It’s great to chat…but with Epilepsy we must remember we are all different
Chat rooms can be fantastic…for information-gathering, morale support from others who have similar circumstances as you, and just plain camaraderie amongst those who share a common bond. In the Epilepsy community, there are a few e-communities or chat rooms that are either popular or gaining some great interest by those who live in the Epilepsy world.
While this is all well and good, I truly think you have to be a bit skeptical and careful about everything you hear and read in some of these chat rooms. Don’t get me wrong, I think the support and camaraderie is fantastic, but if you are going into a site to try to firm up your opinion on say…whether or not you should have a Vagus Nerve Stimulator (VNS) implanted or if you should indeed switch your medication to a new and well-tested anti-seizure medication because your drug is no longer working, AND your doctor has already advised you to do so—you must be careful about who’s advice you take.
As I’ve been reminded SO often my my neurologist and my neurosurgeon, EVERYONE’S EPILEPSY IS DIFFERENT. Everyone’s brain is different. Everyone’s seizure pattern is different. So, my VNS is working quite well, if I give my opinion—an opinion, not advice–to someone about getting the implant (which by the way I have) in the end, their VNS might not work as well for them.
And, perhaps this is one of the reasons why we see and hear such negativity in the Epilepsy community?
3 Responses to “It’s great to chat…but with Epilepsy we must remember we are all different”
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Jeff Nelson
January 24th, 2010 at 12:13 pm
It’s good to hear what others have gone through on some of these sites. Along with being able to offer some support, it makes me feel better to know I’m not the only one who has to handle it. Maybe I like a ‘little’ sympathy I guess. After 20 years of dealing with E, I have seen that it is so true that everyones situation is so different. However, sometimes I feel I know more than the neurologists when they give me a shrug of “well….there is not much more we can do”. Of course I know that’s not the case, and that I can only offer what I have managed with myself. But, I always figure when at an E crossroads, it’s best to do as much research as you can (meaning not from E chat sites), listen closely to your body, mind, and heart……, ‘then’ your nuerologist before making any decisions. I always ask myself. How good is my life now, and how happy am I? Would my life be better if….? And, would I be happier if…..? I sit on these for a time before making decisions. If it’s a ‘maybe’, then I’ll do more research and go to my neurologist. But, it’s true that we must be a bit skeptical. As one of the most famed epileptics (Socrates) said, “Questions are more important than answers.”
Tabitha
July 1st, 2010 at 3:17 pm
Jeff, if you don’t mind me asking what kind of Epilepsy do you have? I’ve been suffering w/ JME (Juvenile Myoclonic Epilepsy) for about now almost 18yrs.
FREDA
May 1st, 2011 at 11:15 pm
LIKE MY DAD I HAVE HAD GRAND-MAL, SLEEP SIEZURES. FOCAL. PARTIAL, AND NOW COMPLEX WHICH HAS MADE ME SICK WITH WORRY. IT TOOK TWO YEARS TO GET MY DRIVERS LICENSE BACK AND IT WAS FAR FROM EASY!!!!!!!!!! THREE DAYS AGO I PARKED IN A WAL-MART I REMEMBER THE SMELL OF BURNNING RUBBER AND LIGHT FLASHING, MY BODY TINGLING. THE NEXT THING I KNOW 3 HOURS HAVE GONE BY AN I AM STANDING ON A MAIN STREET CORNER TWO MILES FROM THE WAL-MART I WAS AT. I WAS VERY TIRED AND DAZED WHEN I CAME HOME MY HUSBAND AKED WHERE I HAD BEEN SINCE I DID NOT KNOW MYSELF I TOLD HIM THE LAST PLACE I REMEBERED A FRIENDS HOUSE. MY HUSBAND HAS BEEN THROUGH JUST AS MUCH HELL AS MYSELF TRING TO COPE AND MAKE SURE I REMAIN SAFE, THE NEXT MORING MY HUSBAND ASKED IF I WAS OK, AND SAID I WAS ACTING A LITTLE OFF. AGAIN I COMPLAINED TO HIM ABOUT THAT BURNING RUBBER SMELL, HE WAS GOING ON A SHORT ERROR. BUT CAME BACK RIGHT AWAY DUE TO WORRY, JUST IN TIME TO FIND ME LEANING AGAINT THE ISLAND IN OUR KITCHEN SOBBING AND HAD URINATED ON THE FLOOR! SINCE THE WALMART ORDEAL i HAVE HAS TWO PARTIAL SIEZURES, MY SON FOUND ME A FEW HOUSES DOWN SITTING ON A LOW WALL IN MY pj’s JUST STARING AND MY HANS MOVING(THIS IS WHAT HE TOLD ME) then my husband found I HAD PUT A BOWEL, SILVERWARE, AND CUP IN MY PURSE! HAVE KNOW IDEA OR MEMORY ON THAT ONE! BUT MY POOR HUSBAND HAS BEEN WONDERING WHY DISHES ETC, HAVE BEEN MIA FOR OVER A LONG PERIOD OF TIME. WHICH BRINGS US BACK TO THE BIG QUESTION WHAT HAPPENED AFTER WAL-MART, I FOUND A RECIEPT IN MY WALENT FOR A TABLECLOTH I NEVER BROUGHT HOME, AND AM TERRIFIED TO THINK OF WHAT I MIGHT OF SAID OR DONE