Guestbook

I viewed your gustbook and think that you have a really good thing going. I was diagnosed with epilepsy when I was 5 years old and was put on many barbituates. I was taken to see neurologists in Morgantown,WV, Pittsburg,PA, Cleveland
lou <lu@iolinc.net>
WV USA -

TODAY IS DECEMBER 30,1998. AND I HAVE BEEN READING THE POEMS AND STORIES ABOUT ALL OF YOU. I AM A SURVIVER AND CAN RELATE TO WHAT EVERYONE IS GOING THROUGH. MY GRANDMOTHER IS TYPING THIS FOR ME AS MY LEFT ARM DOES NOT DO THE THINGS I NEED TO DO.I AM A TBI SURVIVER AND I ALSO HAVE BEAT ALL THE ODDS AND I AM ALIVE!!! I AM TRYING TO LEARN TO WALK AGAIN. I WAS IN AN AUTO ACCIDENT AND IN A COMMA FOR SEVERAL MONTHS.I HAD TO LEARN TO SPEAK,SWALLOW,TALK AND NOW TO WALK. I KNOW YOUR PAIN. PLEASE E-MAIL ME IF YOU WOULD LIKE TO .
ANN FOR SHANNON <shanipoo@imcnet.net>
THERESA, NEW YORK USA -

MY FIRST LOOK. ME AND MY GRANDMOTHER/CAREGIVER ARE ALWAYS SEARCHING FOR OTHER SURVIVERS. I AM LEARNING TO WALK . I AM A TBI SURVIVER. THEY TOLD MY GRAMMA THAT I WOULD'T LIVE. I FOOLED THEM . MY ACCIDENT HAPPENED IN JULY 1995. I'M STILL MOVING FORWARD.
SHANNON SLATE <shanipoo@imcnet.net>
THERESA, NY USA -

Blaine, You must know me, I am you.
nanook <nanookg@yahoo.com>
USA -

Adrian provided my with your site address. It was a pleasure looking in. My son (26) has been PwE since 1981. Thank you!
Bari <Bari970727@aol.com>
USA -

My 14 year old son had a closed head injury along with other major injuries in a truck accident in September of 1998. He spent 2 weeks in ICU and the rest of the time in rehab. A total of 2 1/2 months. I am still learning about this. Some of the stories are real scary, especially the ones of victims who have seizures later on in life. My son is doing very well, but after reading some of these stories, I wonder if there are more surprises in his future.
Lorrie <lorrie@sault.com>
USA -

Thanks for your sharing your story. I now feel as though somebody understands what I go through. I have also been able to safely realize I am not the same person I once was. I am finally learning to except who I now am. Thank you.
Sara S. Cherven <depung@cbcast.com>
Morris , IL USA -

I am the significant other of a 41 yo wonderful man who suffered a tbi due to a tubing/boating accident 5 months ago. I feel like I'm in a battle with everyone..the system, family, and am moving in the phase of angry recovery....looking for lots of info and support.....thanks...
melinda <queenmom 81@aol.com>
dothan, al USA -

I would like to get some more info. on the dogs that are used to help people with epilepsy, i am really interested thanks
Irene Hendricks <Bi Gemin69>
Antioch, Ca USA -

REMEMBER!, NEVER LOSE YOUR SENSE OF HUMOR! Today was another landmark day doctors told me that they don't know what they can do for tailbone pain. Neurosurgeon stated that pain was not caused by brainstem surgery. DCH trying very hard to cover-up fall out of bed DOCTORS ARE SENDING US ROUND IN CIRCLES FOR THE SECOND TIME. REFUSE TO KEEP ME ON ANY PAIB MEDS, BECOMING DEPENDENT UPON PAIN MEDS WHILE IMPORTANT ARE SECONDARY TO BEING ABLE TO GET SOME RELIEF. I HAVE BEEN TOLD THAT I HAVE HAD TO MANY BABIES,( WISH I COULD HAVE BEEN THERE AS I AM A 41 YEAR OLD MALE! MUST HAVE BEEN SIMPATHY PAINS FROM WATCHING MY WIFE OF 20 YEARS GIVE BIRTH TO OUR 3 ALMOST FULLGROWN CHILDREN IT WAS JUST A DELAYED REACTION, THEN IT WAS "ALL IN MY HEAD" THIS IS ALL A RESULT OF MY BRAIN STEM SURGERY IN FEB.98, THE FIRST HOSP CDH DIAGNOSED ANXIETY ATTAK AND NERVOUS BREAKDOWN THEY RAN CBC6; CHEM7; AND ETOH(ALCOHOL)AND DRUG SCREEN ALL OF WHICH CAME BACK NEG. IN THE MEAN TIME THEY STRAPPED ME TO A GURNEY, PUSHED ME INTO A ROOM SHUT-OFF THE LIGHT, LOCKED THE DOOR AND LEFT ME THERE UNTIL I HAD AN ACCIDENT!NOW I LIVE IN AND WITH SEVERE AND CRONIC PAIN IN MY TAILBONE! THIS IS HOW TO CARE FOR AN ANEURISM!? SENT ME HOME THAT DAY, WITH THE ADVICE I SEE A PSYCHIATRIST TO HANDLE MY DEPRESSION AND NERVOUS BREAKDOWN. SHOULD HAVE DIED THAT EVENING! NEXT DAY SYMPTOMS WERE STILL PRESENT, WENT TO DIFFERENT HOSP. WHERE PROPER DIAGNOSIS WAS OBTAINED! WHILE IN THERE CARE I SUFFERED A FALL FROM BED AND DAMAGED TAILBONE AT FIRST RN TOLD MY WIFE I HAD TAKEN A TUMBLE, NOW THEY DENY ALL KNOWLEDGE AND HAVE DOCTORED HUNDREDS OF PAGES OF NURSES NOTES TO REMOVE ANY REFERRENCE TO THE ROOM, EXCEPT FROM BILLING! (FIRST RULE OF DETECTIVES IS TO FOLLOW THE MONEY AND THERE IT WAS. NOW I EXIST ON PAIN KILLERS THAT THEY WANT TO CUT ME OFF OF THEM SO I DON'T BECOME DEPENDANT UPON THEM. THE PAIN IS INMATERIAL TO THEM! THE RECORDS AND THE HISTORY AND THE BILLING ARE NOT IN SYNC. SCREEMS OF COVER-UP TO ME!!!WHILE I'M MORE THAN GREATFUL FOR THE LIFESAVING MIRACLE PERFORMED BY THE SURGICAL TEAM. I HAVE LOST ALOT OF RESPCT, TRUST AND FAITH IN THE HEALTHCARE SYSTEM. I PRAY DAILY FOR THE STREGNTH TO MAKE ANOTHER DAY! DOES ANYONE ELSE OUT THERE HAVE ANY SIMILAR EXPERIENCES!? I'LL BE KEEPING IN TOUCH WITH THIS SITE IN AN EFFORT TO EXPOSE SOME OF THE OUTRAGEOUS ACTIONS OF THIS HEALTHCARE SYSTEM... WE ALL HOPE EVERYONE WHO READS THIS HAS A WONERFUL HOLIDAY SEASON AND RECIEVE THE STRENGTH TO CARRY ON AND ACCELL!
Dave Adams <daveadams1@juno.com>
west chicago, il USA -

I am lucky to find this page I really do enjoy reading poems just as much as I like to write them
Geoffrey B. Tolbert <boots@lycosmail.com>
Citrus Heights, ca USA -

I am the mother of a 8.4 chronologically aged little boy. He also suffered a grade IV IVH that resulted in a diagnosis of cerebral palsy, TBI and epilepsy. Our's has been an uphill battle; but I thank God for giving me hinds feet to climb my high mountains. As a result of the TBI, Fredrick also suffers (as well my family) from him having an impulsive behavior disorder. He is currently on topomax and depakote. However, he takes minimal doses compared to just three years ago he was on dilantin, neurontin and depakote... max dosing on them all. I attribute his recent progress to a wonderful nutritional supplement called RELIV. And I thank God for providing it to us. Fredrick's whole life has been complex... at birth he only weighed 720 grams and lost down to 500. He was extremely premature; 24 week gestation. It is a miracle that he is living as well thriving. His greatest strength is his sense of humor. It amazes me how this kid can laugh and make others around him laugh as well. That's his gift to the world I suppose... laughter. We all need more of that don't we. Well, as I visit this web site from time to time, I will pray for those names I see listed. God has helped my family tremendously. My son's father walked... couldn't deal with our life... We've been homeless twice; we've had to struggle like you wouldn't believe. But guess what, WE ARE MAKING IT. Soon, my oldest son will leave for college and it will be just Fredrick, myself and God... what a partnership. Be encouraged whoever you are... There is a higher purpose.
Jan Guider <jtfgs@aol.com>
Naperville, IL USA -

Mother had brain tumor removed a few years ago and is on disability and anti-seizure medication.
Lisa Nuxol <lisnuxol@gsaix2.cc.gasou.edu>
Statesboro, GA USA -

Mother had brain tumor removed a few years ago and is on disability and anti-seizure medication forever.
Lisa Nuxol <lisnuxol@gsaix2.cc.gasou.edu>
Statesboro, GA USA -

have had complex avm ressecsion, aneurism, cranoitomy, 20 brainclips, 3 shunts central dupage hosp. diagnosed me with depression offered tylenol and sent me home feel out of bed at hosp. and damaged tailbone, hosp. is trying to cover-up. feel like the lost dog blind in one eye, missing leg,ear and tail answers to the name LUCKY!!!!
dave adams <daveadams1@juno.com>
west chicago, il USA -

My husband got epilesy through a brain tumor. My husband was diagonised that he had this brain tumor, because of a seizure. Being told that once the tumor was gone, then the seizures would be gone. This is not true. I tell you this because my husband has been free from this tumor and its swelling for over 4 months and my husband had a grand mal seizure 2 weeks ago, while on the medication, and had a small one this morning. My husband and I can live with him having this if it just this, but they haven't told him that he does. I would just like them (doctors) to tell us that he has epilesy and correct his medication and not just continue to tell him that everthing is gone and everthing will be back to normal. If you can provide me with any information about why husband might be having these small seizures, I would really, really welcome it. If this information helps, my husband has these small seizures when he only takes 3 pills instead of 4, due to the doctor's prescription, and it happens when he asleep. Please help. Thank you!!
Joell Greco <Avaly@aol.com>
Savannah, GA USA -

I am a 26 year old female and was diagnosed with a seizure disorder 6 months ago. I was put on dilantin and have not had a grand-mal siezer since, but still have partial siezures. The dilantin is really a horrible drug. It makes me feel as if I am swimming in glue! My short-term memory is also severly impared. Im tired of feeling like a zombie and am searching for non-medication alternatives. I do not need surgery because there is nothing physically wrong with my brain. My MRI and CAT scan were normal and I also had a normal EEG. My doctor is of no help and is insistant that I take this wretched medication for the rest of my life! Please if anybody knows of any alternative treatment for siezures, especially natural alternatives, please e-mail me at brande.doten.gte.net. I would love to have my life and mind back! This is a wonderful sight and am greatful I found it. brande
brande <brande.doten.gte.net>
tucson, az USA -

I FELT YOUR WORDS. A ABUSE SURVIVER.
shelley n. bruce
Canada -

I came across this web page while doing research on epilepsy for a college course. Ever since my cousin died after having a seizure while swimming, I've always wanted to learn more about epilepsy. What I learned from this site had nothing to do with the technical information for my paper, but with the emotional aspects. I can't thank everyone who has submitted poems and stories enough, as I feel I've been given another chance to meet my cousin. Despite the hour I "wasted" in terms of research time reading through them, I've gained so much more that the time doesn't matter. What a beautiful site!
Sarah <owa_tajoe_kiam@yahoo.com>
USA -

Debbie, it was a great pleasure to meet you and Harley. I will ever be changed as to thinking that my own problems as small as they be are anything to get down about. When I think about what you and others such as yourself have to through everyday. Just to go out seems to be taking a risk, wondering if you will need to rely on someone to help you through your adversity. But, seeing how you overcome each obstacle as it comes and with the help of Harley (the smartest dog on earth) leaves me with a feeling of aw and wonderment. Knowing that we should all be thankful for our time here on earth and the pleasures of family and friends to help us. You are one in a million and I am so proud to be a part of your family (adoptively speaking) and glad to know you. I have so much to learn from you in the way that you deal with everyday life. God bless you, write or call me anytime if I can ever be of any help or anything else that you need. Norm
Norm Carter <norm_carter@questsys.com>
Roseville, Ca USA -

Hi I am 19 years old. I have lived with epilepsy since I was 6 years old. the reason I got epilepsy was because i feel in a water well when I was a child.When I fell i hit my head in the bottom of the well. Been able to go true it because of my family and doctors. especially dear God. Since I was a child I have been having to deal with my seizure. but thankfully I havent gooten on in three year since my medications controls it but I know i have to take my medication for the rest of my life but I thank my hole family for helping me ge though with it.I usually get ggrand mal seizure which get really bad that I have to go to the hospital. But lately I havent gotten any but I hope that I never do anymore. I want to go on with my life.I hope my experience helps others. just email me for any questions.
Maria Iabel Lopez <odie2079@hotmail.com>
Hollister, Ca USA -

I am 42years old, and became Epileptic 5/years ago, suffering 3/siezures on 1/day. Thereafter I was totally controlled on medication, but last week, devastatingly, I suffered a grand mal seizure, and was out for nearly an hour afterwards. I now find that I am in a constant state of anxiousness, and seem to be trembling inside - and in absolute fear of having another seizure. I am seeing my doctor and neurologist next week - and hopefull they will set my mind at rest. I would love to talk to someone, or be part of a support group- as I do not personally know anyone else who is epileptic and feel almost as if I am a total outsider and a bit of a freak to say the least. But most of all, I am so frightened - and feel close to tears all the time, and very trembly and scared to be alone. I hope to talk to those who have successfully 'mastered' the illness and who are now coping well. Kind regards MERCIA JACOBS TEL: 2731-3032190
MERCIA JACOBS <mit@iafrica.com>
DURBAN, RSA RSA -

I am the mother of a 17 yr. son that had a Closed Head Injury and fractured skull Dec 20, 1991. He only had a 5% chance of living and didn't come home for 5 months. He's in a wheelchair and can't talk. His seizures have changed since Sept.23. and he's having grand mal. His liver enzymes have been high and he can't take seizure med. Only 1 thats neurotin and it knocks him out and he has no quality of life. My husband & I have made the choice not to give him this. We are currently thinking about having the Vagus Nerve Stimulation done. (Pacemaker for the brain) If anyone out there has had this done that has a TBI injury please write and tell me. I can't find anyone that has had this. My son can smile and laugh and loves to eat and we are very grateful to have him. He goes to school in a special class and can do this until he turns 21.It also gives mom a break. I'm still new at this computer stuff but would love to chat with anyone that has a child with TBI. He continues to make little baby steps as I call it. God Bless And Remember NEVER GIVE UP!!!! Bonleecan
Bonleecan <Bonleecan>
Columbia, SC USA -

My sister, 48, suffered a closed head injury 15 years ago. She is now legally blind, is unable to speak clearly, has no fingertip sensation (which leaves Braille out) and mobility and coordination problems. When people are with her, it is very difficult to communicate with her as they cannot understand her. Cognitively she is fine and her biggest problem is loneliness. Close family and friends, of which are few, are her only social contacts unless we take her out. I am in the process of working with TBI in Rochester, NY. As our mother, who has been her prinicipal caregiver for 15 years, has not developed lung cancer, I am a bit overwhelmed with responsibilities for both of them as I am the only sibling here. Hopefully TBI here in Rochester will help. It's nice just to be able to read some of your letters and know we're certainly not alone. Thanks!
d winters <develop@frontiernet.net>
rochester, NY USA -

My sister, 48, suffered a closed head injury 15 years ago. She is now legally blind, is unable to speak clearly, has no fingertip sensation (which leaves Braille out) and mobility and coordination problems. When people are with her, it is very difficult to communicate with her as they cannot understand her. Cognitively she is fine and her biggest problem is loneliness. Close family and friends, of which are few, are her only social contacts unless we take her out. I am in the process of working with TBI in Rochester, NY. As our mother, who has been her prinicipal caregiver for 15 years, has not developed lung cancer, I am a bit overwhelmed with responsibilities for both of them as I am the only sibling here. Hopefully TBI here in Rochester will help. It's nice just to be able to read some of your letters and know we're certainly not alone. Thanks!
d winters <develop@frontiernet.net>
rochester, NY USA -

I have read with interest your page on encephalitis. At age 12, I contracted acute viral encephalitis. I was in the hospital for 3 weeks, and later in a children's rehab center for another 3 weeks. I walk on crutches everyday, due to this disease. Still, the lessons learned, the sensitivity I have gained through my envolvement with the ADA and other persons with disabilities have been invaluable. Today, I am 45 years old, married with 3 children and I am a city planner in Virginia. I am on the last chapter of a book I am writing on my youth, leading up to my illness. To those that struggle I wish strength and determination to accomplish your every goal. Thanks for you page!
Jim <Jimbo4466@aol.com>
VA USA -

My brother has a brain stem injury. This happened 26 years ago. All this time he has thought he would get better. He has not. Disabilitie benifits do not pay enough for him to survive. He is very limited to what he can do. I have been searching the internet to find some way to help him. He is still in denial so I do not know how to even approach him to get help. Maybe someone out there can help with info. I hope.
Melissa <damewood@cybcon.com>
Canby, Or USA -

my mom has seizures all of the time from a electrical injury. it's really hard on us all. I know how you all must feel. I'm just a teenager having to take care of my mom. But it has brought us closer than ever.
amy rogis
holland, ia USA -

none I'm interested in epilepsy as a result of uremia and encephalopathy
brenda defourneau <triniayd@aol.com>
chicago, il USA -

i JUST THOUGHT YOU WOULD LIKE TO KNOW THAT THERE IS HELP FOR EPILEPSY. I HAD SEIZURES DAILY FOR OVER 13 YEARS. WHEN THEY COULD NOT BE CONTROLLED BY MEDICATION, MY DOCTOR SENT ME TO A HOSPITAL IN PILADELPHIA FOR SURGERY. THAT WAS 3 MONTHS AGO AND I HAVEN'T HAD A SEIZURE SINCE. AND I AM ON 1/3 OF THE PILLS THAT I WAS ON BEFORE. IT IS LIKE HAVING A NEW LIFE. IF ANYONE WANTS INFORMATION, I WOULD BE GLAD TO GIVE IT.
Joe Trapper <TRAPSPLUMB@AOL.COM>
sCRANTON, PA USA -

Hey there. I thought I'd write to say that this web site has been really helpful in a report I'm doing for college. As a fellow Epileptic, I'm glad to see sites such as this one to inform people of this disorder. Hopefully a cure will be found and I think these sites are a step in the right direction.
John Koenes
Cicero, Il. USA -

EUREKA!! i got it.I am a 31 yr old mom of 3 and a wife. I have been unable to reach out to my family like i wish i could because ihave spent so much time trying to be NORMAL and no one who could really understand. To all who suffer from any type of seizure disorder, or family members all you need is patience and lots of love.I am now learning after 16 yrs of seizures that it is ok and that this who i am and i am quite proud. To all of the Debbies out there we are listening and a prayer to you and your loved ones.
MILLIE <MADISON3@AOL.COM>
NEW YORK, NY USA -

This looks real informative and resourceful.
Sheila Wilson <slw@dbtech.net>
Tuscaloosa, AL USA -

Hello...This is a very nice site. I am doing a research paper on epilepsy and I was wondering if anyone could send me information on how epilepsy effects the body. Thank you very much!
Monica <Monitca02@hotmail.com>
USA -

Enjoyed your page, it's good for me to read words such as these from time to time, keeps me focused on what life is all about Thanks
teresa <nogrubs@aol.com>
USA -

thanks
RUSS MOORE <Manicwon1@aol.com>
st pete beach, fl USA -

Debbie! this is Sandra*. from the E-List... I never knew you and Harley were so cute! I've got a collection of you poetry from the list and still love to read it.
Sandra McCall <sandra.mccall@autodesk.com>
Rohnert Park, CA USA -

My name is Joanne and my 14 year daughter was hit by a truck on Jan.14th of this year. I have been looking for a place to get info. and just to talk to someone who knows what and where I have been. As a mom of 6, 3 at home this has been so hard,and draining in everyway, I dont have a lot of time , but I hope to find time to read more of the guestbook and to find someone to talk to.
Joanne <jocon@ctaz.com>
Bullhead city, az USA -

I'M SO HAPPY TO FIND SUCH AN ENORMOUS AMOUNT OF PEOPLE WHO HAVE GONE THROUGH THE SAME THING I HAVE AND TREMENDOUS AMOUNT OF INFORMATION ABOUT TBI. I AM SEVENTEEN AND ON FEBRUARY 26 OF THIS YEAR, I WAS INVOLVED IN AN CAR ACCIDENT WHICH LEFT ME IN A COMA AND TEMPORARILY PARALYZED THE LEFT SIDE OF MY BODY. I AM NOW DOING MY SENIOR PAPER OVER THE INJURY WHICH CHANGED MY LIFE. THANKS SO MUCH FOR PROVIDING THIS INFORMATION-- I PLAN TO USE IT PERSONALLY TO DISCOVER MORE ABOUT THE INJURIES I SUSTAINED AND EDUCATIONALLY TO COMPLETE MY PAPER!
EMMA LANG <EBRUMMET@AOL.COM>
CLAREMORE, OK USA -

I was just introduced to your web site today. So many people with so many problems. Sometimes I feel like I'm the only one who has the problems and then I see others in so much pain and distress. Really makes me feel like I don't have any problems at all compared to others. I count my blessings every day for the grace that God has bestowed upon my family. When I was 19 and pregnant with my second child I had spells of passing out and seizures. My doctor at the time told my husband that I was just high strung and not to worry. After my second child was born I had another episode in the hospital. Then my doctor decided to have another doctor consult with him and take some tests. The diagnosis: Eplilepsy....I have had Grand Mal seizures since I was 19 years old. I am 55 now. For the first few years I would have seizures at least two or three times a year while on medication. Then eventually as I grew older the seizures grew farther apart. I still had to take my medication . As the years have gone by, I rarely have a seizure anymore. If I do it's because I have forgotten to take my medicine for two days in a row and then.....WOW. I am 55 now and have a son who is 37 and is suffering from a head injury from a motorcycle accident in 1985 and also a head inury from a motorcycle accident in 1993. Needless to say I am an advocate for WEARING HELMETS when riding bikes or motorcycles, but I am NOTan advocate for riding motorcycles at all!!! My son has been diagnosed as Organic- Bi-Polar Manic Depressive. Needless to say his life has been turned upside down with mood swings from depression for weeks to manic episodes that last longer and longer. The doctor told us that his episodes would only get worse as he grew older. He doesn't think there is anything wrong with him because to him he's not any different than he was before. He has been in denial for 13 years and will not admit that he has a disability. It's very disrupting for the whole family when he gets in these manic states and we (the family) are always the bad guy. He is in a hospital right now taking treatment. He is resisting treatment and it's very hard when you love someone and you know they are in pain and you have to do the "tough love" thing and think what's actually best for the disabled person. It's the hardest thing in the world to do. To look at my handsome son you would not think anything was wrong with him, but his decision making capabilities has caused him so much pain and grief in the last 13 years and we as a family cannot help him. He thinks and reacts like a small child. We do what we can but we need support and so does our son, but he doesn't think so. Are there any people out there who are "families" of survivors of head injured persons who can talk with us and relate and maybe give us some insight to our problem? We feel blessed that our son's life has been spared so many times and we feel that the Lord has a plan for him or he would not still be here.
Carol <1881n250@idir.net>
USA -

Debbie, You are a courageous young woman who has fought against the odds and you haven't let your disability disable you. I found your poem " Broken Dreams" quite good. I b belong to a program called VISTA ( a program for young adults with learning disabilities and those with traumatic brain injuries) - it is a great program. I myself am j just learning disabled, but have seen many of my friends here suffer from tbi's, and a good friend of mine has epilepsy. You certainly gave me a better understanding o of tbi's and the struggles you face. thanks for the insight! Melissa Culbert
Melissa Culbert <swb-mmc@prodigy.net>
Stamford, CT USA -

I am a 33 year old female who was recently diagnosed with epilepsy. I had a "grand mal" seizure 2 weeks ago while driving. I was extremely fortunate that no one was hurt, including the F150 that I rear-ended. I woke up in the hospital emergency room. This was the first seizure that I have had in 17 years. I had a seizure in 1982 when I was a Jr. in college that they never did determine the cause of. I was on phenobarbital and dilantin for a year and then the Dr. took me off of it. 3 years ago, I started having what I called "hot flashes". It was a sensation that I would get in my head & I would get warm in the upper part of my body. It's extremely hard to describe but I now know that these were Auras. I could never distinguish what was the cause of these and they would come at different times. I was alert when these were happening and could carry on a conversation with you and you'd never know anything was wrong. They would last around 2 minutes. Sometimes I would hear voices and recall memories but not all the time. What was really strange was there was this one particular stop light that I recall having quite a few of them at. The last thing I recall before my seizure was having this "hot flash". That is why I'm certain they were auras. At the emergency room, the Dr. put me on Tegretol (3 times a day) and referred me to my neurologist. I had been seeing him for these "hot flashes". He had an EEG ran on me prior to this seizure that didn't show anything. I thought I was crazy and was just imagining these "flashes". The day of my seizure, I had been to see my gynecologist to have a hormone check to see if I was going into early menopause. I've read alot of these stories and realize just how lucky I have it. I've had 2 seizures in 33 years and live a normal life. Is there anyone else out there that has these "hot flashes" or auras as they're called? Or has had the same experience as I've had? God bless you all and you'll be in my prayers!!!
Kenna <Froggy2@apci.net>
Belleville, IL USA -

vist was very helpfull in letting me unstandstand what my clients are going through. Thanks
Jamie <jamie67lynn@yahoo.com>
alexandria, mn USA -

I am a physical therapy student at the University of MIchigan and we were asked to review websites pertaining to TBIs for our clinical neurology course. I loved your site and appreciate all that you are doing. Please keep updating this site as it is a great resource and a great place to visit. Thank you.
Cara Bonino
MI USA -

I found your page by accident tonight after having another argument with my partner of 2 1/2 years. He suffered a TBI in an automobile accident in 1992. I love him very much and would do anything to help him. He is also a practicing Alcoholic, which only makes matters worse.This is what usually causes the arguments. 99% if the time he is a wonderful man to be with. The other 1% is horrible. We live in a rural area, so there aren't any types of support groups for either him or me. I found several sites that I think will be helpful for us. Thank you for sharing your story and to all others who have also done so. I look forward to having others to communicate with and get support from who can relate to how I feel. Hopfully, I can also be of help for others.If anyone out there can offer any support or guidance, please write me. Thanks bobbie bobbie@Tstar.net
bobbie <bobbie@Tstar.net>
llano, tx USA -

I found your page by accident tonight after having another argument with my partner of 2 1/2 years. He suffered a TBI in an automobile accident in 1992. I love him very much and would do anything to help him. He is also a practicing Alcoholic, which only makes matters worse.This is what usually causes the arguments. 99% if the time he is a wonderful man to be with. The other 1% is horrible. We live in a rural area, so there aren't any types of support groups for either him or me. I found several sites that I think will be helpful for us. Thank you for sharing your story and to all others who have also done so. I look forward to having others to communicate with and get support from who can relate to how I feel. Hopfully, I can also be of help for others. bobbie bobbie@Tstar.net
bobbie <bobbie@Tstar.net>
llano, tx USA -

I found your page by accident tonight after having another argument with my partner of 2 1/2 years. He suffered a TBI in an automobile accident in 1992. I love him very much and would do anything to help him. He is also a practicing Alcoholic, which only makes matters worse. 99% if the time he is a wonderful man to be with. The other 1% is horrible. We live in a rural area, so there aren't any type of support groups for either him or me. I found several sites that I think will be helpful for us. Thank you for sharing your story and to all others who have also done so. I look forward to having others who can relate to how I feel. Hopfull, I can also be of help for others. bobbie bobbie@Tstar.net
bobbie <bobbie@Tstar.net>
llano, tx USA -

I found your page by accident tonight after having another argument with my partner of 2 1/2 years. He suffered a TBI in an automobile accident in 1992. I love him very much and would do anything to help him. He is also a practicing Alcoholic. 99% if the time he is a wonderful man to be with. The other 1% is horrible. We live in a rural area, so there aren't any type of support groups for either him or me. I found several sites that I think will be helpful for him and me. Thank you for sharing your story and to all others who have also done so. I look forward to having others who can relate to how I feel. Hopfull, I can also be of help for others. bobbie bobbie@Tstar.net
bobbie <bobbie@Tstar.net>
USA -

When I was 13 years old, I was diagnosed as having viral encephalitis. I was in and out of consciousness for 1 week until they figured out what was wrong with me. I lost a lot of my memory and had a hard time adjusting afterwards. I was put on phenobarbital and was a walking zombie throughout my 8th grade year. I am 30 years old now and I have found that I still suffer. It was very comforting to know that I wasn't the only one who had this viral infection and that it is common to still have some of the symptons. Thanks for your website. I have learned a lot about what happened to me.
Tammy Browning <Catpause@aol.com>
Seaside, CA USA -

I am a new occupational therapy student at Eastern Michigan University. I'm interested in learning about TBIs and would love to hear any comments regarding OT services..what did they do for you, did you find it helpful..why or why not? Thank you in advance, it's important to know what is working and what needs to be improved.
Daina Miller <daina_miller@yahoo.com>
MI USA -

I am the father of a 14 year old daughter who has TBI resulting from a car accident in 1994. She was in a coma for 4 months, and is paralized on her left side, with severe ataxia on her right. She has very severe mood swings that is very upsetting to us all. She has recently started to get worse with her behavior and has been put into different hospitals for behaviorial problems with no end in sight. I have not been able to find the right help with her for all these years and am in desperate need of information. I live in Eastern Tennessee with limited resources. If anyone has any information that they could give, please e-mail me. Thanks..... Richard......
Richard <Lskynnerd@yahoo.com>
Mt.Carmel, Tn USA -

I am a graduate student at Central Michigan University. I am currently taking a course on TBI. I was searching the Internet and found your web site. Thanks for all the valuable information.
Kary Tomaw <32fofjt@cmich.edu>
Mt. Pleasant, MI USA -

I am a graduate student at Central Michigan University. I am currently taking a course on TBI and I was searching the Internet and found your web site. Thanks for all the valuable information.
Kary Tomaw <32fofjt@cmich.edu>
Mt. Pleasant, MI USA -

My daughter was in an accident in January and since has suffered with seizures and loss of taste and smell. This is all new to me and I am glad there is some place we can get answers to some of our questions. Thanks
Tea <teahhh@aol.com >
Charleston, SC USA -

I am an aneurysm survivor with 3 years under my belt. I would love to coorespond with a person who knows what it's like. Robyn
robyn <rkgoodwin@ou.edu>
USA -

I am a student at Stonehill College in Easton, Mass. I was asked to do a project on TBI which lead me to you. Right now I'm wearing a gold chain around my neck. You can't see it. I can't see it. In fact, no one can see it. But on every link of that gold chain, there is the essence of a person whom I admire and from whom I gain strength. I wanted you to know that you have formed a link on my gold chain. Good luck and keep writing. Let nothing get in your way.
Evan J <evnaflow79@juno.com>
freetown, MA USA -

I've learned a great deal by viewing your notes and stories. My husband suffered a TBI 3 weeks ago. This is still very new to us. We would like information on several things that are happening to him right now. 1) constant headaches - how long before they go away? 2)Will he ever get the months of memory just preceding the injury back? This is the scarriest thing our marriage has ever endured. Thanks for your help.
J. Welch
wa USA -

check this out. there's this guy. i stole his sweatshirt 5 years ago in tampa, moved away and hadn't seen him since. i bumped into him on AOL and we started chattin. found out that it was him and we've been talkin ever since. we have the same year and model car, the same furniture, tele and all. we both have a cabin in the same neck of the woods in hiawassee ga, it doesn't seem like much, but i think it's fate. i am so in love.... <3
MySsY <DjPhAtKaTt@aol.com>
jax, fl USA -

I AM 54 AND I LOVE PEOPLE WHO WRITE POEMS HERE IS A POEM I AM VERY GAY TODAY
ANTHONY NEONAKIS
WELLINGTON, NEW ZEALAND -

I AM GAY
ANTHONY NEONAKIS
WELLINGTON, NEW ZEALAND -

I am a 23 year old female and have been going threw seizures since I was 5 years old. I use to go threw 6 to 10 a day and my docter could not help any more then medician I am now only going threw them when I am running a temp. or when the stress is extramly hi i was wondering if you had any comments thank you for reading this.
Michelle <Mickle24@aol.com>
buffalo, NY USA -

My mom is 49 years old and has had epilepsy since the age of 17. Grand Mal seizures-coming in clusters for several hours at a time, she has gone into status few times. Her seizures have never been controlled with med's. She has been on every anticonvulsant available. In 1991 she had brain surgery to try to stop the seizures...it didnt work..it only made her situation worse, alot worse. Now she has suffered a major personality change, behavioral problems, and just plain and simple "she's not the mom that I had when I was growing up". She has tried to take her own life several times and is just a very unhappy person. I cant help but wonder why she wasnt offered any type of rehab after the surgery..it was obvious that she was having problems living a normal daily life. I tried to get her into several places and they just said she had no problem. Now here we are 7 years later...she is in a psych-facility for the suicide attempt in May 1998. HELP!! I am the only one who even cares what happens to her, and I feel totally helpless, and she has changed so much..she thinks that I am being mean to her and I think she hates me, I used to be the light of her life.Please e-mail me if your situation is similar or have any suggestions.
Kim <ZIMRMN2@aol.com>
Little Rock, AR USA -

Dear Debbie, I am working with people who have survived traumatic and acquired brain injuries. I would like any information you may have on films, support groups, etc. Thanks!
Lynnea Ritz <lritz@btigate.com>
USA -

i came across this website on saturday, october 24, 1998, and i'm glad i did. i don't have any health problems other than acne at the age of 41 years old, but i have hoped to have love, caring and sharing at this age. i'm grateful to god to allow me to have this computer and to be able to afford the internet. your website has given me more hope and i do appreciate it to the fullest. my words alone can't express my deepfelt gratitude. it is only god that allowed me to look up such important subjects. i first looked up sadness, and i just continued looking up words i thought might lead me on to others. and here i am, looking up hope and eventually, i'll be looking up prayers, and i don't know what else at this moment. but because i hoped to continue growing positively in my life, i'm growing more and more. some days just seem hopeless, but i guess that could be normal, in that i looked up the word sadness, and i discovered that it's ok to be sad, and that it's a sign that one really and truly cares about others, etc., i hope my hopelessness is perfectly normal, and that i can get hope even out of my hopelessness. thanks again for this subject on the internet. i hope you can respond to this email.
noreene m. bostick <nbos105114@aol.com>
new orleans, la USA -

Dear Debbie, I have enjoyed reading your poems and stories. I too am a TBI/Epilepsy SURVIVOR. I had a virus that attacked my brain called viral encephalitis in 1994. I was 30 years old when this happened. I can really relate to your poems/stories. I also have personally felt similar to the emotions you have expressed in your poems/stories. My entire brain was swollen, and the doctors did not even know what kind of cognitive ability I was going to regain or any kind of ability to comprehend anything ever again. I am a walking and talking miracle before people. The Lord blessed me! I had been an administrative secretary for 12 years, and I was never sick before other than an occasional flu or cold. The doctors said that the virus came from a mosquito bite. I was greatly shocked to find myself in a hospital bed with my head swollen and hurting grandly, and I was unable to remember anything. I lost my complete memory. I was erased you may say. I have gone through speech therapy, physical therapy, and occupational therapy to try to regain my ability to be able to live. By the great grace of God am I even able to read much less be able to remember things, (which my brain is still healing) and be able to walk. My body was affected with paralysis, and I had to be literally hand fed by another person. The left side of my body is still affected at times as I go through a seizure with paralysis. I am also able to still type. My skills are still retained. Thank you Lord! I have seizures though left from the illness, which I have never had before. I am also on long-term disability. I still have trouble with my memory, but I am trying to make the best of it. Adapting you may say, because, you see, I have no other choice. I notice that I do not do well under stress/pressure. I am more apt to have a seizure. I notice also that I am slower in my abilities with certain tasks that I use to perform in a more quick manner. The Good Lord said, "Do not go on your own understanding." That particular Bible verse has really helped me get as far as I have (along with many others), and I also continue to hold God's hand and walk in His ways and not my own. My plans are now His plans, because my life has completely changed. I must admit it is very, very hard at times and there has been a lot of tears that has been a great part of my healing, and I was very, very angry that this happened to me, but if I can help one person in my life for Him it is well worth the great trial that I have had to experience. If someone would like to just talk and needs someone to listen and support them as they go through their great trial, please feel free to email me. I am here for you. With great love and mercy may God bless you! Love, Dianna (LtlePeach@AOL.com)
Dianna L. Mahl <LtlePeach@AOL.com>
Oakley, CA USA -

very interesting!!! sexy017
Kate <sexy017@aol.com>
waterford, N.J USA -

Dear Debbie. Found your site to be extreamly informative and heart lifting. I am a TBI survivor. Due to a motorcycle accident in 1987. Due to seizures I was retired from my job as a police officer in California. I was on dialantin for several years and have taken myself off the medication as it was causing me to loose my teeth. I am searching for other medications, Natural or otherwise that may help. I think I am seizure free now as I have not had one in over five years but the aura's are sometimes haunting. Anyway thanks for the site. I'll be back..
Bob White <bobnrobn@cpros.com>
Grants Pass, OR USA -

I have an uncle who has epilepsy. I would love to know what he is going through and what can be done to help him. I don't know a lot about it, so when I had the chance to do a research paper, I knew my topic was going to be epilepsy. I would really appreciate any information anybody could send me. Thank you very much!:) P.S. your web site is great :)
Amanda DeBerg <evercleer@hotmail.com>
Cody, Wy USA -

I was hit by a car while riding my bike on 4/26/85. I split my head open on the windshield, landing in the grass, picking up a fungal infection. After being airlifted to Long Beach Mem. Med. Ctr., I was in a coma for 17 days, in the hosp. for 4.5 months, and underwent eight brain surgeries. From my TBI, I had a petit mal seizure, and was put on Dilantin 13 years ago. Unfortunately, every EEG and Dilantin level I have had done says I need to continue taking the medicine for the rest of my life due to irrregular brian activity. The whole story is too long to tell, so I will end off with this, WHEN YOU RIDE A BIKE WEAR A HELMET!!!!!!!!!!!!!!!!!!!!!
Lee M. Spitzer <hclspitzer@aol.com>
Cerritos, CA USA -

Second try to add to your guestbook. Sometimes the rubble I have for brains doesn't work so well... Five years ago the front tire of my bicycle blew while I was riding down a hill in San Francisco at high speed. My helmet might have kept my body alive, but the *me* who lived in that brain was killed. The new 'me' was put together from surviving fragments of that brain, but a lot of holes are left. Some cognitive deficits that are downright weird. And, potentially fatal, a biological mood disorder caused physically by the brain injury and, therefore, very resistant to treatment. Depression is my middle name. So I would like to emeet some of you out there who might have similar trouble. Maybe compare notes on which treatments have helped and which have not. What personal techniques have helped avoid falling into a depressive episode, what has helped get out of one. What defense mechanisms can guard against the worst outcome of severe depression. I've just started to explore your great site, Debby. You are a good person.
Tony Finnerty <tfinnerty@jps.net>
Vacaville, CA USA -

Hi everyone welcome. I'm back here to invite everyone to please read my short true stories. I have new ones and I had another one revised. About surviving brain inury and sign my new guessbook with your comments. Thank you all and bless you. http://www.geocities.com/HotSprings/Spa/7713 Thanks Again David R.r
David R. <ElToro518@aol.com>
Lynn, MA USA -

I suffered a traumatic brain injury after a horse fell over on top of me.I was wearing a helmet that they believed saved my life.I had to learn to walk talk read and write all over.During this process of trying to be a person,my husband was unable to handle the tragedy,he left and divorced me.Life is very difficult but I can do these things today with alot of effort and pain.I have many other injurys from the accident however,I lived beyond anyones believe so I must be strong and try to make the best of every day,I am alive. Thank you for hearing my story, BJ Zirkan
Brenda Zurkan <BrendaJ4@aol.com>
toledo, oh USA -

These poems and stories are too long.
Scott McClusky <none>
Euoroguay, Cuba -

My son is 9. He was diagnosed as an Epileptic 3yrs. ago He was found to have brain damage in hi right frontal lobe of his brain. He is a bright and wonderfully friendly kid. He can make friends whereever he goes.Unfortunately he cannot have any sleepovers because of his problem. The parents of his friends are not comfortable with the fact that Ben MIGHT have a seizure. This makes him DIFFERENT! All he wants is to be the same as everyone else. The seizures started in Kindergarten.He is now in Fourth grade and lovesit. He had a spell yesterday that lasted only a few minutes but he didn't tell the teacher because he didn't want to disturb the class. He is my only child and I understand how he thinks. The teacher did not know that Ben was having a problem. I only hope that someday Ben can lead a normal life without the worry of having a seizure. Thanks for the chance to tell my story.
Caralee Van Loon <cara208@aol.com>
Grosse Pointe Park, Mi USA -

hi i am a mum of a 16 year old boy david he was assaulted at school by three boys when he was just 13 years old he has brain damage and larst year he has no sight in the left eye from the head injury we have lots of things to deal with i would love for things to go back to that day in march but now my life is looking after him thanks lots and love to all angie
angela griffin <griffina @mpx.com.au>
wagga wagga, nsw australia -

hi i am a mum of a 16 year old bay david he was assaulted at school by three boys when he was just 13 years old he has brain damage and larst year he has no sight in the left eye from the head injury we have lots of things to deal with i would love for things to go back to that day in march but now my life is looking after him thanks lots and love to all angie
angela griffin <griffina @mpx.com.au>
wagga wagga, nsw australia -

Thank you for a beautiful and informative site. We as families of TBI survivors, and TBI survivors themselves, have a very special path to walk. Only with God's intervention and and education of the public, along with determination from all of us, will we be able to beat this devestating injury, and stay focused on lifelong rehab. God Bless to All Love, Tammy Mother of 20 year old TBI survivor
Tammy Brunt <catsoul@surfsouth.com>
GA USA -

I am 24 yrs old i have had partical complex seizures for 24 yrs .... at age 15 i had brain surgery i was having more than 110 seizures a day. the surgery they took out the right side of my brain in the middle of the surgery i had a stroke and was semi-paralized..now i am having 1 seizure every 3 mnths. all my plans in life have been screwed.. if you want to talk email me at cgalst
CLINT GALSTER <CGALST>
WAUKESHA , WI USA -

I am 24 yrs old i have had partical complex seizures for 24 yrs .... at age 15 i had brain surgery i was having more than 110 seizures a day. the surgery they took out the right side of my brain in the middle of the surgery i had a stroke and was semi-paralized..now i am having 1 seizure every 3 mnths. all my plans in life have been screwed.. if you want to talk email me at cgalst
CLINT GALSTER <CGALST>
WAUKESHA , WI USA -

In my school we have a required paper called senior project. In order to graduate we have to pass this project. The topic of our senior project has to be realted to our shop. I am in Early Childhood Education and my topic is cause and treatment of epilepsy.If there is any information you can send me about this topic, it would be greatly appreciated. Thank you!!
Jennifer Kishbaugh <jenkissie@hotmail.com>
Townsend, De USA -

Debbie: Please refer to my e-mail. Thanks for your terrific effort to help get the message out! We're all in your debt! Monk :)
Art L. <monk6272@aol.com>
Long Island ( ! ), NY USA -

I have been married to an epileptic for 22 yrs. I attended my first support group last month. My husband started having seizures when he was 10 yrs. old. He never told his family about his deja vu feelings. I had been dating him for several months before I witnessed a seizure, even he didn't know what they were. He always tried to minimize the seriousness of his problem. At first they were only a few times a year, but as they became more frequent and more strange I took him to a DR. He was only diagnosed 12 years ago. He has tried lots of meds. they do not work. He recently wrecked his car again. He is having trouble accepting that he should no longer drive.(my car) He is very artistic and intelligent, he is back in college trying to complete his education. We have only had a computer for 2 weeks and the internet for 2 days. I am so glad to have found this page. This is why we hooked up. We'll be looking for lots of help and advice.
R.P.Smith <sreesree@swbell.net>
kansas city, mo USA -

I Have been an Epileptic since 1972, I have been through people ingoring me when I have a GrandMal seizure,and at This point I have Partial seizures, but thank goodness a aura.I Know how it feels when u want a job, but the manager says no, but says it has nothing to do with my Epilepsy. I have decided it is my job, to educate people about my seizures, and what They can do if I have one with them around.Please don't be afraid of me, Just ask what You can do if I have a seizure around you. Bless You, For having this webpage. KG2@aol.com
Kelley <KG2@aol.com>
CA USA -

I'm a friend to a person with epilepsy. I don't know how it is to have epilepsy but I understand a lot about it and I know a little about it.
Lavinia Williams <ciacil@ptd.net>
York, pa USA -

I have epilepsy
Stephanie <Pare123@aol.com>
West Gardiner, me USA -

'SURVIVORS', AS WE ALL REALIZE,JUST CAN'T GIVE UP!! BACK IN 1985, I acquired my T.B.I. during my first gondola ride in Venice, Italy. I was DEFINITELY in the WRONG place at THE WRONG TIME; so CRASH-BOOM occurred, which, THANKFULLY, I SURVIVED!I spent ten weeks in a coma and was then flown back to the USA for further recovery. WELL, I WANT TO TELL YOU-ALL, THAT ALTHOUGH THAT 'CRASH-BOOM'RATHER SIGNIFICANTLY ALTERED the former 'JANE', today's Jane is doing great! I'm STILL HERE! A SURVIVOR JUST DOESN'T GIVE UP!
Jane Popkin <rpopkin@erols.com>
Glen Cove, NY USA -

Hi there. I'm the Coordinator for a fairly new Brain Injury Association. We are looking for ideas on how to expand our services. You have a great website! Thanks for the info. Carol Paetkau Community Outreach Coordinator Fraser Valley East Brain Injury Association
Carol Paetkau <paetkau@uniserve.com>
Aldergrove, BC Canada -

I think your for your page. As a TBI survivor I found it very frustating for family and friends to understand how in the span of a few minutes, I became a "different person". However, it was not all in vain as I have written a book about my experience and subsequent rehabilitation entiltled "Conquering the Darkness". This is exactly what TBI meant to me as I was "in the dark" for several years. Through a software program that I was lucky enough to find I was able to work on my cognitive and memory problems. I am now on a crusade to make the public aware of TBI and help victims as well in any way that I can. If anyone has any questions, or would just like to talk via email, please email me and I will respond as quickly as is possible.
Deborah A. Quinn <DebbieQ@aol.com>
Naples, FL USA -

This is a great reference site with a lot of information for both the professional, the family and the patients themselves. Thanks for being so easy to find!
K Bond, MS OTR/L <bondkab@aol.com>
USA -

This is an extrodinary page about extrodinary people. It makes me feel good to know that I am not alone. I could cry though, because I am not alone. The stories of hope and preserverance have touched me forever and the poetry has set up a home in my heart. Like many of you I write and read poetry, best meds I take. I am a thirty year old mother of 3. The hardest thing, next to finding a good neurologist, has been accepting help from my husband and little ones. Medication doesn't always help my body, but this page has helped my soul. You are all in my prayers
Gidget <nanookg@yahoo.com>
USA -

Iv just started working with people that have brain injuries. the more imformation i can find the better.thankyou. John Yule
JohnYule <JohnYule@bigpond.com>
newcastle, N.S.W Australia -

I presently work with ABI and TBI victums and I am finding this lifestyle of working and rehabilitating these people very insightful and rewarding. I have a bachelors degree for sociology and working towards becoming a physiotherapist. The one thing I think I have learned from working with these people is that, things change, take care everyday because it only takes 1 second for a whole life to turn right around. I don't pitty the people I work with, I just try to make their days as functional as possible and to bring normality back into their lives. I plan on making this line of work my life and hope to make the people I work with happy on a daily basis.
Patrick <pheonix@itcanada.com>
Welland, ON Canada -

I am 32 years old. I was diagnosed with Epilepsy 11 years ago after a grand mal seizure that occured out of the blue . My seizures were uncontrolled from that moment on for almost a year, having 2 to 3 grand mals a week. No one is sure what brought my seizures on. Seizures took over my life for a very long time... but I managed to graduate college and go on to get a masters in education. I am currently a teacher in the state of Tennessee. I am having some problems living life day to day out of fear of SEIZURES ! I had a seizure while driving 4 years ago. Fortunately, I knew it was coming and was able to pull off the road in time. I started having anxiety attacks about driving. These anxiety attacks have turned into panic attacks. I have tried counseling which helped me get control to some extent. I would like to talk with someone through e-mail that may be dealing with or has delt with panic due to fear of seizures. I have been seizure free for 4 years now. (only one after the driving thing) ! Great things can happen if we just let them !!! =)
vonette <tiggerr30@aol.com>
memphis, tn USA -

I am a survivor of TBI that happened when I was 5 years old. I fell out of moving car and fractured my skull. I had 40 stitches in my head. After I had my 2nd child I started falling down. I was diagnosed with low sugar. A few years later and many falling over backwards episodes, I was diagnosed with with epilepsy. I was told that they could "fix" my epilepsy, but I would have to have brain surgery to remove the scar tissue that is pushing on my brain, not an option fo me. The dr also said that it would just come back more than likely in 16-20 years. Sounds like a long time but I was only around 30 at the time. Now at 45 and on my third medication I am doing fine. The first one made me extremely dizzy, the second one worked great for about 8 years then I started having severe hives and rashes, but I could not convince the drs that it wast the Tegretal, I finally found one who listiened and am now on one that, aside from some weight gain, hasn't caused any problems so far. I am very glad that I found this page. I don't feel alone anymore.
Joanne
USA -

I am a survivor of TBI that happened when I was 5 years old. I fell out of moving car and fractured my skull. I had 40 stitches in my head. After I had my 2nd child I started falling down. I was diagnosed with low sugar. A few years later and many falling over backwards episodes, I was diagnosed with with epilepsy. I was told that they could "fix" my epilepsy, but I would have to have brain surgery to remove the scar tissue that is pushing on my brain, not an option fo me. The dr also said that it would just come back more than likely in 16-20 years. Sounds like a long time but I was only around 30 at the time. Now at 45 and on my third medication I am doing fine. The first one made me extremely dizzy, the second one worked great for about 8 years then I started having severe hives and rashes, but I could not convince the drs that it wast he Tegretal, I finally found one who listiened and am now on one that, aside from some weight gain, hasn't caused any problems so far. I am very glad that I found this page. I don't feel alone anymore.
Joanne
USA -

I HAVE BEEN A TBI SURVIVOR NOW FOR 4 YEARS WAS HIT IN THE HEAD WITH A 5lb ROCK WHILE DOING SECURITY WORK AT A BUS STATION IN 1994 THANKS FOR HAVING THIS PAGE
STEPHEN J. SWETT <swetthog6@aol.com>
ALBUQUERQUE, NM USA -

To every single person, every organization who helps provide information on this subject, thank you. My wife Karen (recent TBI from a bicycle accident) and I are only 10 days donw this road, no idea where it wil ultimately lead, but to know we are not alone and some of the things we will be encountering is so much help. Thanks.
Pat Brunsdon <peeb@pc.jaring.my>
Kuala Lumpur, Malaysia -

My 26 yr old brother died from SUDIP. That is what the doctors call Sudden Death in Epilepsy, but they won't tell you that it can happen. Tell people you love about it...and ASK YOUR DOCTOR FOR DETAILS!!!
Wendy Leigh Motherway-Toftum <wtoftum@yahoo.com>
Minneapolis, MN USA -

Hello has anyone read my Short True Stories. Please E-mail me with your comments and State you are from. Thank you. http://www.geocities.com/HotSprings/Spa/7713 Today's Date 8-31-98
David R. <ElToro@aol.com>
Lynn , MA USA -

What I have seen, looks good. I had a Left Cerebral Hemorrhage 8/15/81 Took a lot of work and support from total strangers, some who became good friends, and in 1995 I became a licensed social worker. In 1996 I went on line where my State of Idaho License is worthless, once the signal crosses the State Line, but that's Okay.(: It is my opinion that basically, Stroke and T.B.I., as well as most all brain injuries are very similar. However, the Traumatic Brain Injury is the worst, just by the nature of its occurrence. Debbie, I would very much like to communicate further with you regarding some issues. Please, contact me at your convenience? Rob Evan Hughes, L.S.W., Survivor, and Advocate for Families of Stroke and Other Traumatic Injuries. http://www.viplaza.com/hughes/
Rob Evan Hughes, Stroke Survivor <robeh@gemstate.net>
Pocatello, ID USA -

Greetings to all who tread the road in recovery from a Traumatic Brain Injury. I am a TBI "Survivor" just over 7 years post injury. Since the undergoing of 2 emergency brain surgeries, just 10 days apart, I have, with the help of numerous people created a book titled, "Poetic Awakening." The book is Inspiring/Spiritual in content, yet cuts across all religious barriers. The book is written for any who are in recovery from a Traumatic Injury to the brain. Many have commented the book was also filled with hope for the loved one's of the injured. To obtain your copy, e-mail me at mtnbliss@yahoo.com. Please be sure to include a mailing address to where a book order form may be sent to you. Faith; Hope; Love and Peace, John Snyder, TBI "Survivor;" Author
John Snyder <mtnbliss@yahoo.com>
Young Harris, GA USA -

I recently (well, today) learned that the person whom I love most has epilepsy. He was afraid to tell me because he thought I might reject him, but of course I wasn't about to let that happen. As I live in a foreign country it is sometimes difficult for me to do extensive research in my native language (English). This webpage certainly has provided support and information, and I expect to be checking back periodically. Doumo arigatou gozaimashita.
Miya L. Adams <miyaowmix@aol.com>
Chiba, JAPAN -

my daughter doesn't have epilepsy, she has been diagnosed with AICARDI SYNDROME. She has seizures on a daily basis, and we like alot of you have tried everything. Where do we go from here? For more info on Aicardi Syndrome-AICNews@aol.com
melanie <ravenms@yahoo.com>
jasper, alabama USA -

I have had epilepsy for about 25 yrs and found this page very informative.You must have put alot of hours of research into it.
Deb
USA -

I am 25 years old and I have a 5 year old little girl with epeilepsy. She has had it since she was 6 months old. She was diagnosed with Hemimegaencephaly. We tried just abotu every seizure drug available. At 2 yrs old she has a hemispherectomy. This has helped her a great deal in her seizure control. She still has them every once in a while but they are not as intense or as long as they were before the operation. I would like to talk to anyone who is in the same boat as I am or has a child with a seizure disorder.
Alison <BsBbyGrl@aol.com>
San Diego, CA USA -

@ 42 years old this is the first place i have found comfort and been able to speak freely about epilpsy it has been with me for thirty years and is the one monkey that is attached to my back that i have not been able to defeat learning to live with has been hell at times, but when i forget about it things start looking good a siezure reminds me what is really going on that is when i go through the low points. i have had to leave the construction feild and go to college mostly for the safety of my dear friends that i worked with i do not think they ever worried about me having a seziure but in the back of my mind when ever i was running heavy equipment i worried about it and i feel the stress encouraged the seziures. THANKS EVER SO MUCH lee
lee siegrist <lsiegrist@hotmail.com>
wa USA -

I have a ten year old daughter who has been suffering from seizures since birth. We have tried numerous medications to control them, and although the seizures are less frequent than they used to be, they are still uncontrolled. we have tried phenobarbitol, mysoline, depikote,tegratol,felbatol, and topamirate - the last two she currently takes. One seizure can last up to two hours and only valium or ativan stops them. To lessen our trips to the ER, we are able to administer up to 4 milligrams rectally at home. This usually works but the side effects take a great toll on Jamie. There have been many sleepness nights worrying if she is going to have a seizure in her sleep and I am so scared she will die from one. Last night was the most panicked I have ever been. You would think I would be used to her seizures by now, but this time I felt she really could have died. She couldn't get a breath of air and then she vomited and started choking on her vomit. Luckily, this siezure only lasted about two minutes. I feel completely lost!!!!!
Jodi Welch <jowelch@mindspring.com>
USA -

I have problems with epilepsy. I am struggling with it a lot. I like your web page
Leslie Bates <cvpbates@hotmail.com>
Toronto, ON Canada -