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New here and looking for advice
Hello everyone. I had my first seizure when I was 18 years old, and after lots of testing they diagnosed me with epileptic and nonepileptic seizures. They decided to give me a VNS implant, and it seemed to help at first. I have basically lost all of my friends because I guess they could not put up with me having seizures. I was told I could not continue in the Athletic Training program in college, so I decided to take a break from school for a bit. I am now 25 and taking some online classes until I am ready to actually go to lectures. I am trying to be able to get classes done so that I can apply to nursing school. Anyways, doctors have come to the conclusion that they believe the seizures I am having now are nonepileptic. Is anyone else dealing with nonepileptic seizures?
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Nice to meet you!!
jazzbella, :Wave-Hello: It is great to have you come and be with us. You will find a great number of dear friends to listen and assist when you are in need of ears. You will find out we are supportive and relaxing place. I have had epilepsy since I was 10. I had a hard time being around children at that time, but when I reached my teenage years I discovered there were some great ones my aged who were great friends. I did go to college and never had a hard time making friends, if fact I met the man I am married to (41 years). There too you will fine some dear friends. I did have a VNS implanted, at first it seem to help, but I was able to get surgery which help me out more. I never turned the VNS off into the battery was going to be replace. The battery lasted around 8 years. My advice to you is to see an Epileptologist at an Epilepsy Center these Drs. specialize in epilepsy and can give you a few tests to find out what's going on and then they will put you on sz. (seizure) med to control your possible sz. I have been taking vitamin B12 1000 mcg. once a day and that has done a great job reducing my sz. You may want to give it a try and you can buy it right over the counter. One other thing is to stay away from bright flashing lights for they will cause a seizure. You will see this in theaters, just shut your eyes and turn your head. Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray: Darlene :hug: |
Hi jazzbella,
Welcome to the forum! Darlene has given you some great advice. My Dr. offered to give me a VNS but I decided to have the main brain surgery and it did a great job reducing my sz. (seizures) and I don't have to worry about going back in to have more done like I would have if I had the vns put in because they need battery changes every now and then. Just like Darlene the vitamin B12 does work really well for me also. Cut yourself back on carbs and starch foods and stay away from nutra sweet ex.diet soda it has been proven that nutra sweet can cause more electrical activity in a persons brain which in turn can trigger sz. You may want to get a 2nd opinion about the business with non epileptic sz. the only time that happens is if someone purposely causes stress for themselves and in turn the stress effects the hormones and will trigger a sz. for that person. Years ago when I was a kid that's why my Dr. thought was going on with me but I later had a video e.e.g. done where the electrodes were put directly on my brain and they found scar tissue and lesions in the right temporal lobe that were to deep for a regular e.e.g. to show and this may be what's going on with you. Ask your Dr. to do a spect, and pet scan on you along with a wada test these tests are very detailed and will show a lot more of what's going on and what could be triggering the sz. I wish you the best of luck and May God Bless You! Sue |
Hi jazzbella18,
I just came home from the Cleveland Clinic Epilepsy Center yesterday, and was diagnosed with Non-epileptic seizures, too, after a 5-day video EEG was done. I had 3 previous EEG studies that had yielded no diagnosis and only one Neurologist made a suggestion to combat them: take a daily multi-vitamin. These spells/ seizures did not end with the multi-vitamin, so that's what eventually led up to the most recent video EEG done in the hospital. I have no advice to give you, since this in brand new to me as well. I was told by the staff that there are cases where the epilepsy diagnosis is turned into non-epileptic seizures, like yours was, based on the failure of seizure meds to stop the seizures. I hope you and I will get answers for this diagnosis from those here who have been diagnosed and treated for this. Take care, M-i-m |
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