we have it. No sugar or other sweetener.
 

Sabbo

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I drink on average 3-4 cups of tea a day, and it has no affect on my seizures. One or two cups are always green tea. The others are black tea with a little milk, no sweetener of any type.
 

sandinmyears

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I gave up Diet Coke last December. My simple partial seizures decreased significantly. I’m guessing it was the caffeine though some would argue that it’s the aspartame. I still drink Diet Rite, (no caffeine or aspartame).
 

Sabbo

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I rarely drink soda of any type. I used to (& sometimes still do) prefer diet simply to avoid the sugar, but it doesn't really matter to me. I like to drink sparkling flavored water more than soda.
 

Loopy Lou

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Haven't really noticed a correlation if i'm honest, but caffeine is the sweet sweet nectar of life
I came here to reply and then realised that past me had already posted this haha! I did cut out caffeine for a couple of months once to see if it made any difference, but for me it didn't. I don't do sugary drinks because they are just... awful. But do enjoy some pepsi max, yum.
 
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Matthew74

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I rarely have caffeine. Less than once a month, and then with food. If I ever have even a 1/4 cup of coffee 3 days in a row I have real problems. I grew up on iced tea, but no more (my epilepsy got bad as an adult). I find coffee is the worst. Try cutting out caffeine entirely (maybe not all at once...try cutting out coffee and soda first, then tea), and see how you feel after about a month without any caffeine.
 
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