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Old 07-16-2012, 10:37 PM #1
kaitlynh2012 kaitlynh2012 is offline
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Question New to the site... Have some questions, anyone able to help? :)

Hi guys, so, I am new to this site, and still fairly new to being epileptic, I was diagnosed on Christmas Eve 2011 after having a seizure at a party October 30, 2011. It has been 8 months for me being epileptic and I don't feel like I have learned any helpful information. My most taunting question I have is why I have epilepsy and what kind I have, my doctor and my neurologist tell me that I will never be able to figure it out, but I see that many people have found out at least what kind they have. Is there any specific ways to go about finding that out? Another question is, I have heard that alcohol can contribute to seizures, but is it possible that it can make a person epileptic. The reason I ask that, is because I was drinking earlier, before I had the seizure.
Almost two weeks ago now, my neurologist informed me that the reason for my EEG that was a week ago today, was to see if I still have any abnormal activity showing. If I don't then my doctors would then decrease my medication slowly until I am no longer on the medication, then redo the EEG and see if the same is true again. I guess what I am asking is, how is it possible for someone to only be epileptic for 8 months, what could have possibly triggered it? I did nothing out of the ordinary, nothing changed in my life until that night. That is the most mind boggling thing to me.

Thank you to all that can help!
Kaitlyn
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Old 07-17-2012, 08:11 AM #2
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Hi kaitlyn,

Welcome to the forum! I've had epilepsy for 40 yrs. and take my word your Dr. needs to do more than an e.e.g. on you to find out what's going on. The neuro should also do a CAT scan, MRI, and a PET Scan and SPECT scan these tests will show for sure what is going on in your brain and if you are having sz.
Alcohol, drug abuse, trama, stress,lack of sleep, difficulty at birth like lack of oxygen, a bad blow to the head, or a bad scare are the main things that can cause epilepsy along with family genes herditary, Also a high fever. If any of these thing relate to you it could be causing sz. for you.

My best advice to you is to see an Epileptologist at an Epilepsy Center. You can find them at University Hospitals or really big hospitals. An Epileptologist specializes in epilepsy and knows a lot more than any neuro I've ever seen.

I personally don't feel that the Dr. should take you off of any meds until they know for a fact that you don't have epilepsy. That could be to risky for you.
Hormones changing every month in a woman can often cause sz. because the progesterone level drops and the estrogen level goes up estrogen causes more excitment while progesterone calm the nerves.
The next time you have an e.e.g. as the Dr. to do a special e.e.g where the flash different color strobe lights one at a time this will show if you are photosensitive meaning certain colors are triggering sz.
If you are around a lot of people using cell phones or if you use a cell phone and a sz. starts up you may be cell phone sensitive. This is what I found out this past yr. Cell phones were triggering sz. for me do to the frequency they are in.
Cut back on starch foods and carbs. and stay away from nutra sweet this will cause more electrical activity in the brain and trigger sz. for many people I found this out after drinking diet soda.
Try taking vitamin B12 1000 mcg once a day and this should help you. I wish you the best of luck and May God Bless You!

Sue
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Old 07-17-2012, 08:01 PM #3
kaitlynh2012 kaitlynh2012 is offline
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Thank you Sur for your input.
I guess I should of put that my doctors sent me for a CT scan at the start of December and nothing showed up. But when I was sent for an MRI, they found a gland at the back of my brain, but they feel it has nothing to do with epilepsy in the slightest, therefore they are choosing to just keep an eye on it with follow up MRIs yearly.
I personally have never heard of a PET scan or a SPECT scan. Where I live, there are no Epilepsy hospitals or doctors specializing primarily in epilepsy, so I am unsure if those scans are even an option in my province. My doctors have never brought them up to me.
I personally have only known to have one seizure, but has been diagnosed as epileptic because I had 2 abnormal EEGs. I'm trying to figure out how figure out what works for myself and what doesn't, in concern with my medication. (topamax) foods don't agree with me like they used to, do thank you for the advice with the starches and carbs.
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Old 07-18-2012, 01:56 AM #4
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Kaitlyn,

Hello and welcome each of you to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

Sue has given you some great things to go by. I have had epilepsy for over 40 years. I will add to Sue's advice, try to stay around bright flashing lights, like a theater movie. Any time there as the bright lights flash just close your eyes and turn your head.

Keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Old 07-18-2012, 08:24 AM #5
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Hi Kaitlyn,

I don't have any Drs. in my area that specialize in Epilepsy so I go way out of town (103 miles one way) to an Epilepsy Center and they have done wonders for me.
I tried the drug topamax it it didn't help me at all. What you can do is ask your Dr. to do a DNA test on you all they have to do is take some blood and some salvia from your mouth and they can match your DNA up with the best med to help you with your epilepsy and the drugs will have the least side effects. I tried at least 11 or more different meds before I had the DNA test to find what med would work the best.
Your family Dr. can order a PET scan or a SPECT scan these test will show a lot of detail of what's going on in your brain and what is possibly causing the sz. This test shows more than an e.e.g. or MRI and it will show the areas of your brain where there's any possible problems.

Here's wishing You Well and May God Bless You!

Sue
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