New - Epilepsy triggers?
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UPDATED: Tue, 11/27/2007 - 6:24pm
Sasa
Coffee and Anti-convulsants
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I have sleep-related epilepsy...so basically I've never had a seizure when Im awake. Only in bed when Im asleep. Now my concern is this...I'm a student and I work at the same time so I get about 4-6 hours sleep a night....I'll get about one 9 hr sleep a week. I will wake up exhausted and go to class and end up nodding off....and its embarrassing because my head will jerk forward....I dont think this is a seizure becuase my neurologist said that its normal for everyone to jerk when theyre falling asleep and entering sleep mode....and Ive also seen other people jerk in class when theyre trying to keep awake. Lack of sleep combined with the meds makes me exhausted....I think the meds add to the lack of energy.
So anyways I drink tons of coffee to help me stay awake and I know this isn't very smart as it counteracts the anti-seizure meds and probably makes them less effective but I dont think Ive had any seizures (then again I cant tell right? since I have them in my sleep).
Gahh I just dont know what to do....I dont know how to figure out when Im having a seizure or not...I have grand mals too. Oh and in case youre wondering how I even got diagnosed if this all occurred in my sleep? I was diagnosed at the age of 16 and was stil living at home with my mom and I had a spring mattress and one night she heard it REALLY loudly because I had a grand mal and she peaked in and saw me jerking so it was thanks to the mattress....haha.
By Sasa at Tue, 11/27/2007 - 6:24pm | 383 views | 9 comments
Topic: Medication Issues
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Recent Comments on this Discussion
I have drank coffee for most of my teenage and adult life. I have known about my seizures for 38 years and counting. My seizures are effected by lack of sleep, hormones, and stress. I began to limit how much coffee I drank after the birth of my youngest son- mostly because the hormone imbalance threw my seizures out of control. I still enjoy my morning coffee. I limit- but do not exclude coke or pepsi from my diet. I limit soda for other practical reasons. (It basicaly goes thru me faster than water). What I would be more careful about are the sugar substitutes. I think they have a more devasting impact on our meds. There is no way to tell how they will interact. The knowledge that they are chemical in nature, combined with the amount that is consumed thru coffee, tea, or soda is more the issue. I truly believe moderation is the answer for all of us coffee lovers. If one is really addicted, they should reduce their intake gradually. That is something I have learned over the years- just like changing our meds- nothing should be stopped suddenly. It adds stress, and our brains do not handle stress well. Good luck coffee lovers!
I must agree with the coffee drinkers I am a Cuban girl (professional) and grew up on Cafe con Leche-- expresso and frothy milk- I absolutely do not feel that this has any known cause for making me have a seizure . I take Trileptal , exercise twice a week, get enough sleep and try to eat well..seizure free for over 10 years..
I limit myself to two cups of coffee- one in the morning ( starbucks or Dunkins ) then in the afternoon- not for a (pick-me- up) but because I enjoy it!!!
I agree with the comments that too much caffeine can be a problem, especially for people with seizures associated with sleep. Caffeine, while a stimulant to the brain, can also interfere with sleep stages and leave a person chronically sleep deprived. The chronic sleep deprivation is probably the factor affecting the seizures, headaches, constant fatigue, even cognitive problems and mood issues. We often blame meds for these things but lifestyle should be looked at first.
While coming off caffeine may be hard, it's the first thing to try. Gradually lower it and try not to have any after mid-afternoon. Sometimes people have headaches coming off caffeine - may be related to withdrawal effects, but they'll go away. Talk to the doctor though about how you are feeling, what works, what doesn't.Also track seizures and sleep in relation to how much you sleep, how much caffeine you have etc.
Doing all this may mean relooking at school schedule so you can have time to study, play etc without staying up all night!
Good luck,
Epi_help
Epi_help Resource Specialist
I must have at least one cup of coffee a day. It helps me wake up and pay attention in classes. Sometimes if I get an extra strong cup, I can feel the buzz. I now get mini myoclonic seizures (thanks to Lamictal!) and it seems like they are increasing due to the caffeine. Maybe it's because coffee already makes you jumpy? I have no idea. What do you guys think?
it's not coffee you need to be careful with, it is caffeine.....so chocolate, sodas, anything with caffeine can be a problem if not taken in moderation......i have to have 2 cups of coffee every morning just to get my brain above that sluggish, muddy state that my meds leave me in...but i limit myself to 2 cups and then only in the morning. I try to limit any caffeine after 2 pm.......
Caffeine is Bad, Bad, Bad! It interrupts your sleep patterns and keeps you from being able to enter REM sleep, which you are hardly able to do if you're only getting 4-6 hours of sleep a night. When I was having night seizures, I cut out all caffeine, and I mean all! Not even a sip of it. Needless to say, it stopped the seizures. If this job isn't your career of choice - if it's just a job to get you through college right now - get a new one. You need one with hours that aren't going to work against your health.
Yeah I read a couple of books recently and both were like cut out caffeine, so have switched over to herbal tea, have also cut out coke etc. I wouldn't suggest doing this in one go if you drink alot of coffee. But effectively our meds slow our brain waves down and your stimulating them with the caffeine so speeding them up...but I guess you knoiw this already!!! Best wishes Bex
As someone who's been an insomniac for all of my adult life, I've found coffee to be tremendously helpful in dealing with the side effects of my meds. I've had seizures (only in my sleep or on the way to the bathroom in the middle of the night) for a little over seven years but, until recently, have treated them homeopathically (medicinal herbs, calcium supplements, Melatonin to falicitate sleep, etc), so I'm still getting used to being tired all of the time. I'm guessing (maybe hoping)I've built a tolerance to the bad side effects of caffiene referenced in earlier comments on this subject.
I have found, that no matter how much coffee I drink (sometimes up to 4 espresso shots a day + 1 cup of regular coffee), I'm sleeping more deeply now than I ever have in my life. My dreams have become like novels, instead of short stories.
I don't think I could get by without coffee. Two days before I last had a seizure (actually multiple seizures which almost killed me - this is why I finally consented to go on conventional anti-seizure meds) I was up most of the night with a caffeine headache, a brutal headache that, in those who are addicted to caffiene, results from going without it. That day I had went without coffee or espresso - ironically, in attempts to get more rest because three days later I was headed to a bluegrass festival where I knew I wouldn't be sleeping much. I can't help but think that the nearly sleepless night when I was fighting off headaches contributed to the seizures I had two days later.
The good news is I did make it the bluegrass festival, though one week later than planned, because I was in the hospital for four days after those devestating seizures.
I drink coffee and Coke like it's water, and can't remember relating a seizure to caffeine. Maybe it's because I've been drinking coffee almost all my life, so I don't think caffeine has any effect on my seizures.