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Epilepsy Cause? Can't Figure Out Why I'm Having Seizures

Tue, 04/07/2015 - 15:16

I'm new to this site, and fairly new to epilepsy. I've read a lot of helpful posts on this forum and thought why not get connected. Anyways, on to my question. 

I've had EEG's, MRI's and CT scans, all of which came up perfectly normal. Doctors can't figure out the cause of my seizures, nor has any of the numerous medications I've tried helped for an extended period. I haven't brought this specific question up with a doctor, as I'm in Canada and wait times for appointments are generally 5-7 months. My seizures first started when I was around 15 years old, I am now coming on 21 and as a child, I couldn't stand the taste of pop. As weird as that sounds, I just could not do carbonated drinks and because of this, never drank anything containing caffeine. Coincidence or not, around 15 is when I discovered Starbucks (and fell in love with over priced coffee haha) . I started drinking coffee on the daily (coffee, lattes, espresso shots, etc) and even started drinking non-carbonated energy drinks when I found out there was such a thing. Is there any possibility that maybe caffeine could be the sole cause of my seizures? From going 15 years without caffeine, to all of a sudden introducing it to my body. Or possibly something to do with the physical coffee bean (possible allergy?)???

Has anyone heard of anything like this before? 

Comments

Welcome to the clubIn here

Submitted by just_joe on Tue, 2015-04-07 - 17:39
Welcome to the clubIn here there are a lot of people who have had their tests all come back normal. But they still have seizures and are considered epileptics. I personally had 20-25 different EEG's all came back normal. I had a chit load of tests all done in a weeks period of time while on spring break. That sucked because I had planed on going to the beach and body surfing. The neuroangeo-gram (MRI of the 1960's) spinal tap and every other test known at that time came back normal. The only tests that was left was you might have guessed another EEG. I was tired from all the tests and fell asleep in it and bingo they found abnormalities (seizure activity). By knowing where that activity came from they looked closer in that area of the neuro-angiogram and found scar tissue in the lower left lobes of my brain. So I am one of the lucky people that has had their cause found.You mentioned medications and posted that you have had many and they never worked. Without knowing the medications or how long you took them it is hard to tell if they worked but you didn't know they were. I have used many meds and they all reduced the number of seizures I had been having. Now did they stop them all....NO I still have seizures. But the seizures I have been having the last 35 years are nothing like the ones I had earlier in my life.Could you have been taking them wrong? Highly possible. Most people see take this 2 times a day so they take it 2 times a day once in the morning and once at night. Well those 2 times need to be 12 hours apart. I learned that the hard way. I had been having a few more seizures then I had been having. When I saw DOC I told him that. He asked if I had been following the label on the meds. I said Yup I take it 2 times a day. The first dosage I take around 7=8 am and the last I take before going to bed which is about 10pm.  He informed me that the length of time between my first meds and my last meds needs to be 12 hours. I started taking them at 8 am and pm and my seizures are back on what they used to be. Another way I reduced the number of seizures I was having was by asking questions. For every question he asked me I had one for that question. It got to the point my seizures were pretty well controlled but I wanted better control. He knew that and I asked him how we could get better control. His next question was "What would you think of coupling your keppra with another medication". Well since I want better control and you think I might get it by coupling another medication with keppra I'll try it. We started on a low dosage and after a month we increased it. After 3 months I was to see him again. In that visit I informed him that the addition of vimpat to the keppra not only reduced the number of seizures but it also shortened the time in them and the postictal time.SO if you really want your seizures controlled and want assistance then first get the My Epilepsy Diary. Watch the video which tells you how it helps. It has a note pad for every day so it you have a seizure note it and anything that was different that day. Give your neurologist permission to bring it up and he can view it along with it's graphs. It could help him come up with different dosages, medications and procedures that can get you seizure free..I hope this helpsJoe

Welcome to the

Submitted by just_joe on Wed, 2015-04-08 - 17:03
Welcome to the clubInteresting.At 15 you started having seizures. You never drink anything with  caffeine. But then at 15 you started to drink coffee. Coffee does have caffeine in it.As for tests and not getting answers you need to understand that a lot of the people in here have their tests com back normal and they have no reason or cause known. The EEG reads the brain waves coming from your brain. If it came back normal fine but you also need to know that it can only read to a certain depth of your brain. If the abnormality is deeper then the depth the EEG reads to then that might be why it isn't picking it up. Therefore it comes back normal. I had 20-25 all come back normal. As for ct scans or the MRI they just show what the brain is like. Which means there was deformation in the growth or any scaring or anything else that might cause an impulse to go off wrong.As for medications.... There are many other there and they all work. If your neurologist is asking questions and you aren't happy with the number of seizures you are having then tell him. For every question my neurologist asks me I have 1 for him, The only way I have gotten the number of seizures I was having down was to ask questions. Does this medication get my seizures controlled better then what they are now? Since I still have seizures is there anything else that can help control them better? Is there another medication that can be coupled with this one that can help get them controlled  better?  The doctors need to know what you want done. If you just answer his questions and not put any input in then the doctor thinks your not having problems so he keeps the medications and dosages like they are and sends you home.It may not be the caffeine at all since I drink a chit load of coffee and once the day is half over I then drink tea.hope this helps and you get the assistance you need Joe

Did you ever figure out the

Submitted by Fawnserelli on Tue, 2018-10-30 - 23:58
Did you ever figure out the cause?

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