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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Jeileen193

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Hi everyone!!. So this is my first time ever doing a message board for having epilepsy, even though i have had it for eight years. I was diagnosed at age 16. Fortunately, I havent had any grand mal seizures since the two i had when i was diagnosed, however, I experience a lot of side affects as a result of the medications i am on. Sometimes I feel like a guineau pig when i am at my neuro's office because its like ok whats he going to change now and when my meds are changed it takes a lot out of me. Over the past eight years I have never gotten to talk to anyone who can say those famous words to me "i understand". I do a lot of volunteering for cancer organizations for personal reasons and I can tell them I understand what its like to see someone go through chemo, etc. but I've always wanted to talk to someone about epilepsy who can truly understand my p.o.v. I look forward to hearing from you. :)
 
Welcome to CWE Jeileen193! I started having seizures when I was 15 but wasn't diagnosed with epilepsy until I was 16. So I had hundreds of seizures during that time. Now I'm on 3 meds to stop the seizures (hopefully 2 by my next doc's visit) and am now seizure free just in time for my 17th birthday.

Believe me, I UNDERSTAND ;)
Meds have done so many things to me. I have been put on so many. I have hallucinated, did nothing but eat and sleep, did not eat for days at a time, and one med made me act like I was high. People have asked if I was MRDD or MR because after a seizure I will act very strange and several people have told me that I was faking my seizures for attention.

I understand completely :)
 
Hi Jeileen193, welcome to the forum. :hello:

I don't have epilepsy, my wife does. The last decade has been quite the rollercoaster ride. Sometimes, I feel like George Jetson screaming "Jane! Stop this crazy thing!"

Make yourself at home here. :)
 
Hey Jeileen193, if this is your first message board you chose a good one. The word guinea pig has come a few times here so I'm sure there are people who relate to that aspect. I've got to say that this is the place where people seem to understand if it's epilepsy related.

Welcome, Check out what the site has & enjoy it.
 
Hi Jeileen,

Welcome!!! You will be really glad you came to our house!!! Everyone here is so nice and it is truly wonderful to talk to others that actually do understand!!
Everyone is so supportive and I have learned so much. And it is lots of fun as well. I can't say enough wonderful things about our family here! So sit back and jump in and Buckeye will bring you some coffee or tea! Thank you to Bernard for building this house!!!!

Michelle : )
 
It was so good to hear from all of you and to know how many of you do understand, as that truly is an amazing feeling. This week things have been a little more difficult as i became "intoxicated" with my medications last weekend, so I had to have my meds changed and I'm not adjusting to well to the change. This time around, I am just having bad side affects to changing my meds. Every other time I have changed the dosage of my meds, I have had side affects, sometimes their pretty bad but for some reason, this time they're the worse it's ever been and I cant understand why. I guess everytime's different and it's hard because I changed my meds on monday and it's now saturday and i'm still not doing that good, so i hope this is all worth it. Because i dont want to change things again. I hope everyone else is doing well!!!
 
Hi Jeileen - My daughter is 16 and started having seizures at the age of 14. She too was put on meds after the first two seizures, and WHAM started haveing awful side effects.

Now two years later, she is not taking any meds. She is doing neurofeedback which has reduced her seizures tremendously. We have also altered nutrition, give supplements that support brain health, and she uses a natural bio-identical progesterone.

I have found when I approach the neurologist with informed researched ideas, she is open to us experimenting. I like that. My daughters quality of life is so much better these days since she isn't dealing with additional issues.

I hope you find stability soon.
 
:cheers:

The coffee is ready! I also have tea and cocoa if you prefer.

Have a seat and rest here for awhile. It sounds like you have had a tough week and could use a break. I hope you find lots of helpful information here, I know that you will find support and that all important - "I understand"

Myself, I am 47 with tonic-clonic sz since 20. Pretty well controlled now by meds. I count myself as one of the lucky ones as I have only ever needed two epilepsy meds.

:cheers:

p.s. A personal GREAT BIG THANK YOU for your volunteer service with cancer patients. My Mom and Sister were diagnosed two days apart in February. Thanks to the staff and research at their hospital, they are both doing fine right now. My Mom is recovering well from her breast cancer surgery and is cancer free for now. My Sister is almost done with chemo for her lymphoma that looks like it is going into remission.
 
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