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Old 07-06-2003, 08:27 AM   #1
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Post How long does it take to get help

Since March 31 03 I have been having what my family DR thinks is partial simple seizures. He has sent me to a neurolagest and he says he doesn't think that is what I am having? I just got home from the hospital after a 1 wk stay and had a video eeg done and another mri can any one tell me what they have exper. with partial simple seizures.

 
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Old 07-06-2003, 09:12 AM   #2
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Hi,
When I have a simple partial seizure I often get a funny feeling in the pit of my stomach that feels like butterflies and then I begin to see colors flashing back and forth from one eye to the other. When this happens I tighten up all the muscles in my body and make my hands into tight fists by doing this it will often stop the seizure. My neurologist I had back in the 1970's taught me this and it has worked great.
I have found after 31 yrs. of seizures that I get better help seeing an Epileptologist who works at a hospital or university with an Epilepsy Center. An Epileptologist deals only with epilepsy and I have found them to be way ahead of many neurologist I have seen, plus they give me fewer meds to take to control my seizures.
I have both complex partial and absence (petit mal) seizures. I've had 2 brain surgeries to reduce my seizures and I'm now looking into a new type of surgery called gamma knife surgery where they don't even have to cut into your head they use radio waves (gamma rays) to destroy scar tissue on the brain and it won't damage the healthy brain tissue.
Whatever you do stay away from nutra sweet (aspartame) ex. diet soda. Aspartame can cause more electrical activity in the brain which can cause seizures. I found that out the hard way after buying 2 liters of diet soda and having many seizures afterwards.
Here's wishing you only the best of luck and May God Bless You.

Sue

 
Old 07-08-2003, 08:20 AM   #3
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thanks for your reply

 
Old 07-08-2003, 08:30 AM   #4
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I suffer from Cateminal Epilepsy and I have a conbination of 'Partial' daytime szrs and 'Grand Mal' night time.

I often find the 'partial' szrs are worse to recover from. the initial feeling feels like I have an elastic band around my head - I then get an incredable feeling of fear and de ja vue - then everything goes incredably bright and voices are far away my sight becomes patchy and then lose all concept of day, time and how long I have been like it.

It is not plesant and I cannot suggest any remadies other than trying to tell yourself it is OK and you know what is going to happen (that comes with practice).

I do tell most people I have not found any stigma and people are so kind and supportive and at least they know what to do if I space out @ work or when I'm with friends.

I live in the UK and I have suffered from Epilepsy for 15 years - I was not put on any medication until I had my second 'grand mal' szr

Hope this helps

Lots of love

 
Old 07-08-2003, 09:47 AM   #5
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thanks grumps every little bet of info helps it sounds like the same in some ways i realy appr. the help

 
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