new.. hope is what i am holding onto

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JHhope

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A little history about me, I have been having seizures now for 14 years or so. I had my first seizure at the age of 14, a nocternal grandmal seizure in which I was the scariest moment of my life. I thought I was dieing and so did my sister. I could still hear her and and wanted to talk to her wanted to take control of my body...but I couldn't I could see flashes of lights and it was freaky. the next thing I new I was in the ER. They put me on Tegretol. I had a major allergic reaction to it. My body turned purple, I swelled unrecognizably, my skin peeled off, i had sores.... anyway I'm not sure why it took a while to figure this out? Luckily I only have these once every year or two just depends???

I also have these " dizzy" spells that feel like my depth perception goes completly away my balance is off I dont lose consiousness or anything. It goes away in5-10 sec. and always faster if i can deep breathe or focus on one object. I did have a video-eeg and MRI and I guess I have a spot on my right frontal area of my brain that they talked about poss. taking out that has seizure activity coming from it. that was swedish hospital in seattle and i moved a month later out of state and wasn't sure what to do esp. because surgery is risky. and the doctors where I live now dissagree??? But nothing has worked. What to do??? Anyone else have this? I am wondering what I am missing.
Anyway, I have tryed many, many diffrent meds and they for one reason or another they haven't worked. Right now I'm taking 200mg topomax 2/day which is hard on the memory! And I am just started to try Vimpat to see if that will work for me.
 
Hi JHhope - My daughter also began having seizures at the age of 14. The first drug she was put on was also tegretol. It cause vision problems which were not acceptable to us.
She then went on and tried three more, and finally I decided to try making some nutritional changes. It is the one thing that has made a difference. She is med free for two years now. She has now been three months seizure free. Her seizure control continues to grow.

She also has a heterotopia on her right frontal lobe.
 
Hi JHhope, welcome to CWE!

I hope the Vimpat helps for you. Have you been able to identify any triggers for your seizures? For some folks it an be food/diet-related, for others it's stress or fatigue or flashing lights. For me it can be low-blood sugar and/or aspartame among other things. If you keep a journal it can potentially help pinpoint some of these contributing factors.

I don't know if neurofeedback is an option for you -- you might want to look into it as a non-invasive, non-side effect approach to seizure control. (Check out the links under RobinN's name above to get more info).

Best,
Nakamova
 
You would think after 14 years of having seizure I would have my triggers all figured out but I dont think I do. I chose to try my best to ignore this part of my life the best I could for as long as I could. I guess you can only do that for so long. I got tired of doctors not having answers, not knowing how I got this... or knowing how to treat this...

I know one trigger is sleep deprivation, I know flashing lights bother me, I think aspartame might be one?? I am curious about foods and sugar?? I get headaches bleaches and toxic things but does everyone?
 
I feel the exact same feelings really numbing and balance off especially if I am walking at the time. I always know when they are coming on. Usually last 10-30 seconds. Cannot explain it and been on couple diff meds seem to help for a while then they just stop working. I am wondering about this VNS i have been hearing about anyone know anything about it.
 
Some people have found that the GARD diet helps reduce their seizures -- It stands for Glutamate and Aspartate Restricted Diet. Things like aspartame and MSG mimic glutamate and aspartate in the brain. Since glutamate and aspartate are "excitatory" neurotransmitters, anything that mimics or stimulates them can cause seizures if you have a low seizure threshold.

Another trigger for some folks is gluten, so a gluten-free diet can potentially help too.
 
How often does it happen to you? Is it random? I can also feel them coming on.
 
As someone

who has used the GARD diet, and now uses a more extreme form of it...because I am now a celiac patient. However, the diet does help control my seizures, so you might want to seriously look into it....

Welcome to CWE!
 
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