I need your help

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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

Re: I need your help

Submitted by GodivaGirl on Sat, 2007-06-30 - 13:58

#1. GodivaGirl #2. Age = 33, Diagnosed at age 5, got a bit of a break off meds age 12-16 , back on 'em from age 16 on, won't go off again. #3. Impact - not having a license impacts career moves. Would be in Technology Consulting. Believe I also wouldn't be unemployed. Also, would have possibly looked at certain areas in social services. Biggest impact is not having a license. Beyond that I don't let it impact anything #4. Medications - various throughout life. Since age 16 this is what I remember: Tegretol CR only (600mg 2 x day) -- worked well for a number of years, discovered seizures happened at night so they added in Clobazam as a relaxant Tegretol CR & Clobazam - 10mg @ night -- made me tired, but that was the purpose. Tegretol CR, Clobazam & Valproic Acid - valproic was added by a neuro where i went to university, dunno why, but it was useless. Tegretol CR, Clobazam, Valproic Acid, Lamictal -- this was as of summer 1997 (apparently over medicated, Changed from KW doctor to Toronto - hated Lamictal! -- Lamictal was added, new med to Canada, so it was more like let's try this! doctor forgot to consider valproic - over medicated me according to Toronto when I switched - made me drowsy & clueless) TORONTO DOCTOR: 1997-2002-ish: Tegretol CR & Clobazam (back to that) -- worked well, just outgrew & built up tolerance 2002 changed Tegretol CR taken away slowly - now... Topomax 100mg 2xday, Clobazam 2006 - now -- like topomax, less headaches while i'm on it, tough to adjust to though, made me feel rough. Topomax 100mg 2xday, Keppra 600mg 2xday, Clobazam 10mg night - keepra is a nasty med. wicked mood swings on that one - especially since i was on the pill as i started that - had to go off that & find a replacement, that was a pain! Also in there 2002 - Stress Counselling - this worked well, great perspective on life. #5. See # 4. #6. BEST - Stress Counselling - great way to find perspective on life. Either that or clobazam, great relaxant. WORST - Lamictal - started it right after university (where I spent lots of time partying)...had more seizures following a regular schedule & taking lamictal as dirrected than i did going out to bars & drinking vodka &/or malibu based drinks, still doesn't always make sense!

Re: Re: I need your help

Submitted by short circut on Sat, 2007-06-30 - 15:17

I had my license suspended and I read so many other people have also had their's taken away also. This really has a negative impact on a person's carreer, personal life and even mental health! I'm wondering if epilepsy centers offer free transportation to people with this disease. I see mini-buses for seniors driving around town so why not do something like this for people like us? I don't mean to sound mean, but a great many of us are in our most productive years, and unlike retired people, it is important that we have some way to keep being productive, tax paying citizens. We have a hard time doing this if we can't get from point A to point B. Try going to meetings in different parts of the city in the same day while figuring out the bus schedule. If you're a nonprofit organization there are ways to get vehicles donated. Car insurance and gas costs can be raised a variety of ways like through member donations and fundraisers.

Re: Re: Re: I need your help

Submitted by itsmyeviltwin on Sat, 2007-06-30 - 19:41

Hi Shortcircuit. I hear you and share similar frustrations as do many in this forum. It would seem to me we should be considered disabled and be able to receive assistance the same way as others too...but our disability is 'invisible' to others thus not considered a true disability in many ways. I also cannot drive and feel like a shut-in. My local transit system (Dial a ride)does not come out frequently to my rural area (they say they do, but when I call they always have too many visits scheduled already and cannot squeeze me in, I am too far out, etc etc) Being unable to work, I cannot afford cab service either. It would be nice if I could call a HandiTran as a backup, but they would likely give me an evil eye as they don't see me as disabled 'enough'.. Its a tough situation. I am finally to the point of acceptance and will get an attorney and seek disability once my waiting year is up. At least there will be a bit of much needed financial relief coming in then, since my family really misses my income. Best wishes...at least we can vent here to others who understand, right?