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#1
06-01-2005, 08:36 AM
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need to vent, need some ideasO.k. People after everything that I have been through... surgery, VNS , every med out there, I'm still not under control. Now, I feel bad complaining because the seizure that I do have are not bad at all. Most people wouldn't even know it was happening unless you knew me well. Half the time I'm confused about if I'm having seizures or not. This is my problem... At the moment I'm only on Dilantin 300mg a day. The Dilantin takes care of the complex partial ( the ones that I " check out " for a minute ) it doesn't control the simple partial. The simple partial are happening a few times a day now. The make it so that I can't think straight and it is very hard to carry on a conversation. Sometimes afterwards I get goose bumps and my whole body shakes ( like I have the chills or when you have a high temp) The Dilantin make is so hard for me to talk, I will be in mid sentence and then I will lose what I want to be saying or what something is called. I'm a grown women and half the time I'm pointing at things and saying " you know that thing over there" Now, Felbatol control all of this stuff and I have always considered it to be my miralce drug. The only problem being since the VNS I can't take it anymore, it causes me to have GREAT pain in the back of my neck and my shoulder blade. Not to mention the headaches that not only sit in my temple but run down the left side of my face. The other drugs that work for me are Zonegran and Lamictal, but they both cause this pain that I talk about. Trilepal and Neurontin work well, but both made my hair fall out and I gained 40 +pounds ( I'm not willing to be fat to get rid of my seizures, I'm a very vain women!) Keppra worked GREAT, but I got one infection after another on it,( UTIs and yeast infections) and messed up my hormones big time. Most of the rest of them, made me have more seizures. ( Topamax, Zortin, Diamox and there are more) Sorry this is so long, I guess my question for some of you is this. Do you think that there is something that I could take for this nerve pain, or that there is some way to fix this pain, so that I could take one of these meds that work for me? I just feel like there is no way out. I'm dambed if I do and dambed if I don't. All I know is I quoted two wallpapering jobs yesterday and I couldn't even think straight, let along talk.
__________________ seizure since age 12, focal resection 1992, VNS 2002 removed 2003. Lamictal 400mg, Topamax 100mg daily.     |
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#2
06-01-2005, 11:42 AM
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| Hi Elisa, Stacy went through the same thing some time ago. It was as if she was living in a foggy haze. It's not a good place to be. Stacy had excellent results with EEG neurofeedback. She eliminated all simple partial seizures for over 8 years. She started having tonic-clonic seizures again after the delivery of our first child, but the simple partial seizures didn't return until she started on Dilantin to control the tonic clonic seizures. Neurofeedback also helped improved her memory recall and critical thinking. I've also heard good things about the Andrews-Reiter clinic in California.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback Would you like to help support this forum? |
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#4
06-01-2005, 03:38 PM
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| Lindy- I stopped taking all vitamins because I was having more seizures on them, then off them. The days that I take vitamins I have 2 or more seizures. I was taking a calcium + ( Calcium, magnesium, A, C, D,IRON) VITAMIN B-12 flex-seed oil vitamin K 1mg of Folate ( still taking that, and sometimes take one of the calcium+) I have found on a whole most things that I put in my body MAKE me have seizures. That includes most anti-epileptic drug's as well. I called today and I'm going to start taking Gabitril again. It should help get rid of the left sided pain. I also went and had a message today and that always helps lots. Just very pricey. And the pain relief is short lived.
__________________ seizure since age 12, focal resection 1992, VNS 2002 removed 2003. Lamictal 400mg, Topamax 100mg daily. |
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#6
06-01-2005, 07:13 PM
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| I dont't believe that it is the folic aid, It is one of the others. I think that it is the B12 that causes the seizures. vitamin C seems to cause seizures for me as well. I know, that is abnormal. I never follow the "rules" E
__________________ seizure since age 12, focal resection 1992, VNS 2002 removed 2003. Lamictal 400mg, Topamax 100mg daily. |
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#8
06-02-2005, 09:06 AM
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Folic AcidQuote :
There's lots of good info on that page.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback Would you like to help support this forum? |
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#9
06-02-2005, 03:41 PM
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| Lindy, to answer your question about Folic acid. Yes, my doctor wrote me a script for the Folic acid 1mg. oh, I didn't take the Folic acid last night, but I did take the B12 today and guess what? I had a seizure. I know that the B12 has something to do with my seizures. I'm going to stop taking everything all together, and see what happens. E
__________________ seizure since age 12, focal resection 1992, VNS 2002 removed 2003. Lamictal 400mg, Topamax 100mg daily. |
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#10
06-16-2005, 03:41 PM
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| Folic Acid is often prescribed alongside an anti-epileptic drug, because anti-epileptic drugs can prevent your system from absorbing it or drain your system of it, the same way that they can often interfere with the metabolism of calcium. Even if you eat 6 spinach salads a day, that won't make up for the folic acid that your system may be losing. (Yet another reason to try and get off anti-epileptic drugs altogether). As for the B12 being the culprit, it might be, but it's sometimes the case that the brain gets ready to seize up to 48 hours prior to the actual event.So the cause, trigger or contributing factor, may not be the same day as the seizure... |
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