Caffeine a No-No?

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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

Hi George- "E" coffee addict

Submitted by bazeve1 on Fri, 2006-07-21 - 20:06

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

Submitted by kgknight on Mon, 2006-09-11 - 11:34

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

Submitted by archer1730 on Wed, 2008-07-30 - 15:26

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

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.