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new to site seizures for 2 yrs still no answer

Mon, 02/20/2006 - 00:52
hi. this is by far the best site i have come across. Was looking up a google search for "nutritionalist for seizures". heres my story: started 2 years ago after a brief relaxing walk. my left arm went numb, my left side of face numb, felt really dizzy, couldnt see out of my left eye. followed up with a dr appt. dr thought it was just heat stroke. so i left it at that. then noticed a few weeks later, just so tired all the time. went from being fit and active, loved riding my bike and running.okay so this tiredness continues but now the face really feels like its drooping, start slurring my words, catch myself drool at times. as you all know it can take months to get into a drs office. then months for a referral for a mri or eeg or anything. so i see how two years have gone by so fast now. i then had episodes of zoning out, my left hand curled up, arm still numb and face. had mri, eeg, ekg because doc thought might be a heart thing, xray of the neck,and all test come back normal. the neurologist and my primary doc agree now that it is not migraines but partial seizures. i cant take any meds becuz i feel so much worse. i am doing a 72 hrs eeg at home test this weekend feb 24-27. this should tell them what type of seizure? so they can give me the right meds? becuz my doc is putting out of work for a few months so we can keep trying different meds. my question is. should i keep taking them even if after one pill i barely can wake up and when i am awake its worse than going thru an episode?..he seems to think i just havent given any meds a chance. i have read online about surgeries, has anyone gone thru one to help prevent seizures? and if so, did it all turn out okay? I thank you for your time and understanding.i just want my normal life back..

Comments

Re: new to site seizures for 2 yrs still no answer

Submitted by spiz on Mon, 2006-02-20 - 01:48
Hi 2life! The number one thing to remember about seizure meds, is that when first starting them, they make you want to hibernate and are likely to make you feel spacey and nauseous for awhile. Read the insert that comes with the meds under possible side effects and rare side effects. You should read the whole insert. It helps you to know what to expect, to a certain degree. Being that everyone's systems are different, it would be hard to pinpoint every symptom, but it'll give you a good idea. If your medication didn't come with an insert, look it up on the web, or on the E.com site. I'm sure if you post the med(s) you are on and are having difficulty finding information on it, someone here will help you find the link. The different tests ran don't always supply answers, so don't be discouraged if yours come back normal. ( In a perfect world...that is good!) But tests made by machines aren't all the doctors go by. What you are going through now is the frustrating part, but hang in there! I've never had any of the surgeries, but there are many on here who have. And there are those who have posted their stories on the E.com site. You need to finish the first steps of testing before considering this aspect though. From what I understand, there are qualifications you have to meet to be considered. I'm just not wanting you to get ahead of yourself and possibly be disappointed. Here is a link that has alot of answers to questions you may have: http://www.epilepsy.com/epilepsy/research_articles.html I hope it helps! Good luck! -Spiz

Re: Re: new to site seizures for 2 yrs still no answer

Submitted by 2life on Mon, 2006-02-20 - 01:58
OK.THANKS.FRUSTRATING,YES.BUT STILL HOLDING ON TO HOPE..

Re: new to site seizures for 2 yrs still no answer

Submitted by scorpio on Mon, 2006-02-20 - 13:14
You have not said what med you are taking, or how much. Different meds not only are more, or less, effective controlling different types of epilepsy but individuals' reactions to them vary a lot, even if they have the same type. Also, some people are more tolerant to particular side-effects than others and can take a larger dosage of a med before the side-effects become intolerable. You may fortunate in being able to have the epi controlled on a low dosage of a single AED, like me, but you have to find it first! A certain amount of trial and error involved here I'm afraid. I hope you find something suitable in the not-too-distant future. Chris

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