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Do all people with E get triggered by stimulants like caffeine? and if not, why would only some people have it as a trigger...why wouldn't be a universal trigger like sleep deprivation?
I remember a few months after I was first started on anti-convulsant medications, I was constantly tired and foggy in the brain, and had the concentration span of a three year old. It probably wasn't only symptoms of the medications, but of the seizures too. Anyway...I'd just started tertiary study (bad timing) and couldn't deal with feeling so drowsy all the time. So I started to take these caffeine pills ('No-Doze') and quickly grew addicted to them. As a consequence, I started to get the most trippy temporal lobe seizures, and my hands were always shaking.
However, I LOVE coffee, and sometimes am prone to drinking an awful lot of it. It's never had the same side-effects as those damn caffeine pills though ;-) And after three years of taking epilepsy meds, I can handle the drowsiness a little better (without abusing stimulants!).
Caffeine is a known weak drug in the same category as the stimulants used to treat ADHD - ADD - Hyperactivity.
Caffeine can lower the seizure threshold for some of those with epilepsy.
You're right -- and in some cases, cases I've seen at school, caffeine is used INSTEAD of Ritalin. I had a student who, because parents refused Ritalin, had it in his IEP to have a can of Jolt cola every day at 11:45, because it shut the ADD down. I kid you not, the kid was bouncing off the ceiling (forget the wall, he was long past it!) when he went upstairs to get it, and mellow as a cello when he came back down half an hour later. Totally different kid.
If caffeine is such a stimulant, how come it settles ME down when I'm totally stressed? I've had more sz OFF caffeine than I have had with it. In fact, one of my automatisms used to be that I would go in SEARCH of it to pull me OUT of a sz, apparently. I've come back from so many partials with caffeine in my hands it isn't funny.
I drink coffee in the morning, and most of the afternoon. If I don't, I get a headache but I'm sure that's because of the Caffeine. I drink Coke with dinner, and then drink it all night. I think I need to curb my Caffeine usage. Any suggestions how?
First step in changing it is to do just what you did - track what and how much you drink to know where to start changing. Since caffeine can affect someone like a drug - and actually is considered one by many people, talk to the doctor first about how caffeine affects you and what to do.
Here are a few general ideas....Since caffeine can affect sleep, which in turn will affect seizures, limiting caffeine in the afternoon and evening can be the first step. This includes the caffeinated sodas, coffee and teas. Then try changing to decaff coffee or tea - sometimes it's easier to first change coffee to 60 % caffeine and 40% decaff then 50/50, then 40/60 then all decaff.. Then try changing to sodas that don't have caffeine.
To make changes work, pick one habit at a time to change, make a schedule to help you follow it, and do it slowly. If headaches occur when making these changes, talk to the doctor about how to treat these. Once the body gets used to the changes, the goal would be for headaches to be better!
Work with the doctor or nurse if there's one working with him about plans to come off caffeine. They may have some helpful tips and their support and encouragement will help you be successful. Good luck!
I've never had an issue with drinking caffeine. I used to drink a large mug of it daily (32 ounces) for months to keep me going while working long hours at work. When I stopped working I kept drinking coffee but just didn't drink that much of it and started with pop like Mt. Dew. (regular or diet) and I was usually happy with that. When Coke Zero came out, I have been happy with it.
Something you might want to try is mixing fruit drinks or ice tea in with your eating diet. Perhaps consider discussing this with your doctor may help and get them involved in what you want to do.
Hope you find a solution! Keep us posted! :)
I hate to burst your bubble Sue, but every can of Coke Zero contains 34mg per 12 ounce can, check the label. I drink it too, but started for the reduced calories.
I'm not worried with the fact that it has caffeine in it. LOL!
Caffeine is actually the least of my concerns when it comes to causing seizures. In fact, I grind my own gourmet coffee beans every so often. *smile* As a matter of fact, I just got a breakfast blend the other day when my husband and I were out which is marvelous! :)
I didnt start drinking coffee till I was well into my 30s. I just never did ,ok? Most of my 80 or so grand -mals occured BEFORE my drinking coffee. In other words caffene doesnt seem to affect my epilepsy. This is not to say it wont affect you . I can just speak for myself.
Dave, this was an old post but do you think the caffeine played a role in decreasing your grand-mals? We see caffeine as something bad but if there is some type of disruption going on with the electicity in your brain, maybe the jolt of caffeine can boost this and somehow help it function right. When a person is having a heart attack the docotors will often use those shock things to try and jump start their heart. Maybe this works similar to that.
Hi Pamela :)
Ok, let's start with this:
"Tobacco is carcinogenic, it causes cancer in all people."
Sorry, but such is not true.. ie 'all' are NOT affected...even 'all smokers'.
Case in point:
My father smoked 3 packages of cigarettes per day & is now 87.
(Here is someone who smoked ,more than average, for 30 years yet he's already outlived the typical male)
You are also thinking that caffine should cause the same effect in all people and find the fact that it doesn't strange.
For decades I drank many cups of coffee daily, yet I didn't seize every day.
My seizures had no parellel with my drinking coffee. (nor did my sleep patterns as I always slept very deeply due to the meds.)
What the caffine (stimulant) did do was wake me up from the constant stupor I was in due to being loaded down with (depressant) AEDs.
I still drink coffee; but, today, most cups are decaffinated & it was never suggested to me ,even by my epilptologist, that I nix caffine from my life either.
I'm also willing to bet that even within the confines of that which is within the common denominator as 'a cause of seizures': "sleep deprivation", that some people can take a lot less sleep before they react, while others only need one late night before they seize.
Bottom line: the universal trigger (ie common denominator) is not as identical (common) as it initially appears.
If it was easily determined what definitely causes seizures, many would be able to completely control themselves via simply adherimg to the rules.
However, just as one med can cause a different reaction in different people, it's also true that the causes of seizures vary.
If such was not the case, E would have been completely cured eons ago.
hope that makes some sense,
Caffeine disturbs your sleep patterns because it is a stimulant. You may not think it is affecting your sleep, but it is. You're just used to the affects of it, so you don't feel the "high" that caffeine gives. I used to drink Dr. Pepper like it was going out of style. I drank the majority of it before bedtime, and nearly all of my seizures were at night. I finally gave up all caffeine totally, not even a sip, and 90% of the nocturnal seizures stopped. After a year or so, I would take little sips of my husband's coke, and I'd get a buzz from it. Sometimes I'd have a seizure as a result if I had a little too much.
The point is that it is a stimulant for everyone and affects everyone's sleep patterns to an extent. Some with seizures are a little more sensitive to sleep disturbances than others. IMO, it is extremely unwise to drink caffeine.
It can also hurt your short-term memory.
But I need it for the opposite reasons, my brain shuts down for long periods of time and I need it for alertness.
I agree. I drink Dr. Pepper every day several times, even at night. I have been experiencing seizures for over 25 years. I did go on medication until 21 years ago, and I had an accident after going COLD TURKEY on Friday 13th Dec. 1996. After the accident, the neurologist put me back on the medication and a new one as well to wing me off of the Dilantin. I was fine for about 14 years and I am experiencing some daytime seizures every few months.
In addition, I have a problem drinking fountain soft drinks--they are so sweet-- so they cause my liver to excreet sugars into my body that makes me feel dizzy etc. So, I truly believe Dr. Pepper causes me to have seizures. Also. Dehydration from overheating playing softball etc. right now because it's so hot! I came home Tuesdau night and was already sore within a few minutes--not a day! The next dat I began having seizures too.
I have no idea what the answer to that is! I love coffee and can't imagine giving it up! I guess its the same reason some epileptics are photosensitive and some aren't... has to do with what exactly is wrong in our brain.
I agree -- Caffeine causes the blood capillaries to expand thus causing an effect on your brain. I had a panic attack last week a near episode and it was probably because I hadn't had my daily coke for about week. I just stared at the television, I tried doing crosswords, I was stuck. My seizures causes me to be in a Funk (I'm sures are different). Anyhow, I had a coke and within minutes I was clear as a bell.
Next, I spoke with my doctor and he explained the above.
I spoke with others and a friend of mine explained the same thing saying he can't drink caffeine because it has the opposite effect. He has to drink it constantly or otherwise it constricts causing an extreme migraine when he doesn't drink it.
My brain can't handle the shutdown and his can't either but in different ways. I need it and he can't have it. He can survive without it, I can't.
I don't know. I am in between neuros right now and the one I was just with made me cut all caffeine out. She didn't like that I had one can of pop a day. The dr before, an epileptologists didn't see it as a problem. I plan on asking the new dr I see next week because I miss my cherry coke too much. :)
balletkat you must be from Buffalo,NY know says pop but people from Buffalo
Balletkat and Jersey,
I still don't understand it at all? In pregnancy for example, a substance that is harmful to a developing fetus is called a teratogin. And regardless of your age, race, etc...that same teratogin will harm every fetus. Tobacco is carcinogenic, it causes cancer in all people. Sugar can be fatal to everyone with diabetes mellitus.
Wouldn't the same logic follow? If seizures are brought on by neural excitation, and caffeine can have this effect on the brain, why wouldn't it affect everyone the same way?
God I feel so dumb!!!! my brain just cant get it!!!arghh
someone please try again and explain it to me, I promise I will try and pay attention...LOL
about this caffeine. my friend had at least 8 cups of coffee at night and I know that is not good for a 16 year old. I found the studies that caffeine is a stimulant and can calm down the ADD and ADHD people. my friend has changed and he had played video games all night and drank coffee. in the morning on sunday may 4th at sunny's, he fell into a seizure. I found further studies that too much caffeine can cause seizures if in large doses at young age and don't dose a lot before. I went to the hospital and did a cat scan on my friend and every test they did came back normal. if the caffeine has been doing this to people, then they need to put warning signs on the coffee containers about the wareabouts on caffeine. I don't want to have my friend drink more coffee. and if he has at least 2-4 cups, then i would get up and take it somewhere that he will never know where it is, even though he's my friend, i need to protect him always. I want people to understand what dangers it can cause to people with ADD and ADHD like me about overdose in caffeine.
I'm saying that we can retaliate about putting warning signs on coffee products to tell them that they should have this many cups of coffee eveery day or every hour only if used to treat ADD and ADHD for speacial reasons and used for adults supervising. like I do, i get like 2 ever morning but the max. i can bring is 4-6 then I'm tired out of coffee till the next day. but when my friend started. he was about 15 when starting and he usually gets 1-3 cups every morning and the night before he had a seizure of it, he had about 6-7 cups. that's all I can remember. I only had at least 1/2 a cup that night and he thought i poored it down the drain. it's good that i took the last one becuase there are studies about people dieing on overdose in caffeine. we should bring this the to presidents attasntion or the head of the coffee industry. I just don't want to have my friend in that state any more.
While I don't think that caffeine has brought on any seizures for me, it has contributed to anxiety and panic attacks since my diagnosis. I have stopped drinking anything with caffeine and cut way down on sugars. It seems to help, but it slows my cognitive abilities and makes me much more drowsy!
My most recent seizure seems linked to caffiene. I have juvenile myochlonic epilepsy and when am having myocholonic jerks sometimes if I take small doses of caffiene the jerks will go away. High doses of caffiene or other stimulants seem to bring on my myochlonic jerks. Oddly enough caffiene has been the only stimulant that has been in my system for every one of my seizures. My last seizure however I had taken a redline energy drink, some zantrex diet pills and some nos blast work out fuel. Seems to me I'm fine as I keep moving when I load up on caffiene. If I sit still I might start having myochlonic jerks, which in my case are a bad sign.
guess my original thoughts were that when I drink any amounts of caffeine either in coke or cofffee what have you, immediately, my heart races, I get loads of PVC's ( pre-ventricular contractions) in my heart, and as soon as it hits my blood stream, I have Seizure actitivy. been that way since I was old enough to start consuming caffeinated products. why am I so sensitive and others with Epilespy are not? why is there a difference? what makes each of our lowered seizure thresholds different? why is one persons thing strobe lights but another person alcohol? why are all of us across the board suceptible to the same things? but it does appear that most of us can't pull loss of sleep?
anyone take a crack at it? my question was poorly phrased back then and is still probably poorly phrased now, sorry folks I'm brain damaged :(
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Written cautions (warning labels) about caffeine already exist (2010). Written cautions (disclosure wording printed on product boxes) for caffeine sold as a FDA approved alerting aid (100 mg caffeine) in the pharmacy area of a grocery store in the USA have been around for over 40 years. Caffeine is a known weak drug. Some energy drinks containing caffeine have mild caution labels. Soft drinks list the caffeine content but often do not say much more than that. The caution labels for alerting agents are often along the lines of: Warnings - For occasional use only - Caffeine warning: The recommended dose of this product contains about as much caffeine as a cup of coffee. Limit the use of caffeine-containing medications, foods, or beverages while taking this product because too much caffeine may cause nervousness, irritability, sleeplessness, and, occasionally, rapid heartbeat. Compared to other drugs such as nicotine and alcohol, coffee/caffeine - when used in moderation - is deemed to have less side-effects. Caffeine is known to be weaker and safer than all the prescription only stronger stimulants such as Ritalin, Dexedrine, and Adderall. Caffeine is the world's most widely used psychoactive substance (coffee, tea) and it is such a large business item/international business that manufacturers tend to not talk about the caffeine at all/what it does/doesn't do. Generally speaking, nutrition including caffeine is ignored by the medical community and not talked about much at all. Doctors are quite quick to prescribe Ritalin, Dexedrine, and Adderall without mentioning the existence of coffee/caffeine compounds/FDA approved alertness aids. It's quite common to see a picture of Santa Claus drinking a soft drink containing caffeine during the Winter Holidays/Christmas Season. Again, written cautions about some caffeine (products) have been around for many decades in the USA already. There also has been a slow, systematic upgrade trend to written cautions for soft drinks and energy drinks containing caffeine too. There is a growing awareness to inform consumers that caffeine is a weak drug and that consumers have the right to know that caffeine is a weak drug vs an inert ingredient. Caffeine agrees with some users; caffeine does not agree with other users who choose to avoid it and consume something else.
Dear Captain 101,
Do you really think warning labels are needed? People just need to use common sense or if they are children, the parents need to be on top of what's going on. I'm sorry your friend had a siezure but please help me understand why he would stay up all night playing video games and drink 8 cups of coffee. If I went to McDonalds and ate 8 Big Mac sandwhiches I would feel sick and my body would likely not be able to handle it. I think I'm going to be sick! LOL
well people need to know the facts. in the news paper, the TV news, anywhere that need that info. I don't want to see my friend having seizures again and people need to know what can happen if over dosed.
when i stopped caffine i started feeling a lot better and my night seizures lessened in number. One thing to remember there is a lot of caffine in a lot of things.
I drink coffee. I don't abuse it like majuana or crack cocane. i don't do any drigs except for caffeine but I only have like 1-2 every morning. this morning, I have at least 1. that's all I had. that's because I woke up late and almost missed my bus. I needed to wake up so I can feel aware about what's going on in school.
I called my friend today and he said he's fine and i will be at his aid for a while so some of the caffeine will flush out and he drinks some water. I also told him to stop what he is doing when his head gets light and stuff, sit down, and don't stare at a light source. when you feel much better, report to the office and then have your teacher notified right away by the teacher and report to class, or wait till parents get there. I know what it feels like when I almost had one. I had to calm down, sit down, and don't look at the light. I know what the effects are. if you don't know the effects, then look up anything that can happen when about to have a seizure in the midical book or on the internet. that's your best source of looking for info on how to keep it from happening. if you have seizures of anything else besides of caffeine seizures, then I sugest you talk to your doctor today.
i may have missed this discussion, but feel i mst reply... yesterday i drank an unusual amount of soda, 2 in afternoon & 1 after 9pm. early this morning i was 'welcomed' to my first seizure in close to 2 months.
i think, due to an over abundance of caffeine these past few days, is to blame. everything in moderation right?
all my life i had been seizure free, but after drinking 1-2 NOS energy drinks a day for work, did i begin having experiencing petit mals, & after being laid off in feb. 09 did i start having grand mals.