Stupid question of the day

Does coffee trigger seizures? I was told to avoid alcohol but not caffine. I had three cups over six hours then managed to have two seizures within a half an hour. I’m newly medicated and my dosage is on the rise. Thanks in advance for you insight :slight_smile:

I do not have any seizures with coffee. Perhaps the dosage of the medicine reaches yet?
Maybe you must wait.
it’s no stupid question! :slight_smile:

Not a stupid question! There’s so much that doctors don’t know about seizures, and we have to find out for ourselves.

Since coffee is a stimulant, and anti-seizure meds work because they have the opposite effect, it seems possible that caffeine could be working against your meds.

Tiredness is definitely a known seizure trigger…were you drinking coffee to stay awake?

I never ws told that caffeine would trigger seizures but in general it really isnt good for you…and off the record this is not a stupid question buddy…everything & everybody that takes part in this site is here to help & look for guidance…even if it sounds stupid to you!

God bless you

I found discussions about coffee in german language
http://forum.epilepsie-netz.de/index.php?PHPSESSID=9266e30bf23591d197b4eb53add17780&action=search2

to translate all is too much.
only this:

drink lots of coffee keeps you awake. too little sleep is a trigger for seizures. dehydration due to drinking to little too trigger seizures. coffee, cut off the water from body. this could be also the reason, but not necessarily.

there are so many possibilities, what was the reason for this.

I drink coffee just because I like it. I find the Keppra makes me wired so the additional caffeine didn’t help. I just can’t sit still. So yesterday I had three cups over the course of my morning, I had completely tore apart our bedroom, purging, cleaning, trying to use up this extra energy; then I crashed. My seizures are partial focal affecting my mouth, swallowing and speech. Then it will travel down my right arm and I lose the use of that as well. Once I have one I historically have two more within the hour to varying degrees. Stress and exhaustion are definately triggers.

maybe you’re just doing too much and your blood pressure has risen?

Possibly. I’m going to try to relax today. I think I may working my way through the stages of grief. Through the discovery, testing, Gamma, recovery I was strong and resilient. Now I am dealing with the side effects of gamma, seizures, new meds, no job, no licence, kids are back to school etc etc etc. I’m restless, frustrated, angry, sad. Many days I wish I never knew about the AVM; I don’t feel lucky.

Stephanie, I’m not a doctor but I was a three to four cup coffee drinker before my AVM surgery in 2006. After the surgery I was unable to drink coffee because I threw up so much. (I know TMI) . But now I look forward to my cup of coffee every morning but I can only drink one. I look at it like a sign that I drank too much coffee. Does it trigger seizures… Surely not because I drank a bunch before my surgery and never had one. But again everyone’s journey is different. Ask your doctor specifically about coffee. That’s probably your best bet. Good luck to you and remember we’re here for you if you ever need it. :slight_smile:

Stephanie, This is NOT a stupid question…

Even before I had my brain bleed/cran…I only drank decaf coffee as caff coffee made me have a problem with anxiety… Who needs that???

Now, I have 2 cups a day, 1 hour after I take my medication and it hasn’t caused any seizures. If you love your AM coffee, like I do…give that a try! Good Luck!

Follow up… Major swelling is triggering the seizures. Will continue to monitor the swelling and up my seizure meds. Back in 3 months for yet another MRI.

I can relate to all of the above. I will say I drink coffee with no problems usually 2-3 cups a day and at least one cup of green tea. I am very strict about getting enough sleep and drink the coffee throughout the day. Maybe having it so close together is not so good because even someone without seizure would crash. If they have been adjusting your meds that could be a big trigger also, I know when they change mine it seems to take weeks to even out. It is increasingly hard to pull the positives out of this but we have to have faith that we will make it through and have a lifetime with our children. Nothing luckier than not being the other 10% (don’t quote me) that aren’t as fortunate. Stay strong and remember you are not alone. <3

Now you know. Did they say what is causing the swelling? How did they figure that out, and mri? Sorry to ask so much but I am learning as I go also and due to my issues (not full on seizures, mostly severe headaches)I am due for an mri on Monday.

Hey Stephanie,

I am on Steroids and tapering off for swelling (they have horrible side effects). I have never had a seizure thank god just headaches etc. Are they treating you for the swelling? did they tell you how long the swelling will last? feel better soon.

My doctor doesn’t want to treat for swelling yet just control the seizures. The feeling is that I am responding quicker to Gamma than they imagined. The swelling is a side effect from Gamma and the seizures a side asffect from the swelling/gamma and avm. I will go back in three months for another MRI and in the mean time can email my surgeon with any questions, concerns, changes.

Gamma Knife is causing the swelling but it appears to be to doing it’s job already.

Hi!
I was advice by my neurologist to avoid anything that can rise my high blood pressure like caffeine and a lot sugar or to lift weights or to work up also alcohol. If I drink a lot of coffee i do feel like my head is gonna explode also with alcohol and dizzy spells. I used to drink a lot coffee since the stroke happen I only drink half a couple of coffee. Because they said It can cause me another seizure…I still have my avm and aneurism and Im under lamictal 300 mg… Good luck my friend… By the way is not a stupid question ask, ask a a lot question we are the one that are sick and nobody knows how we feel.

Aside from the swelling that is great news! :slight_smile:

When did you have Gamma? I had mine in June…Wondering if swelling isn’t what I’m dealing with if we are on a similar timeline. Do you feel sensations in the area you had the Gamma, like a pulsing or dull aches?

June 22nd :slight_smile: At the site I have hair loss and bruit (whoosh, whoosh, whoosh. I have occational headaches and chose to sleep with an icepack on my neck most nights. My AVM is on the Left frontal posterior lobe about 3cm and the swelling is causing problems with the right side of my body.