Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Advise Sort
Sun, 05/30/2004 - 05:27Topic: Family & Friends
Hi, I was first taken in a seizure 30-Jan-00 but never knew what it was, no doc has diagnozed me as having epilepsy. Yet I started taking my medicine 02-Sept-03 (Carbamazipine & Phernobabitone) I have recorded great success nonethelesss. Nowadays it all starts with things like stress at work and I would become uncontrollable and easily irritable. I rarely convulse. I may need advise from members on how best I can have my situation addressed. Expert medical attention still far away from being a reality in my third country ZAMBIA
Comments
RE: Advise Sort
Submitted by tibet2 on Tue, 2004-04-13 - 14:05
hello! it's great to hear from you! your plan for organizing a forum on epilepsy sounds great. there are many myths everywhere about epilepsy. africa is not alone in having misunderstandings about epilepsy! you are right - the solution is both local and international. we need to act at the most basic local level as well as the international level. let me know if there is anything i can do to help. if your computer time is limited and expensive i can run some searches for you. my computer time is limitless and "flat rate" so it isn't a problem and i very much enjoy researching neuro topics. music and art are great stress relievers. congratulations on the album! i'm going to include the site of an artist with epilepsy. contact her directly if you are interested in using any of her work for your presentation. she is very generous with her work. she has "illustrated" some of the visual hallucinations that some people with epilepsy have. http://inside_out_graphics2.tripod.com/juderouslin/index.htmlmany of us (people with epilepsy) think that epilepsy.com is the best site going for general knowledge about epilepsy. i don't know how detailed you want to make the information in your presentation. you will need to keep things general enough to hold people's attention, yet have enough knowledge reserve to answer questions ;-)here are some articles about epilepsy in zambia. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14728612http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12686404maybe you can contact g.l. birbeck and find out more of what she has found in zambia. the door to door survey is very current, published in 2004. from her you might be able to contact kalichi.on a personal note, don't worry too much about not having tests like an EEG or MRI. if it is possible to get them, then that is great. but epilepsy was diagnosed for centuries without tests like those. (that's not to put down the value of a test - just to put it in some persective.) i had not had a scan in over 25 years. and have recently had an MRI which showed no abnormalities. i have had 3 or 4 EEGs in the past quarter century, all of which have been normal. seizures are sometimes are very shy about showing on tests. best of luck with your forum.
RE: Advise Sort
Submitted by cmushibwe on Wed, 2004-04-14 - 03:09
Hello,Thank you once more, it is of great encouragement hearing from you.I have looked up all the sites you included in the message except the one you said refers to an artist with epilepsy ://inside_out_graphics2.tripod.com/juderouslin/index.html which my browe can not locate. Could you please check that it is the exact site and I will contact her and see what insightful advise i can get from her.i will always get in touch with you and give you information on the planned forum. I may tell you where your help could be needed.Good day,CHAD
RE: Advise Sort
Submitted by cmushibwe on Tue, 2004-04-13 - 09:34
Thank you Tibet2 for your insightful response. I have actually visited the sites you included in your mails and it has enhanced my knowledge of and about the disease. As you wondered if the person to solve some of africa's problems might be a person with epilepsy.... I am preparing myself to address my local community on the myths and truths about epilepsy. I am still gathering data to help me organise such a forum. I am lover of music, and this has helped me very much in dealing with stress. Soon, I will be releasing an album talking about hope and plans are underway to call as many persons with the diseases or those relatives with people having the disease. I would this in conjunction with the local psychiatry/mental clinic and I hope to share the knowledge I have so far acquired with everyone here.Africa needs just that, we are yet to make headways, the solutions lie with ourselves and the support of the international community.________________________Nice to hear about sunny San Franscisco, I will write to you and tell you a little more about my beautiful Zambia