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Understanding of family

Mon, 02/05/2007 - 14:25
Hi everyone. Have any of you had trouble with your family understanding that you have a physical disorder and not a psychological one? I feel my sisters think my problem is more of a psychological one instead of a physical one. In July of last year, I was diagnosed with Complex Partial seizures. Although I did not realize it at the time, my first CPS was in mid 2004. To my knowledge, I did not have another one until March of 2005. Since I have an uncle who has epilepsy, I suspected that was my problem. The doctors I consulted all said it was an anxiety problem. Before I saw the second doctor, I started keeping a seizure journal at the suggestion of a friend. The second doctor I saw did not read it. I knew there was too much correlation between my cycle and these events for it to be coincidence. These episodes seemed to have begun after I had surgery in late 2003 to remove an ovary and benign tumor attatched to it. I continued seeking medical help and was finally diagnosed last year. I told my family what the doctor had diagnosed me with. I still have trouble with getting my med level correct to stop the seizures. They almost entirely happen around the time of my period. I cannot seem to get through to my sisters that my main trigger seems to be hormonal. They also seem to have trouble beliving that it is epilepsy I have. In December, I had a seizure while cooking and burned myself badly in a couple of places. I was required to be hospitalized for 4 days. I had been asked to see my meurologist after discharge. While talking to both of my sisters about this, they both asked me if I was sure that it was epilepsy I had been diagnosed with. I was kind of offended that they asked me this. Of course, I told them yes, as it was what I had been diagnosed with. I sent them a link to the Epilepsy Foundation's website sections on partial seizures and CPS. I also told them while I know my symptoms are not the ones that are always portrayed as epilepsy, it is still epilepsy. Whether they look at the web site I do not know. I have tried for several months to get them to look at this site or the EF site. To my knowledge, neither have. I feel they should so they understand me a little better and because their children and grandchildren could develop this as well. Anyway, do amy of you have similar problems with your family? Thanks, Tlh64

Comments

Re: Understanding of family

Submitted by diana73 on Thu, 2011-07-28 - 15:52
hi- i'm sorry it has taken so long for somebody to reply to this. i too have a very similar issue w my family. they beleive it's anxiety attacks and haven't supported me at all since my diagnosis. i have three kids and am 38 years old. my seizure's were hormone related. i was sick and tired of trying new medications, tired of feeling sick (becasue seizures ISN'T the ONLY symptom of epilepsy (i had GI issues, nausea, fatigue, virtigo, muscle weakness and anxiety). after 19 months of research and not having a productive life i took it upon my self to get a hysterectomy, removing my one ovary and utereus. i am 9 days post-op and unfortunately am still having some seizure activity in my sleep between 4am-11am. i will keep my results posted!  

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