[archibrain]

Against popular opinion, consuming caffeine (1-2 cups of coffee in a.m.) prevents most of my simple partial seizures. For me the seizures are the type that cause loss of speech and language comprehension which may last from 1 second to 10 seconds and often happen in clusters, while having full physical ability. I had 3 generalized seizures over 10 years ago and tegretol has prevented them ever since.

For the past 2 years these partials started and have gotten worse and have tried 3 different meds while with a well known epileptologist in Chicago. He believes that caffeine does help me to keep my brain in sync. In fact, he said that he has seen no evidence in his 30 years of treating that caffeine causes seizures. He may have been meaning for my specific type of episodes, but still, I was surprised. I was actually relieved.

For now, the caffeine helps me more than any of the other meds. I've even tested by going on and off coffee a week at a time and when starting back on the coffee, it definitely helped. I wanted to see if anyone else out there sees any improvement with caffeine with similar seizures. I'd appreciate any responses.

[Porkette]

Hi archibrain,

Welcome to the forum! I find your post very interesting. My Epileptologist told me to limit myself to 4 cups of caffeine a day because it has increased my seizures causing more electrical activity in the brain which can trigger seizures. Correct me if I'm wrong but it sounds like your seizures may be coming from the left side or left temporal lobe where a person speech and language are.

A few yrs. ago I tried cold water therapy to help stop/reduce my simple partial, complex partial and absence (petit mal) seizures and it worked great. For the next month take your temperature each day at the same time and every time you have a seizure. Be sure to take your temp 3 times a day at the same time and keep data of all of your temperatures and what time it is. Then start keeping track of how many times a day you yawn and write that down also. They have done a study where yawning cools the brain which reduces seziures. While doing all of this put a cold washcloth on your face and neck 2-3 times a day and each time you feel a seizure starting. The cold water calms the neurons down in a persons brain stopping the seizures.
Each time I had seizures by body temperature was higher than usual and I was yawning less that day. Over in the UK they already have a device out to cool a persons brain and stop seizures. Try giving this a try with the temperature, yawning and cold water.

You should have your Epileptologist do a DNA test on you to find out what seizure meds work the best for you with the least side effects. I found out I was drug resistant after taking over 12 different seizure meds. so I started taking vitamin B12 once a day and I began the ketogenic diet and that really helped me a lot not to mention having brain surgery to help reduce my seizures. Now my biggest problem is being around others who use cell phones cell phone trigger seizures for me this is known as being "cell phone sensitive" it has to do with the frequency the cell phones are in that are triggering my seizures along with the electromagnetic field. Here's wishing you well and May God Bless You!

Sue

[Darlene]

archibrain

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. Our shoulders are here for support in many ways. Looks like Sue has given you some helpful information.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Jameal Afzal]

First of all I am gratefull for the wonderful welcome you gave me how did you manage that. I am Epileptic for the last 25 yrs and now i am feeling the effects of the medication. I am taking Epilim Chrono 500mg 4 times a day now reduced to 1500mg aday, then Pregabalin 75mg twice aday , Lanzoprazole 30mg twice a day. How about yourself hearing caffeine helps well i start the day with two to three cups of tea,

[Darlene]

Everyone is not the same, some are able to do things that others are unable to do with epilepsy. Where it effected Sue it didn't happen to me though the years. It really depends on how much you drink each day and the amount. Then again we all are on medicines that may not help the others. My thought and prayers are with you.

Darlene

[copelsa]

I also have simple partial seizures stemming from a structural abnormality in my left temporal lobe. The seizures usually last from 1 to 5 minutes and consist of deja-vus, the loss of language comprehension, inability to express myself verbally other than simple phrases such as "yes" or "one moment", plus I often experience varying levels of nausea. Within the last week- I have decreased my caffeine level and seem to be having more seizures - I too have wondered if there is a connection.

[Darlene]

copelsa,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a supportive and relaxing place to be. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[lathran]

I have just noticed that caffeine may be helpful, and I don't own a coffee maker. I am prone to partial seizures due to stress. Tegretol XR stopped Grand Mal, to complex, and an electric stimulator stopped complex partial to simple partial or auras. I am unsure if coffee every day is the ticket or not? Usually every day I go to work I can expect seizures. This is why currently I only work two days a week. If I go to Starbucks before work I have just noticed that I can come home free of any difficulty.

Originally Posted by archibrain

Against popular opinion, consuming caffeine (1-2 cups of coffee in a.m.) prevents most of my simple partial seizures. For me the seizures are the type that cause loss of speech and language comprehension which may last from 1 second to 10 seconds and often happen in clusters, while having full physical ability. I had 3 generalized seizures over 10 years ago and tegretol has prevented them ever since.

For the past 2 years these partials started and have gotten worse and have tried 3 different meds while with a well known epileptologist in Chicago. He believes that caffeine does help me to keep my brain in sync. In fact, he said that he has seen no evidence in his 30 years of treating that caffeine causes seizures. He may have been meaning for my specific type of episodes, but still, I was surprised. I was actually relieved.

For now, the caffeine helps me more than any of the other meds. I've even tested by going on and off coffee a week at a time and when starting back on the coffee, it definitely helped. I wanted to see if anyone else out there sees any improvement with caffeine with similar seizures. I'd appreciate any responses.