Coffee/Tea/Caffeine

[Army Vet]

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]

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]

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]

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

 

[Clovis]

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]

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]

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]

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]

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.

 

[Matthew74]

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.

 

[suebear]

I have two cups of coffee every morning then will go right into drinking bottled water for the rest of the day. As of 2022 I stopped using sugar in the morning, literally. Sugar can't be avoided in the entire diet so my husband and I began a healthy diet to put the modification on many things.

I began feeling more healthy when starting to add more fruit and fresh vegetables along with dropping the sugar from the diet. I've got specialists that follow me and are always saying that I am doing well with my eating habits. Have different cooking habits that are more using the grill or the oven than the frying pan. Had been given some resources from the hospital staff which was a helpful thing. My husband is also a cook so that is a huge benefit.

If you honestly want to drop the caffeine, I would have your specialist walk you through on how to do it as every person is going to have a different effect to this. Best of luck to you!

 

[Sabbo]

I drink a lot of water--plain & sparkling. I often drink my lunch, too. I make a smoothie using nonfat yogurt, milk, & frozen fruit, including flaxseed & protein powder.
I've been eating healthy since I went to the community college by my parent's house. I used that time to lose weight--and lost close to 50 pounds. My starting weight was close to my full-term weight when I was pregnant with my older son!!

 

[suebear]

sorry can't do the protein drink, I tried it once before but just can't do it. I keep up with the water for hydration which is about as good as I can get. My husband and I aren't doing anything as a diet. Due to his health factor being Type 2 Diabetic all sugar is removed from the house so that gave me an idea of kicking all sugar from my diet or at least trying to. I went cold turkey so morning coffee black with a small amount of skim milk as it has a slight bit of sugar taste to it. I go straight to enhanced water afterward.

We have been eating healthy which I feel is wonderful. My husband creates healthy dinners for the both of us since he use to be a cook so I am very spoiled. Every so often I will have that desire for wanting sugar then will go after the diet zero of something to take care of me then I am okay.

I'm doing some cardio to give my lower back relief along along with slowly drop the weight. I'm not intentionally on a diet, just doing little things to curve my weight and help my husband's health in the end.

 

[Sabbo]

Cooking, especially Pakistani food, was one of my interests growing up. Learning from my mother was difficult because she didn't follow any recipes. When I went to Pakistan a couple times, I asked my aunt (her sister) for recipes--she used to hold cooking classes in her house & was well- known all over the country. Unfortunately, she passed away a few years ago due to Covid, just months before she would have come to visit us. One of her granddaughters recently published a book with many of her popular recipes, which I have a copy of. The handwritten ones I have, though, are priceless.
I enjoyed cooking a lot UNTIL the complex partials began. These seizures have made me give it up as a hobby since I can only cook if somebody is at home & knows I'm standing at the stove cooking.

 

[Bernard]

My wife cannot tolerate caffeine at all. She's so sensitive that she has to avoid chocolate - even dark chocolate that usually has less sugar.

 

[No-brainer]

I rarely drink more than a pot of coffee per day. (I'm exaggerating a little.)
I have never had any problems between my high caffeine intake and epilepsy, but I am concerned that maybe I am washing the expensive drugs out of my system.
I don't care for sweet drinks at all, hot or cold.