newbie here

Hi Phyl, I'm glad you joined the site. This is a great place to make friends and share experiences. Like you, I feel lonely and depressed a lot. I do take an anti-depressant, which has helped with the depression some. I haven't read any books like you mention, but there are some listed on the "shop epilepsy.com" site here - <a href="http://shop.epilepsy.com/">http://shop.epilepsy.com/</a> . If you click on the link, and then look on the right hand column, there are some books written by people who have epilepsy. I think I may have to read some of them myself. Have you looked to see if there is an Epilepsy Foundation office in your state? If there is, they may have some support groups. How did your visit go with the doctor on Monday? Write and let us know. ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Hi Phyl, Sorry to hear you're having such a difficult time, but keep trying to keep the positive outlook. I can understand and completely relate to the social problems having this can cause. This is a great site to come to for a lot of things....even if all you need to do is vent. I can't think of any books offhand, but I've found a lot of information on this site and on the Epilepsy Foundation of America sites. Usually, on here, you can find people with more personal experience who can relate to issues you're experiencing. I have temporal lobe seizures which are also catamenial (related to my menstrual cycle). They used to be fairly brief, but have recently turned into grand mals, due to a medication change. I've had seizures for 27 years. I'm hoping the grand mals are not something that is going to continue. If I hear of any books, I'll let you know. Keep us posted on anything else you may hear about your diagnosis. Welcome to the site...you're definitely among friends here. Peggy

Hi Phyl, I also still feel like a newbie as I am continually going through new aspects of "E" My diagnosis was about 1 yr ago when while sleeping I had a grand mal seizure. When this happened I was angry, depressed and felt betrayed by my own self.I had been having "episodes" prior to this which I now realize was TLE(temporal lobe epilepsy) this affects me in the area of language and is in my left temporal lobe, I have complex partial seizures which make me unable to speak or understand(for 20 seconds to 1-2min.) and so far the medication has reduced them but not controlled-whew.... always a big explanation. Although, I realize that there may be some social stigma involved I also believe very strongly that as in many neurological disorders this results from little understanding and knowledge. Prior to my contracting this I am embarassed to admit that I thought that only Grand Mals were epilepsy. To discover that this represents such a minority in "E" was a real eye opener to me. I have a goal to try and begin a support group in my area but even more important is my desire to educate teens about the many various aspects of epilepsy. My compassion for them going through seizures which are undiagnosed due to lack of solid evidence (not showing on MRI,EEG,CT scans) results in many having been diagnosed with anxiety disorder and a myriad of others. My neurologist told me that he is still amazed after being a specialist in this field, how when a patient who has not been diagnosed after years of problems has a Grand Mal seizure (with all of its risidule issues) and once diagnosed simply says, Thank God,now I know what has been happening and I have a name. I have a greater respect now for all those ahead of me who have suffered/coped with strength and hope for many years. I also believe that in some offhand way it is a positive life experience because I have gained much more understanding and compassion for all people with various disorders. I also developed this late in life 49yrs and it was a real shocker to say the least but this is a great place to come and either learn,vent or talk with others paddling a similar boat. Also, fast forward to one year after my diagnosis and each day presents a chance to feel better and I do for the most part, some days not so much. Best wishes to you, Rita~