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George R

Caffeine a No-No?

The more I ask folks with "E" about their reactions to caffeine (in far more foods than coffee and tea), the more I realize I'm not alone. For as great as a cup of that brown stuff tastes, it sure can screw up my neuro system. Indeed, in most cases when I have a seizure or get "auras" -- I've had coffee, or an extensive amount of it. Oh, maybe that wake-me-up cup in the morning isn't that bad, but those pleasure-filled cups can become addictive, can't they? Let's hear how you and Starbucks get along!

--George

Comments

Re: Caffeine a No-No?

As others have stated, it's not the caffeine on its own that is causing additional seizures. But, caffeine can definately contribute to the problem. Through personal experience, I have seen the affects of daily caffeine intake on an epileptic. A few years ago, I was drinking one bottle of caffeinated cola every day I was at work. I did not know it was caffeinated, so I didn't see the harm in drinking it 5 days a week. It was a slow process, but after about a month of drinking this beverage 5 days a week I had a seizure. After the seizure, I felt another starting, so I was taken to the local ER where I had another grand maul in the waiting room (got me back to a bed immediately). After some medication, the seizure activity stopped and I was shown the results of the lab work by the MD. I had a potassium level of 2.7 and my phenytoin level was around 6. After telling the MD what I had been drinking while at work, it became clear that caffeine had played a role in the seizures. The caffeine does slightly increase blood flow & pressure, but what really got to me was the diuretic effects of the caffeine. I was urinating much more frequently which lead to a loss of potassium and the low Dilantin level in my blood. The primary cause of the seizure was a low Dilantin level. This, though, was caused by the low potassium levels which is due to the effects of the dehydration caused by the frequent urinations, which, in turn, was caused by the regular caffeine intake. Dehydration is a very common cause of seizures, even in nonepileptics. Caffeine definately contributes to dehydration, so if you have epilepsy, use caution in over using caffeine. It's just like many other problems, caffeine is fine if used in low levels, but when its levels get too high, problems often occur.

Re: Caffeine a No-No?

I was diagnosed with Epilepsy in 1998 and have tried different medications since then. I started drinking coffee daily in 2007 while I was on Lamictal and Topamax. I never had any issues with caffeine until this year when I switched to Keppra. Now, whenever I have a cup of coffee or tea, I have a terrible headache/migraine for several hours following. What stinks the most is that all of these medications have made me extremely drowsy and I really would like to be more lively during the day without a constant headache.

Re: Caffeine a No-No?

My doctor said he has no problem with coffee. It's a good thing cause I damn near overdose on the stuff every morning.

 I have JME, which causes myoclonic jerks in the morning. I find that coffee helps me come out of the jerky stage. It just sucks when I spill it all over myself! My desk chair will forever be coffee stained :)

It is funny, coffee usually gives me a sensation that feels like an aura, but it rarely causes seizure. I think it might be just the buzz.

Re: Caffeine a No-No?

This post removed by webmaster due to violation of terms of use of the site. It was not deleted so that the responses below would not be lost.

Re: Caffeine a No-No?

I take two No Doz (400 mg. caffeine total) first thing in the morning then I drink one cup of coffee.  I drink green tea during the day, along with water. 

 The Neuro never mentioned caffeine as a *no-no*.   Alcohol was about it. 

 And, since Excedrine Migraine has caffeine in it and caffeine is mentioned as an aid to migraines, I can't see how it can be bad for your brain. 

 Since I am on Topamax, I have not had a migraine in months, knock on wood. 

 Bottomline?  I love caffeine and see no reason not to eat it, drink it or ingest it in any way.  As long as you don't have negative/bad side effects, etc.  If you feel bad, don't.  Seems simple. 

Re: Caffeine a No-No?

 

I am sure I am the only one that will say this but my 4yr old with primary generalized epilepsy does better with caffeine.  If he is having a really bad day 30-50 patite mal's and 2-3 grand mal's I go buy a mocha from starbucks and the change is almost instant! I was hoping to find someone like that but after reading a few I see he might be the only one. Any advice he has failed all meds and has a VNS that works about half the time.

Thanks

wondering mother

Re: Caffeine a No-No?

My son has a complex partial after just one pop/soda.  He also has one after having anything with Aspartame.  

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Have a great day!    ~Val~

Re: Caffeine a No-No?

Caffeine being a stimulant I suppose can cause szs, Tea usually has more caffeine in it than coffee so those who are sensitive to coffee will more like as not be sensitive to Tea as well.

I personally have mixed and matched my drinks and food to try and isolate a trigger in them for me but thus far nothing.

Is it still hot and Humid in NYC Early (ploppy)

Re: Caffeine a No-No?

I feel really wierd anytime I have anything with aspartame.  It makes me sort of anxious, and I start feeling wierd sensations going up my spine (nervous system).  I know that sounds crazy, but it happens every time - even if I don't know till later that the drink or food has aspartame in it.  Anyone else ever feel strange with nutrasweet?

Re: Caffeine a No-No?

My first neurologist told me 18 years ago to avoid anything with aspartame, go easy on the alcohol, but never said anything about caffeine.

So, I never drink diet colas and such (and when I have I feel ill) and when I chew too much gum - same thing.

Give me sugar over that artificial crap anyday. 

 

Re: Caffeine a No-No?

 

I love coffee and over the years have been building up and was drinking between  eight and ten real mugs of coffee a day.

I started getting bad dreams and what I thought was Panic attacks (Deja Vu and intense feeling of fear).

I was driving home one night and had what I thought was a panic attack shortly followed by another one. Next thing I knew was that I was hanging upside down by my seatbelt in  my car.

I night in hospital with no coffee and my panic attacks subsided. After a week drinking coffee only two times a day the panic attacks dissapeared.

After a lot of research I found that these panic attacks were partial temporal lobe Epilepsy and that I had had a Petit Mal or Grand Mal in the car.

All symptoms have now gone apart from a slight dizziness (about half a second) every now and then.

So in my case coffee was the culprit.

By the way tea does not have as much caffiene in it as coffee and it also has agents which dull the senses as drinking too much tea gives me a headache and makes me feel drowsy.

Odessy

 

Re: Caffeine a No-No?

I have never been bothered by drinking my coffee although I have alot of seizures if I decide to have a soda with caffein, except 7-up but I really think it just depends on how your body works and how sensitive you are to different things.  I cannot have sugar or I seize so rarely have I ever drank a soda.  My coffee I drink black or with french vanilla creamer as a treat LOL.

Hi George- "E" coffee addict

Hi George-

"E" coffee addict here. Love Starbucks, but, Starbucks doesn't love me. Sometimes I wish I could stop drinking coffee, seriously, but so far I still have it and then think "ut oh" here it comes! Some days I think I am ok, and forget but I guess that is what addiction is. I am glad I came on this sight and read what you wrote about coffee. Sugar actually seems to be worse for me. I try to keep away from chocolate because it seems to set me off. Not just chocolate, anything with sugar.

Barbara

Re: Hi George- "E" coffee addict

I've been drinking coffee for many years. I have partial complex ( temporal lobe seizures) but coffee doesn't seem to be a problem. I drink about 3 cups each morning between 8am-12noon. I love all those coffee flavors. I found a site that has over 110 flavors of coffee and soon there may be more flavors of coffee than tea or ice cream. The site has rum raisin coffee, blueberry cream coffee, orange chocolate coffee, red velvet coffee, and just about every donut and ice cream flavor out there is now a coffee. So for the coffee fanatics they will never outgrow coffee. I view Cola drinks as ice cold coffee since the caffeine content is almost equal. I just don't drink it in the evening or night hours, only early morn in 12 oz cups/mugs. If I were going to wean myself off I'd probably mix one cup regular and one cup Decaf together to make those cups 50% of what regular coffee is and then later take 11/2 cup Decaf and 1/2 cup regular to make it 3/4 Decaf then finally the next month just decaf. Doing it that way won't be a sudden shock to your system and the gradual decline won't put you in the caffeine withdrawal symptoms.

Epilepsy, still a mystery to many. Having seizures does not mean we are less of a person, just different. We are capable of loving and being loved.

Re: Hi George-"E" coffee addict

 

I've had Epilepsy for 45 years now, most of my adult life. In retrospect, I wish I had early on learned to avoid, or at least limit, my intake of caffiene in various forms. But neurologists I consulted were very reluctant to accept, or advise me, that caffiene was responsible for provoking seizure activity. Medical science now has improved to the point where this belief can be questioned...but better late than never I suppose. On a personal level, I wonder if my frenetic caffiene consumption for many years was responsible for the worsening of my seizure condition over the years, accompanied by the necessity to take an ever-increasing variety and dosage of medications.

Along with my neccesity for morning and mid-day coffee, I drank Mountain Dew for many years, to the point where a 24 pack would last no more than 3-4 days. How I quit it is a longer story, but suffice to say that my seizure activity has been largely diminished since I switched to Ginger Ale or other non-caffienated pops. I still enjoy my morning coffee, but keep that limited to 2-3 cups in the AM, with cream & sugar (easier on an old man's stomach, perhaps!) I've been off the caffiene (mostly...) for about 6 months now, and my seizure activity has reduced to practically nonexistant...havn't been doing this good in years.

I would strongly suggest that those of you with epilepsy try their best to avoid caffiene, especially not consuming it close to whatever times you may be most prone to having seizures. Also avoid those "Power Drinks" currently being marketed...perhaps if you're feeling low on energy, resolve it by a healthier lifestyle. Sure, many of the meds we have to take have a tiring effect, but there's no real quick fix to that problem. Increased dosages of caffiene and energy drinks will only create more problems...something none of us want or need.

 Archer

Caffeine has never been my

Caffeine has never been my problem I dont drink coffee.
I use be addicted to cokes.
Caffeine has never in my life caused problems.

my seizures come usually without a trigger.
It has been 43 yrs.

Belinda

Re: Caffeine a No-No?

It can be sooo addictive. I've decided, this weekend, that I need to wheen myself off of the stuff. With surgery coming up in August, I don't want to be havin caffeine headaches along with surgery headaches. :)

Re: Re: Caffeine a No-No?

I've never drank coffee, tea, or even cola's with caffeine in them. Thought I was a caffeine free person when my neuro suggested I avoid it. But I take either a prescription or Excedrin Migraine pills when I have one. I knew each pill has 40 mg of caffeine in it, the same as a regular cup of coffee but I don't get tons of migraines and only this one medicine helps them. If I don't have any of that, I take the Excedrine. I had a run of a headache for about 2 months, every morning when I woke up, took Excedrin or my RX, that had caffeine, and when the headaches stopped? I found I needed to take Excedrin in the morning - I had gotten addicted apparently to caffeine. I don't know if it was a physical or mental addiction.

But caffeine does me no favors. It sets up a feeling in my whole body I'm electrified and often starts muscle twitches. And even with that, both of which I just hate, I STILL - use Excedrin. Chocolate BTW has caffeine in it.

Gretchen

Re: Caffeine a No-No?

Hmm-now that is an interesting question. What I did find that was not a good thing for me after a while and with consulting my neurologist was that Excedrine Migaraine was not good for me because of the caffeene. So you may have something about that connection.

Re: Re: Caffeine a No-No?

Humor me if you will, but it's funny enough to share. I tried to pitch this to my neurologist who nearly laughed me out the door!

I was at an average of around 1 BIG seizure a year, with tons of small ones per day (focals). Keep in mind, I didn't even know these were seizures at the time; I was the queen of excuses. Even at one point when I was 18, I was certain my (ex) boyfriend drugged me (I didn't know the seizure was a seizure).

Anyway, after I had my son I was working 3rd shift and I pulled out the most impressive coffee addiction known to man. I drank it like water, all day. I'm guessing around 5 pots a day, to myself. I also am 5'3 and was around 105lbs.

This addiction went on for about 3 years solid, and finally I finished college, got a normal job and cut back. The same day I changed to decaf, I had a seizure. As if my brain was PO'd that I took away coffee.

Absurd, right?

Well, I did it again - I went two years AGAIN with no seizure, switched to decaf and landed in the ER that same night after having the seizure that wrecked my life.

What do I do now? I rock out about 2 pots a day, however, I only drink my coffee black and I don't fancy sweets - so sugar isn't in my diet unless included in some random food.

I don't like many drinks, but I love coffee. I also have a new addiction that is Coke Black. I honestly think there is something in there, I spent 2 hours one day looking for it because Ralphs was out.

I almost pity people I see on TV with a crack problem because I am the same way without coffee. Maybe I am paranoid, but the two times I swapped to decaf - I had massive seizures. I don't care what my doctor says, but Joe and I belong together. Also, he did give me permission to drink black coffee for migraines. I find it to work better than other meds, but I think the warmth itself is just comforting, like Grammy's soup! :D

I may go make a pot now, I'm drooling thinking about it.

Also, when I walk in Starbucks they have a cup in my hand before I even have the money out. They know me on a first name basis.

*stands up*

I am Ellie, and I am a coffeeholic!

*sits down*

Re: Caffeine a No-No?

Of course it's well known that caffeine is addictive, but I swear that there is something especially addictive in coca cola.  I don't drink coffee because it bothers my stomach, so I drink caffeinated pop - the real stuff, not that de-sugared crap.  Anyway, if I'm drinking any other caffeinated pop other than coke, I can wean myself off without too much trouble.  But if I'm drinking coke, I struggle for months to "get clean".  What's with that?

Re: Caffeine a No-No?

I am a complete Coffee FIEND! I am obsessed with it, and not only am I obsessed, but I am a complete coffee snob, only drinking french press at home. I drink at least one cup in the morning, but today I did notice that I wanted more and I am completely spaced out. I have had controlled seizures for about three years, but In college I did about 10 cups a day...I cut back because my heart was racing a lot. I have tried to cut down recently.

My boyfriend was just recently diagnosed with Migraines(funny thing I knew what he had before the doctor did-comes with being an epileptic) and his doctor told him to cut caffeine out completely, although he seems to have attacks more if he doesn't drink coffee. I am going to continue to drink it, although not in as much mass quantity as I did once. :)

Re: Re: Caffeine a No-No?

I agree Coffee FIEND! I am on phenobarbitol, for one, and could NOT live without my java!!!!

Re: Re: Re: Caffeine a No-No?

I'm good for a pot a day. Also another coffee snob - always the good stuff. Like you, the meds knock me down. You need the joe to pick you up.

I drank strong coffee for

I drank strong coffee for decades and liked mine reallllly strong. However; as we're on depressants due to E, and since caffine is a stimulant and thus makes one wide awake, our love of the drink makes perfect sense.
It mutes the 'easily exhausted' feeling one often gets from a strong dose on some AEDs.

However caffine also adds to the risk for osteoporosis (something many on AEDs are already at risk for, due to the meds)
I still drink strong coffee, but mine is now decaffinated.
(I already have osteoporosis so I'm adamant I will keep this from blossoming.)

Re: Caffeine a No-No?

I too, like many others, have the addition - (mine, for you snobs is Kona) I drink somewhere in the range of 5 pots a day, is my normal drink in a restaurant, and does not seem to relate to seizures. I started drinking it when I was put on Pheno to offset the drowsiness and stay awake in class. Headed for surgery, no one has suggested that I go off, and don't plan to, since that would cause caffenine withdrawala headaches in addition to surgery headaches. Starbucks & I are a weekly thing.

Re: Re: Caffeine a No-No?

Caffeine makes me tired. There is no morning pick me up in a cup of coffee for me. I guess I'm just weird like that. I have to avoid caffeine if I want to stay alert.

Emily

Re: Re: Re: Caffeine a No-No?

Great thread everyone! Caffeine is a stimulant and can affect seizures in many people. Sometimes it may not seem like a direct link. Maybe the caffeine is affecting sleep - don't get normal restful sleep with high caffeine, and then people feel tired the next day, and then drink more! It's like a vicious cycle. Being on phenobarb or other sedating drugs makes the cycle even worse..
I've seen many people gradually come off caffeine, either with coffee or from lots of caffeinated sodas and do much better in terms of seizures and overall well-being afterwards. Headaches better too off caffeine.
Coming off is hard though. Sometimes making changes in meds to get rid of sedating side effects makes it easier to taper off the caffeine.
Would love to hear how people do with or without caffeine, and what happens when they make changes.

Epi_help

Re: Re: Re: Re: Caffeine a No-No?

what is E?I can't have caffiene because of my shizophrenia and depression.

Hi girlygirl, 'E' is the

Hi girlygirl,

'E' is the abbreviation many use for epilepsy.

Hi Epi,

I have had np coming off caffine.
I must admit that once in awhile I'll buy caffinated flavoured coffee, but only due to the fact that I can't buy those flavours decaffinated.

~sol

Re: Hi girlygirl, 'E' is the

OMG!! You know something!?! This is a GREAT QUESTION!
I find lately over the last few months, I get aura's after being PUMPED on a cup of coffee! (Tim Hortons' here in Canada!)
It's SOOOO WEIRD! But I only have 2 small cups a day. That's it!

It doesn't happen EVERY day, but only every once and a while!

Re: Re: Re: Caffeine a No-No?

I don't know what the difference between you and the coffee lovers but when it comes to some people all they have to drink is about a 1/3 a pot and they are good to go

Re: Caffeine a No-No?

I get up early, and I'll have a couple of cups over the next 3 hrs (I sip), 2 of those hours being at work in a convienience store (high paced environment), so I use the energy that the caffeine gives me. If I drink 2 cups or more outside of a fast-paced environment, then I begin to feel light auras. If I eat a bit it helps them to dissapate.
I have been able to quit drinking coffee for a while, using chamomile tea with honey, or other kinds of caffeine free herbal teas. I also buy a gallon jug of water, and when it's consumed, I'll put 2 tsp. of sugar in the jug, and refill it with water, shake it up and put it in the fridge! It's so neutral-tasting, and it does the opposite of coffee (it hydrates) while the small amount of sugar gives my body a tiny kick. Buying carbonated water and bottled water is a good distraction for me, because it's something I'm not used to, a change in routine, which takes my mind off of the coffee.
Eventually though, I will go back to coffee for a while, then go through the cycle again!

Re: Re: Caffeine a No-No?

George - NYC
Hi Sara--It sounds like we're a lot alike! I sometimes wonder if my ongoing need for caffeine stems from just basic insecurity. That is, if I don't have that treat near me, it doesn't feel like the day is going well. I know that years ago, older people told me that I would notice that as I aged, I wouldn't be able to take as much coffee. Indeed, I would make fun of the decaff commercials I'd see on TV, and the fact that most always they'd show senior citizens having them. However, now it seems to have changed, and even places like Starbucks feature decaff, although studies show that those cups of decaff have just a tiny bit less caffeine than "regular" coffee. I am currently trying to just plain cut down. That is, have a taste of coffee, but never finish an entire cup. Or even make it, "half regular/half decaff" when I order in a restaurant. Like you, when feeling in good spirits for a while, I'll go back to regular, then when a seizure hits me, it's another "OK, I swear I'll stick to decaff!" But then, I seldom keep my promise. It is a cycle, as you say.
--George

Re: Caffeine a No-No?

Coffee/caffeine is a known weak drug.

For some of those with epilepsy, it can lower the seizure threshold. That's my understanding.

Coffee/caffeine is a weak stimulant in the same category as Ritalin, Dexedrine, and Adderall (prescription ADHD meds).

http://health.groups.yahoo.com/group/Tartrazine_and_ADHD/

Ritalin, Dexedrine, and Adderall, like caffeine, can lower the seizure threshold for some of those with epilepsy also.

Re: Caffeine a No-No?

Hey George,
I have not an overload of caffine before but I know that between chocolate and caffine I can have one. But there are other things that can cause them to. Like headaches, not taking the meds, not sleeping worth crap (like under 5 hrs), and many other things can cause them. So what I am trying to say is that CAFFINE is not the only or main cause of seizures.

I hope I helped you out some how!!
If you have any personal questions then e-mail me at autumnrexcell_epilepticlife@yahoo.com
Just Remember that "Normal is just a setting on the washing machine, and people that have Epilepsy are far from normal!!!!!" ;

Re: Caffeine a No-No?

hi all .

interesting point is-- i don't feel the effect of caffeine  ! i take Tegretol 400mg/ day and i feel very sleepy time to time . Many a times , I drank 1 or 2 mugs of tea/coffee and went staight for 8-9 hours sleep ! again, sometimes i feel sleepy out of no reason and at those times 2-3 cups of coffee can't help !

can anybody explain ? btw, i have bipolar disorder which started only recently .

 

Re: Caffeine a No-No?

Sorry to post off topic, but this is perhaps related. 

Moyeen, 

I have been on Tegretol for about 20 years. I was on 1200mgs a day for most of that period, without any other meds. I think that Tegretol, or just its sedative effects, messes up your sleep/wake switch. It seems to turn on or off at random. Sometimes it was just like my body was asleep, and it didn't matter what I did or how bad I wanted to stay awake, or how much sleep I got, I couldn't stay awake. Other times, like at night, I couldn't go to sleep. When I was in one of those "body asleep" times I felt HORRIBLE, like I had been beat up like a rag doll. If I fall asleep I usually have auras, and can have seizures, so I can't "nap". I too can fall asleep right after drinking a cup of coffee, even though I hardly ever drink it.

My personal theory is that the sedative simply makes you tired or sleepy, then you either fall asleep, or your body simply thinks that it should be sleeping. Then at some time you get over it (more or less), like a "second wind". Then you can function, but only like someone who didn't get enough sleep. So, you are quickly tired again. Etc. The result is that your body clock gets all messed up. You hardly feel any more or less tired in the morning when you get up, than you do when you go to bed. This makes it hard to keep a regular schedule. Sometimes I think that, even if you do keep a regular schedule, your confused body clock and sleep/wake switch can actually aggrivate your seizures, as if you are staying up all night.

I think that this is relavant to the thread, because we drink Caffiene BECAUSE WE ARE TIRED AND CAN'T THINK. However, while this may have some short term benefit, I think in the long run it just ends up hurting.

Re: Re: Caffeine a No-No?

It's coffee for most of the day for me, and then I switch to Coke(Cola) not the white powder. I wouldn't know what to drink without my coffee and Coke. I guess that makes me a caffeine addict. What's the trick to getting off of this stuff? Coke is getting expensive too, I have tried the Coke Zero and was going to switch but my local store said it didn't sell well enough to stock it regularly. I can't, of course, drive, so I can't go to other stores to see if they stock it. Once again, another part of the hell of not being able to drive. I used to drive for anything everywhere, and having E is like having my right arm cut off.

Re: Re: Re: Caffeine a No-No?

I haven't had coffee in awhile as it's been too hot to drink it. When I used to work long hours my normal habit was to drink coffee every morning for the first half of the day and it was usually at least 24 oz, the last half of the day was something like caffeine related such as a Mt Dew or Coca-Cola Regular to keep me going. Needless to say my work hours were on average 55 to 60 hrs a week. *grin*

When I stopped working, I quit drinking coffee that much and the headaches came along. I still do have coffee but it isn't anywhere as severe. I'm not getting nasty headaches either. :) During that period, I never do recall having any problem with the seizures so I really cannot say if caffeine was causing a problem or not.

I have been drinking Coke Zero and Green iced tea. I'm drinking water as well in moderation so there is a mix of liquid and my body doesn't get the feeling of dehydration. :) That's just what I'm noticing from my own experience.