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Wwelcome
Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.
There are great number and caring fellow members here to assist you. Our shouders are here for support in many ways. Sorry to hear about your situation. I have had epilepsy since I was 10 and it was hard to control. Mainly i was having petit-mals. At this time I am on keppra and lacmitcal but has you said the older I got the seizures got worst. I would suggest that you take B12 vitamin, it has helped me out through the years. Aviod bright flashing lights, like at a theater Iusually cover my eyes at that time. My thoughts and prayers are with you. Again welcome, looking forward to seeing you around. Darlene :hug: |
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I do take B12, My wife will beat me if I miss a dose. I have noticed that if I am in a room with florescent lights, I get that aura. I have to wear dark sunglasses in order to go to the VA hospital, folks probably think I'm just trying to be cool (I wish). I had to have cateract surgery done on both eyes back in 2009 and when they do that dialation, it gives me a fit. I have know idea what meds they will try next. I just know for sure the Levetiracetam ain't gona work. Thanks for the welcome, I'll be around. rlj1959 |
Hi rlj1959,
I can understand what you are going through I took Depakote for many yrs. for my absence (petit mal) and complex partial seizures and it worked great but just like you I had to go off of the drug because it lowered my blood platlet level to the point that I was almost bleeding internally. Since then I haven't found a single drug to help stop my seizures. I tried the lamictal and I broke out with a rash from the drug after taking it for only 4 days. I also took tegretol and trileptal and the same thing happened. You might want to try taking mysoline which breaks down into phenobarbital it works well for many people who have grand mal seizures. Also cut back on the carbs. and starch foods because it has been proven that to much of this kind of food will cause seizures. In regards to the light you may be photosenstive which means that certain colors can trigger seizures for you. I had a special e.e.g. done where they would flash different color strobe lights one at a time and they found that florescent green, amber, and bright white like the sun shining on the snow will trigger seizures for me. You might want to ask your Dr. to order this special e.e.g. to be done. You can also request a DNA test be done on you and by doing this the Dr. can find out what seizure med will help you the most with the least side effects. Take my word the Drs. don't like to do this because they are losing money from the pharmacies but you have every legal right to have this test done. Thank you for serving our country! I'm very proud of you and I sure wish I could have gone into the military but it was my epilepsy that stopped me. I have a lot of family that made a career of the service. One cousin served 41 yrs. Here's wishing you and your family only the best and May God Bless All of You! Sue |
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Maybe they can find something that will work without all these blessed side effects. Probably not but maybe. |
My husband had a Cavernous Angioma removed from his right temporal lobe. The surgery was successful in removing the angioma, but he gets 3-4 Temp lobe seizures a week ir not more, he is wiped out and sick to his stomach for days!
I tried to get him on disability, but since he's 41 they are giving him issues. But its sad, he is loaded on medications, sleeps alot! They dont want him driving, he is also depressed on 150mg of Zoloft. Any advice? We tried the diets mentioned. He has had seen many different docs, they changed up his meds many times, still sick with these seizres. Is anybody here on SSDI because of these type Temp Lobe seizures? Thanks! |
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Hi Rickey,
I'm working in a new medical study where they use different color lights such as sky blue to help calms the nerves along with different scents such as vanilla and lavender to calm the nervous system. I also have tried listening to music every day before work and by doing all of these things I have noticed a decrease in my sz. You might want to give it a try if you want to. Thanks for sharing the SSA Blue Book I greatly appreciate all of your help and support. Here's wishing you well and May God Bless You! Sue |
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I try to listen to classical music as often as I can, especially before going to bed. This seems to help. The keppra is causing some serious side effects such a rash on my leg that won't go away, it's causing me to get mad as a wet setting hen over the least little thing. I am going back to the neuro doctor next week to see what he wants to try next. He has got to do something, about one more screaming match with my wife over nothing will cause me to be a bachelor. Thanks, Rickey |
a believer
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light for the mind
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