Hello to all. On April 21st of 2010 I was on my lunch break from work. I remember feeling really tired and being very out of it. The next thing that I can remember I am on a stretcher looking up at a Paramedic. I asked what happened. He said I had a seizure and wrecekd my truck into the front of the grocery store. I hit 2 other cars and seriously injured another woman. That was the first time i had ever had a seizure in my life. They told me go 6 months without a seizure and Id get my license back. August comes around and Im cooking some lunch. Next thing I can remember I wake up on the tile floor in a puddle of blood. Split my forehead open, on the floor I guess. Forgot I was cookin and got in the shower and almost burnt the dam house down. September comes, have 2 more gran mal seizures. Have Another one on Halloween and another at the first of December. January passes seizure free. My Dad calls up and says he has two tickets to Daytona. So we go to the race and I have another gran mal seizure before the race even starts. March goes by with no episodes. Last wednesday Im Riding in my Dads truck on the way home. My mind goes blank and my right hand and arm go numb and I feel like Im going to have a seizure, but dont have one. Not too sure what was up with that. Sorry for the long post. Im 25 years old and this has thrown one hell of a loop in my life and need someone to talk to about it.
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- Thread starter BigWill
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Hi BigWill, welcome to CWE!
You've come to the right place. CWE members have collectively seen it all when it comes to epilepsy. Feel free to explore the different forums here, and to ask questions and chat.
Are you on medication now to control your seizures?
Best,
Nakamova
You've come to the right place. CWE members have collectively seen it all when it comes to epilepsy. Feel free to explore the different forums here, and to ask questions and chat.
Are you on medication now to control your seizures?
Best,
Nakamova
Yes I take 1000mg of Keppra and 50 mg of Topamax when I wake up and 1000mg of keppra and 100 mg of topamax when I go to bed. My Memory is pretty much gone, I can only remember major things that happen throughout the day. I hate it also when I see someone I went to school with or someone I havent seen in a while and they recognize me and call my name and I cant remember their name at all. And the driving thing is killing me too. Havent been able to drive in a year and havent had a job in about 8 months. The only thing I usually do is sit around the house and its really startiing to get to me. I really want my life back
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Some or all of the memory issues are most likely caused by the meds. Topomax is called "Dopomax" for a reason... Keppra is known for affecting moods too, so if you feel like your personality has changed you can blame the Keppra. Some folks have found that a B-vitamin complex helps with Keppra side effects, so you might want to try that (with your doctor's okay).
The most recent "numbness" you experienced might have been a partial seizure that the meds stopped from generalizing into a tonic-clonic. Any idea if you have any particular seizure triggers? Some common ones are fatigue, low blood sugar, dehydration, fever or infection, food sensitivities, flashing lights, etc. Keeping a seizure journal can potentially help identify a trigger. More info on journals can be found here: http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/
The most recent "numbness" you experienced might have been a partial seizure that the meds stopped from generalizing into a tonic-clonic. Any idea if you have any particular seizure triggers? Some common ones are fatigue, low blood sugar, dehydration, fever or infection, food sensitivities, flashing lights, etc. Keeping a seizure journal can potentially help identify a trigger. More info on journals can be found here: http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/
I used to would feel somewhat "funny" about 2 days before I had a seizure. That was before I started taking the topomax. I didnt start taking it until December. Now I dont feel that anymore, the seizure in Feb. just hit me while at the race track and the incident in the truck just hit me a few minutes before we were going to pull up in my drive way. I also forgot to mention that I had/have a Hematoma when I was a new born. If you dont know, that is where you have a bruise on your head and it gets infected underneath the skin and they ended up cutting a portion of my "would be" skull out so I have a dent in my head lol. I personally think that Is what is the cause of this whole mess. No one in my family has epilepsy or any disease that causes them to have seizures so I dont see how it would be hereditary
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Yes, often a scar or lesion can be the cause. I had a very bad concussion when I was 5 which they think was the cause of my seizures 30 years later. But I also know that specific triggers for me are fatigue, low blood sugar and aspartame, so I try to avoid those.
I have an appointment at Shands Medical Center on May 12th. Im hoping I will get some answers there. My Neurologist is a good guy and all but it seems like his solution is always "take another pill" or here take this xanax for a few days. He never really got in depth with anything other than the ct scan and the mri and eeg and putting me on the medication.
big will
I am with you on being frustrated, and wishing this would all go away. I started having seizures 4 years ago that had me totally drained. However, it took 3 1/2 years to get any doctor to listen to me, and a 25 minute drive that I don't remember, complete with people calling 911, and law enforcement after me. I did not crash, and think someone must really love me, as the doctor does not know how I managed to go that far without an accident. It sucks not to drive. The first 6 weeks were like a miracle-I felt like I woke up from a bad dream. Then I started getting hives and rashes. I have tried 4 meds, and I feel awful. I am having seizures, and so moody I cannot stand myself. I really hope this all gets better. I have the motivation of a snail right now, which is not working well for me, as I have a business to run. I am happy to know what the problem is, but am so disappointed in how bad I feel. I hope you fell better soon.
I am with you on being frustrated, and wishing this would all go away. I started having seizures 4 years ago that had me totally drained. However, it took 3 1/2 years to get any doctor to listen to me, and a 25 minute drive that I don't remember, complete with people calling 911, and law enforcement after me. I did not crash, and think someone must really love me, as the doctor does not know how I managed to go that far without an accident. It sucks not to drive. The first 6 weeks were like a miracle-I felt like I woke up from a bad dream. Then I started getting hives and rashes. I have tried 4 meds, and I feel awful. I am having seizures, and so moody I cannot stand myself. I really hope this all gets better. I have the motivation of a snail right now, which is not working well for me, as I have a business to run. I am happy to know what the problem is, but am so disappointed in how bad I feel. I hope you fell better soon.
Thankyou for the kind words.I hope your situation gets better as well.I have a spot on my arm that developed about 4 months ago, it looks like chicken skin. Is that from seizures and or medication? Its in a circle and has about a 2 inch radius. Its the only spot that I have it at.
Welcome and you will get lots of help here.....
I have had eeg done and they all come back abnormal, if they ever came back normal i would be ........... I have had other test and they all normal, so i do not relie on test that much. I have had this all my life ( over 50 years) and have never drove, would never want to drive, would be afraid of killing myself or someone else.
At this point i take 3 meds every day ( keppra, zonegram, lamictal), have tried alot of them over the years. Some of my triggers are flashing lights, not enough sleep, blood pressure, caffine ( that hard to give up ), etc. Try many meds for getting sleep at night but my meds counter act them.
Did get test for brain surgery ( not canidate). Spots may show up cause of different meds, depends on the person.
I have checked on my history to see who had seizures in my family. I am the only one at this time and i trace all the way back to one of the pilgrim. So people can have epilepsy and no family every have it. I have no idea when my seizures are coming on, i know i had a seizure when i come out of it.
I have had eeg done and they all come back abnormal, if they ever came back normal i would be ........... I have had other test and they all normal, so i do not relie on test that much. I have had this all my life ( over 50 years) and have never drove, would never want to drive, would be afraid of killing myself or someone else.
At this point i take 3 meds every day ( keppra, zonegram, lamictal), have tried alot of them over the years. Some of my triggers are flashing lights, not enough sleep, blood pressure, caffine ( that hard to give up ), etc. Try many meds for getting sleep at night but my meds counter act them.
Did get test for brain surgery ( not canidate). Spots may show up cause of different meds, depends on the person.
I have checked on my history to see who had seizures in my family. I am the only one at this time and i trace all the way back to one of the pilgrim. So people can have epilepsy and no family every have it. I have no idea when my seizures are coming on, i know i had a seizure when i come out of it.
RobinN
Super Mom
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Hi Will... welcome to CWE
I approach this from a different point of view. Bear with me. I say that you were seizure free for approx 25 yrs of your life. Something lowered your threshold. I understand that you had surgery as a child.
My daughter has a heterotopia on her front lobe. She was seizure free for the first 14 yrs. The heterotopia was pointed at as a cause for my daughters seizures. However, it never made sense due to the fact that she was seizure free for 14 yrs.
We tried medication, but the seizures were increasing and the side effects not acceptable. Quality of life decreased dramatically. So I looked at alternatives.
My original instincts were that diet / nutrition was involved. I also journaled and realized that hormones were also involved. The research I did linked the hormone imbalance to the nutrition.
My daughter is now med free, and seizure free because I have helped to find ways to raise her seizure threshold. She will always have the heterotopia, but her body seems to be able to remain seizure free regardless because we are improving her overall health.
treatment: nutritional changes, vitamins and minerals for brain and body health, neurofeedback
I approach this from a different point of view. Bear with me. I say that you were seizure free for approx 25 yrs of your life. Something lowered your threshold. I understand that you had surgery as a child.
My daughter has a heterotopia on her front lobe. She was seizure free for the first 14 yrs. The heterotopia was pointed at as a cause for my daughters seizures. However, it never made sense due to the fact that she was seizure free for 14 yrs.
We tried medication, but the seizures were increasing and the side effects not acceptable. Quality of life decreased dramatically. So I looked at alternatives.
My original instincts were that diet / nutrition was involved. I also journaled and realized that hormones were also involved. The research I did linked the hormone imbalance to the nutrition.
My daughter is now med free, and seizure free because I have helped to find ways to raise her seizure threshold. She will always have the heterotopia, but her body seems to be able to remain seizure free regardless because we are improving her overall health.
treatment: nutritional changes, vitamins and minerals for brain and body health, neurofeedback
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Thats what I am trying to figure out and what I really dont understand. If the surgery on my head is the reason Im having seizures, then shouldnt I have been having them all my life? Why would they wait 25 years to show their face?
I really cant wait for this appointment I have because Im not leaving there until I get some answers and perhaps new treatmeant options because I am fed up with taking these mind erasing drugs. Sometimes it gets so bad ill get up to go to the kitchen, ill get there and forget what i went there for. I do think its funny that I can remember that I forget things :roflmao:
Thankyou for your insight, I am definately going to be asking about diet/nutrition etc.
I really cant wait for this appointment I have because Im not leaving there until I get some answers and perhaps new treatmeant options because I am fed up with taking these mind erasing drugs. Sometimes it gets so bad ill get up to go to the kitchen, ill get there and forget what i went there for. I do think its funny that I can remember that I forget things :roflmao:
Thankyou for your insight, I am definately going to be asking about diet/nutrition etc.
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Will,
I started having seizures when I was 23 years old and have no history of any head injury, meningitis, encephalitis, etc. Mine started as CP and progressed to TC and was seriously burned when I had my 1st TC seizure. I've tried 11 meds, had a Left Temporal lobectomy, to no avail- actually made the seizures worse, and now have the vagus nerve stimulator, which has helped. I also have a terrible memory problem now, so I have to write lists and post it notes. I forget names of people I see daily, but it comes back in a few moments, and suffer from aphasia, I just can't think of the right word mid-sentence. I still have to take Keppra-3000mgs, and Topomax - 500 mgs. a day.
And yes, it is a B***H, not being able to drive!!
I also suffer from Type 1 diabetes, so I have to give myself insulin shots 5 times a day along with taking my AEDs and poke my fingers numerous times a day, checking my glucose levels. So I do closely watch and monitor my diet.
I hope you find some answers.
I started having seizures when I was 23 years old and have no history of any head injury, meningitis, encephalitis, etc. Mine started as CP and progressed to TC and was seriously burned when I had my 1st TC seizure. I've tried 11 meds, had a Left Temporal lobectomy, to no avail- actually made the seizures worse, and now have the vagus nerve stimulator, which has helped. I also have a terrible memory problem now, so I have to write lists and post it notes. I forget names of people I see daily, but it comes back in a few moments, and suffer from aphasia, I just can't think of the right word mid-sentence. I still have to take Keppra-3000mgs, and Topomax - 500 mgs. a day.
And yes, it is a B***H, not being able to drive!!
I also suffer from Type 1 diabetes, so I have to give myself insulin shots 5 times a day along with taking my AEDs and poke my fingers numerous times a day, checking my glucose levels. So I do closely watch and monitor my diet.
I hope you find some answers.