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.
Thanks, jennyc
Fri, 10/21/2005 - 21:30Topic: Teen Zone
I am not sure I'm responding in the right spot, but I wanted to thank those who wrote back to me concerning my niece. She's having a terrible time sleeping, she wakes her mom, so neither is doing well right now. A second doctor's opinion is weeks away. We're gathering information like crazy, but we feel overwhelmed....scared...very, very tired. Nothing new to most of you, of course. Is there a better forum for me someplace else on the net? I cannot know what those who have epilepsy know, but I want to support my niece. Thank you very much for writing.
Hi Episauntie
Submitted by jennyc on Sat, 2005-10-22 - 07:37
Hi Episauntie, Glad you found our messages. This is the only forum I have actually been on, I prefered this over the other few that I looked into, so I can't really say. What I can say though is that I have received lots of help and encouragement from this forum. One of the most important things is to try not to panic as this can aggravate your niece's condition. I couldn't sleep in the beginning either. As soon as I felt myself drift off to sleep I was screaming to my husband to help me, telling him that I was having another seizure (Pure anxiety). This continued for about 5 weeks, I was lucky if I was getting 3 hours sleep a night. It was a vicious circle. In the beginning it consumes you, you eat breath and sleep epilepsy. I was reading eveyone's posts in here and thinking "How can everyone be so cheery and accept what is happening to them?" I thought it was the end of the world. It isn't!!!!! I know what you are all going through, my first posting I wanted answers straight away and thought I would be cured within a couple of days right? - wrong! The truth is it takes time to get over these feelings. You must remember that everyone is different, what works for one person may not be great for the other. Have you tried reading other peoples blogs? I find this quite settling to know that there are other people out there like me and sometimes along the way you think "oh right, that's why that happens!" In addition, have you thought about counselling for your niece? My work are sending me for counselling to help me get through this. I would imagine her Doctor should be able to help with this? You may have already found this website but I thought I would send it just incase. http://www.epilepsy.org.uk/ Your niece could always chat with other kids her age to help her come to terms with epilepsy? This website has information for teenagers and you can also post questions to the Epilepsy advice and Information Officers. I don't know if I am answering your questions but at least you know that all your worries and concerns are normal and happen to all of us when Epilepsy rears its head. Best of luck and please keep in touch and let us know how you are all doing. Jenny