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I need your help

Wed, 06/27/2007 - 21:57
I am a student at the Medical University of South Carolina, and have been living with epilepsy since I was eight. I decided to make epilepsy a focus of a study, and hopefully I can use the members of this forum as my sample. This means I need as many responses as I can get! There is, unfortunately, no reward, but all you need to do is answer a few questions. When I'm done, I'll post the results. Hopefully it will be useful to everyone as a collection of opinions from people on this website, who not only live with epilepsy but share with each other their experiences and support each other in a way that people without epilepsy can not. If you do not wish to respond publicly to these questions, you can email them to me at donohuee@musc.edu. Thank you! Evan 1. What is your username? 2. How old are you and how long have you been living with epilepsy? 3. How has epilepsy impacted your life? 4. In which ways have you been treated? (This implies meds, surgery, VNS, diet, etc.) 5. Explain the effectiveness as well as adverse reactions of each treatment method, including each medication. 6. Choose the best and worse treatment option, in terms of seizure control and side effects, you have experienced, and include why. Thanks again!

Comments

1) itsmyeviltwin 2)5 months

Submitted by itsmyeviltwin on Sat, 2007-06-30 - 14:46
1) itsmyeviltwin 2)5 months diagnosed,age 51, likely had TLE much of my life,just never understood the symptoms so never diagnosed. 3) Completely. Lost career and driving privileges, head injury fron 1st TC causes wild mood swings, meds and injury cause significant cognitive deficits. I am struggling to cope with this 'new me' as is my husband. It is a real challenge. 4)Topamax 100 mg twice a day, support groups 5)Topamax controls my TC seizures well. I continue ?partials which unnerve me at times. Topamax has some side effects which I did acclimate to in time. I must drink extra H20 and gatorade daily to combat dehydration/tinglies and prevent kidney stones. Its a 'rash' drug...so I now get rashes,and acne again, had to switch all my skin, wash products and cosmetics to mild, fragrance and oil free. I take Folic acid supplements as Topamax depletes this in my body.Top 'wires' me so I had to quit caffeine, and I now need a sleeping pill to sleep. Top contributes to my forgetfulness and cognition deficits from my head injury. One good thing: It positively effects my headaches which is a nice side effect. :) All AED's have side effects so I tolerate these...other meds may be worse I figure. 6) I am only 5 months into this and topamax is my first AED so no good reference to answer this yet. I hope to limit my meds (avoid adding any more if possible..this may not happen) and in time I would like to learn how to control my triggers to reduce my partials. I learn a lot on this website from others. Good luck on your study and thank you for choosing this subject!

Re: I need your help

Submitted by rubbersoul on Wed, 2007-07-11 - 11:53
Thanks everyone for the responses! I still need more participants, so if you haven't filled out the questionnaire, please do! Thanks again!

Re: I need your help

Submitted by jacky99 on Thu, 2007-07-12 - 01:44
1. Jacky99 2. I'm 22 and was diagnosed when i was 11 with absence epilepsy, and now have the occasional GM along with numerous simple partials 3. I can no longer drive because i had a seizure while driving once, and no alcohol, i get some serious headaches, my short term memory is shot and i have problems with word retrieval and generally space out during conversations because i forget what im talking about while im saying it (very short term memory) thus leading to some serious frustration 4 & 5. I was prescribed Valproic Acid originally but asked to be taken off of it because of side effects id rather not disclose. i'm now on tegretol (carbamazepine), it is controlling my seizures for now although ive had to have the dosages increased to control the auras and partial seizures that were happening more often. my side effects on this medication is drowsiness, sensitivity to light, nystagmus, jerking limbs... thats basically it really 6. i like taking the tegretol more although ive had a wider array of side effects than the valproic acid. its actually because of what the valproic acid did to me and i had more GM while on valproic acid than i do on tegretol. i can handle the partial seizure but the GM drive me crazy hope this helps :)

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