Hello

[jackier]

Hello, everyone. This forum is great.
A little about me- I have had grand mal seizures since I was 12. I started out taking Phenobarb & Dilantin. Now, at age 50, I am taking the generic for dilantin-Phenytoin. I work out of my home, am married, and have two adult kids.
For most of my adult life, I haven't talked about my epilepsy. So I feel like I'm coming out of the dark about a lot of issues. Aspartame being a trigger! Wow-I never knew...
I usually just have one seizure a year, but since May of this year I've had 3.
This is what brings me to your awesome site. I suspected that the Large Iced Coffees I was drinking was triggering the seizures, and it looks like others are bothered by all the caffeine also. Sounds, like a no brainer-just don't drink them, but they are very good, to say the least.
Hope this has helped someone, I want to get back to reading other's posts now. Thanks for this site. see ya, Jackie

 

[Endless]

Hi, Jackie! Welcome to CWE!

I'm so glad you found us. Everybody in here is terrific, and has tons of knowlege. They pretty much saved me when I was first diagnosed, telling me all that stuff the doctors never do.

 

[Nakamova]

Hi Jackie, welcome!

If you don't already, I recommend that you keep a journal to see if you can identify any seizure triggers (in addition to the iced coffee). A journal can help with tracking meds and side effects too. I was on Dilantin for a while -- how's it working out for you?

Best,
Nakamova

 

[huskymom]

Hi Jackie!!

This is a fun place to visit on chat. On the occasion that you need advice or to vent, all is accepted here!:hello:

 

[Chel]

Iced coffee

I suspected that the Large Iced Coffees I was drinking was triggering the seizures

Hi Jackie

Welcome - I agree, these folks are great! I've only been here a week or two (am awaiting diagnosis after nearly a year of investigations, EEG two weeks ago), and I've had more help here than I could have read anywhere else from the medical profession.

Have you tried making your own iced coffee with decaf? I can't drink coffee at all, because it gives me heart palpitations, sweats, and I start climbing the walls, but love my decaf, and adore a decaf iced coffee... I admit I haven't had anything caffeinated or decaffeinated since discovering that Chai tea is one of my triggers (so have gone off all teas except peppermint and chamomile for now), but maybe you can feed your addiction this way

Chel

 

[Endless]

That's a great idea, Chel! At starbucks they'll also make an iced decaf coffee with soy or rice milk. Or the same in a Latte. I call it my "what's the point?" drink. (nothing's really in it, but it scratches my coffee itch!)

 

[Chel]

At starbucks they'll also make an iced decaf coffee with soy or rice milk.

Good to know! Do you happen to know if they also have lactose free milk? I'll be in the US in a week, hunting out all things gluten free, lactose free and trigger free...

Chel

 

[RobinN]

Hi Jackie - Rebecca's first seizure was after one of Starbucks sweet coffee flavored drinks. I was told that diet does not play a role in seizures. The first wrong information I was given. We unfortunately put her on medication and waited more than a year to consider nutrition as a trigger.

Yes there is aspartame in those coffee drinks. Maltodextrin (a form of MSG) in others. I personally would stay away from soy. Sad to say but water is the best drink for your health. Fresh lemon sqeeze in the water is also a good choice.

 

[Endless]

Chel,

You could ask them about lactose free milk. I was surprised when they had rice and soy, so you never know. You can ask for sugar free (and no syrups!). You can also carry around a little snack container of your own dairy/sugar free unsweetened chocolate powder to sprinkle on top. Dropping a piece of chocolate in it is nice, too. You taste it when you hit bottom. (Look at trader joe's. they have lots of premium milk and sugar free chocolates)

It just cracks me up when I go through the drive-through at starbucks, ask for a rice milk drink, and they ask "do you want whipcream on that?"

 

[Cint]

Hi jackie,

I started having seizures, both CP and TC, 30 years ago, long before Starbucks was around and long before I was using any aspartame. The dr. started me trying Dilantin, but it didn't work for me, so we tried 11 different meds, brain surgery and now the VNS.

Yes, we do have lactose-free milk here in the U.S and gluten free products, at least here in the Denver area.
I'm on my way to Starbucks now.

I hope your seizures are under control again soon.

 

[Literophile]

I can't drink coffee at all, because it gives me heart palpitations, sweats, and I start climbing the walls, but love my decaf, and adore a decaf iced coffee...

OMG, I thought I was the only one who this happens to. I can't even have decaf, though, which makes me more than sad. I can't even have caffeinated tea... The last time I had something with caffeine (Excedrin) I was twitching so badly I had a stutter and my entire body was twitching. I couldn't sleep until about 1 or 2 in the morning.