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.
Need advice and support. My bf suffered from NORSE and lost memories of last 3-4 years of his life and me too
Mon, 04/17/2017 - 16:15Topic: Family & Friends
My boyfriend of 3 years, suffered from New Onset of Refractory Status Epilepticus in Nov 2016. He had to be put under induced coma for about a month to stop the seizures. Doctors did not think he would ever wake up without the seizures or if he did he would have major rain injury. When he woke up after a month of coma, he did not remember me and asked who I was. Since he only lost 3-4 years of his life, he remembered everyone else. However the next day he could recollect who I was but not the relationship part of our time. He still let me in and agreed that we might be in a relationship. It has been almost almost 6 months and until now he was taking an effort to get to know me etc. however, he is still unable to recollect anything about our relationship. I have been very supportive and not pressurized him at all. He feels guilty that how it must have hurt me when he asked who I was. Now, he has given up hope that anything from the last 4 years will come back to him, even though he sometimes is able to grasp some images of the time we are talking about but this happens only 10% of the times and its never a complete picture. His doctor also suggested him to move ahead and let go the idea that anything might come back. I am with him in all of this, but a couple of days back he said, he does not feel the connection the click which must have been there earlier, and that I remind him of the times he could never get back, which makes him feel empty and helpless. I used to talk about the past times and where and when we spent times together, what we used to do, what his life was apart from our relationship. He even complimented me that I am his memory these few months. It has already been very very hard to cope up but I am trying my best, since I do not want to stress him out I try to keep a positive outlook in all matters. So he needs a break from the relationship to see if he is ready for and said will let me know if he is not ready to get in a relationship with me, since he does not feel anything for me. I am devastated after this, however I kept my calm with him so he doesn't get stressed about it. I am giving him his space. But I need advice, what can I do to help him and myself more. I am clueless. I want to get an idea, if anything will ever come back, if it does then is it only the memories that come back (eg. the time we went on vacation) or the experience and the feelings we felt on that vacation also come back?
Thank you everyone in advance.
Comments
Thank you so much for your
Submitted by i_still_have_hope on Tue, 2017-04-18 - 12:09
Thank you so much for your advice. I really appreciate it. I am aware and have accepted that I am unfamiliar to him and it may never be otherwise. I am not even asking for commitment. I just want him to give up on hope (not about us, in general in his life). At the same time, its hard on me too and I am trying to figure out a way to cope up with it. I am probably going through something your ex-wife must have went through. We were great friends too while in the relationship. If you do not mind me asking, like you were able to re form the bonds with your friends, were you or is it possible to have that bond of friendship with your ex-wife? or it is awkward since you know that she was your wife and its different than being just friends? Its totally fine if you do not wish to answer. I am trying to figure out how friends and family is able to cope up with these situations. Thanks.
I know it is hard on you just
Submitted by just_joe on Sat, 2017-04-22 - 11:56
I know it is hard on you just as it was hard om ,y family and my then GF. I was out for 3 days and the doctors had done everything thy could. Mom kept praying. It took talking to her and lot of years to put all the pieces together but I still don't remember some of the people I had living in my apartment or what happened to them. But my life went on. I had another situation land in my lap and I had to be the memory of my partner and still have to at times. You see he had a bad heart attack and died. The cardiologist had the paperwork in his hand along with the pen and was going to sign the death certificate When he came back. Every have your computer go down and you have to reboot it??? All your files are lost WEll not really they just got jumbled up with other files that went somewhere else. It took time but those files are still in his head and being found from time to time. He has remembered a lot of the things we did together and knows what we did and how we got together. But it took years to get that back. He knows and has known about my epilepsy just like I know about his heart attacks.
When I was 30 I was diagnosed
Submitted by DaganL on Mon, 2017-04-17 - 19:21
When I was 30 I was diagnosed with epilepsy. At that time I had several seizures and lostmemories back through childhood. I don’t remember waking up in the hospital or who Iremembered then. My ex-wife was mymemory for all the questions the Dr.’s asked or other pertinent info. She told me of our life together there werevery few memories I had of any of it. Five yrs worth with her. I neverreconnected with my wife, now ex-wife. To this day she is a stranger. I know her only as my son’s mom. Outside ofthe bond with my parents, sister and son I have only feelings of familiarity withothers. But my friends and I have formednew bonds based on old bonds if that makes sense. My current GF has been my memory when seizures happen. I have her go with me to appts. to answer thedr.’s questions because I can’t. Medicationhas lessened the toll the seizures take on my memory but it’s still spotty tothis day. I have missing memories of mycurrent GF. I do have memories come back. Sometimes for good. Other are fleeting. I think since I just remember it, it willstay. It doesn’t. I have felt all those feelings you described of him. They still cling with me but I deal betterwith them every time I face them. Ithas now been 7 yrs with various meds, docs and now an implant so I will giveyou the advice that the 6 months that has passed will only be the blink of aneye as he deals with this. I grapple with asking or expecting someone to commit to mewhen they could be gone from memory from a seizure(s). He may grapple or already be grappling withthat issue.