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Old 02-01-2010, 09:39 AM   #1
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Has anyone quit caffeine because they thought it lowered their seizure threshold?

#1) How hard was it to quit? Sorry if this sounds like a dumb question.

#2) How much caffeine were you consuming?

#3) How much of a difference in your # of seizures did it make and how soon did you notice? Did anyone have them stop all together?

 
Old 02-01-2010, 11:16 AM   #2
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

Steve: I'd be interested in people's responses to these questions too.
I never used to be a coffee drinker until I started having seizures. I used to just drink tea. I find that the meds make me sleepy and so the caffeine helps me stay awake. I drink about 3 cups a day right now. I've heard that the caffeine can increase the seizures. It will be a hard job to try to come off of caffeine now for me. If I don't have it now I end up with too many headaches on top of the seizures. My meds don't control the seizures so they're going to happen no matter what anyway. Coming off of the caffeine is going to have withdrawls just like you would if you were to come off of any meds. I'd be interested in hearing from someone who was successful in coming off the caffeine. Maybe it would be an incentive for us.

 
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Old 02-01-2010, 01:48 PM   #3
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

I don't have epilepsy but I did get off caffeine about 25 years ago so I can address that issue. I drank about 3-4 cups of coffee/hot tea per day plus iced tea at lunch and Coke during the afternoon plus I ate a lot of chocolate. So, I did a LOT of caffeine. Getting off it was harder than quiting smoking - honestly! Now, I was pretty addicted and had headaches and nausea when I tried it cold turkey. So I had to wean myself off....it took about a year to get rid of that last cup of regular hot tea in the AM. But I did it and am so glad now.

When I accidently have some now it winds me up like an 8 day alarm clock...and I'm pretty wound up most of the time anyway. People who did not know me when I did caffeine cannot imagine what I must have been like!

 
Old 02-02-2010, 08:26 AM   #4
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

I know that my neuro told me that I needed to stop drinking caffeine because it could cause a sez.

I really wasn't drinking that much, maybe a cup or two of coffee a day, but I like it really strong. If I was out and could get a capichino I would get one of those. I would drink coke, pespi etc... when I would go out to eat.

I started drinking strong decaf coffee and started drinking Sprite. They do make decaf capichino too so I would get those at the coffee shop.

I found out that if I still make it strong, if not stronger it still tastes good to me.

My meds make me really tired so I know if I'm going to have a long day I might sneak a cup of coffee or two. My neuro said that wasn't that bad as long as it wasn't an everyday thing. Too, when I get together with my grandmother we have a cup of regular coffee(it's the only kind she has in the house).

Maybe trying to go down to the coffee that is half regular and half decaf for a while and then go down to decaf. I know there is really good tea that is flavored and you may not know that you aren't drinking decaf.

 
Old 02-02-2010, 09:11 PM   #5
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

My problem was I would go to Starbuck's every day. I would get a Frappicinno which would have 115mg of caffeine. I think on two occasions over the years the caffeine played a role in causing a seizure. It probably lowered the quality of my sleep which no doubt lowers the seizure threshold.

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Old 03-10-2010, 07:12 AM   #6
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

... i am also curious to know if anyone has found limiting/stopping caffeine to be helpful in limiting/stopping their seizures ...


... i have a cubicle job, start the morning out with tea ... probably have about 3 cubs of tea per day with caffeine ... several more of decaf ...

... i have a seizure about every month or two ... and have not tried limiting caffeine yet myself as a means to combat the seizures ...

... has anyone had success with this? or are we just wishful thinking? ...



thx,

ral

 
Old 03-21-2010, 08:41 PM   #7
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Angry Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

Steve-

I quit caffeine cold turkey after developing epilepsy from a right frontal lobe surgery to stop a brain bleed.

I lost the taste and hence enjoyment of espresso. I was drinking (2) 12 oz lattes per day. Seizure activity was no different with or without caffeine, In fact I now occasionally drink a 12 oz dier pepsi to get the caffeine, but only occasionally.The neurologist said the olfactory centers are close to the area of brain bleed and that is not uncommon. I also cannot tolerate alcohol in any quantity. I have bouts of depression, even though I am on 400mg/day of lamictel. I went through 2 aortic valve replacment surgeries, a divorce and the death of father and two siblings, so stress has added to my seizure activity.

My neuro did not pull my license as he was aware of my attention to symptoms preceding a seizure, such as nausea, grinding teeth. These symptoms take about 45 seconds before a seizure. I generally ask my wife to drive when there is any long distance involved or heavy traffic.

Sorry to ramble on, but this forum is a nice place to vent and read others struggle with this epilepsy problem.

Taks care,

Dave

Quote:
Originally Posted by stevefromsd View Post
#1) How hard was it to quit? Sorry if this sounds like a dumb question.

#2) How much caffeine were you consuming?

#3) How much of a difference in your # of seizures did it make and how soon did you notice? Did anyone have them stop all together?

 
Old 03-22-2010, 05:28 PM   #8
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

This was something I wondered about as well. I stopped drinking coffee for about a week after my first seizure. However, since then I've starting drinking again, but I have severely cut back. I know that lack of sleep is a big trigger for seizures so now I just have a coffee in the morning, and sometimes tea in the afternoon, and nothing after supper (5:00pm). I have no idea if this is helping. The neuro didn't say anything about not drinking coffee, but it is something I will ask about next time.

I am a huge coffee lover by the way. Cutting back is difficult!

 
Old 06-07-2010, 04:07 PM   #9
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

Certain caffinated coffees would result in triggering siezures. In order to allow drinking coffee, I could only drink a combo of 50% caffine and 50% decafe coffees.

Since my successful surgery I can now drink caffine coffees without any problems. It would most likely be best if I would quit coffee entirely. However, I truly enjoy my morning coffee.

Jim

 
Old 06-07-2010, 04:39 PM   #10
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

Quote:
Originally Posted by jvmtaz View Post
Certain caffinated coffees would result in triggering siezures. In order to allow drinking coffee, I could only drink a combo of 50% caffine and 50% decafe coffees.

Since my successful surgery I can now drink caffine coffees without any problems. It would most likely be best if I would quit coffee entirely. However, I truly enjoy my morning coffee.

Jim
Hi Jim glad to see your still seizure free since surgery. I had also quit my coffee intake a month 2 months before my surgery as told by my neuro. Now i bn seizure free for 3 yrs and I decided to not go back to coffee just to be safe, and Im also planning my pregnancy so it doesnt help. I do drink sodas and so far so gd. Like you said that can depend on the amount of caffeine intake and the type of seizures the person have. I suggest you take it slow and eat healthy..

laura

 
Old 06-13-2010, 09:01 AM   #11
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

Based on self experience as well as the experiences of a few of my friends who are epileptic.

The concept of quitting caffeine slowing down seizures is a false theory. Many people have tried and there is not one documented case of it actually being the cause of what slows down seizures.

 
Old 06-17-2010, 04:49 PM   #12
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

Hi there,
My daughter is 4 and is on quite a high dose of Epilim. I've banned my mother in law from giving her tea (she gave my hubby tea in a bottle from a very young age, but I'll not go off on a rant about her...) and my reasoning for not allowing her caffinated drinks includes that if her medication is supposed to calm the brain then logic would suggest that a stimulant could counteract the meds.....
Not sure it's true but considering we've had her on life support following one seizure I'm not taking any chances...

 
Old 06-22-2010, 05:41 PM   #13
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

lack of sleep and excess caffeine always caused my seizures. Now I only drink one cup a day...that is my max

 
Old 06-22-2010, 06:18 PM   #14
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

I used to have seizures and tried natural remedies...diet, chiropractor etc...it was intense, but I'm seizure and med free now. Eliminating caffeine was on my list of things to eliminate as a seizure trigger...along with white breat, sugar, alcohol, fried foods and red meat.

 
Old 06-23-2010, 05:12 PM   #15
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Re: Has anyone quit caffeine because they thought it lowered their seizure threshold?

Honestly, not getting enough sleep is one thing that can cause seizures. Caffeine, can make it difficult to get to sleep. How do you know it is not the lack of sleep from the caffeine and not the caffeine itself?

 
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