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Sheeba

578d

Who has been told in the process of being diagnosed that this is all in your head or you are doing it for attention. When I was being diagnosed with epilepsy the one doctor told me that it's all in my head. However EEG said otherwise. They tried diagnosing me with PNES or psychogenic non epileptic seizures. That didn't fly. My seizures weren't produced by stress or mental problems. They were not provoked on purpose. They were caused by a head injury from a car accident in December of 2002. I have complex partial seizures and once in a while I have an atonic seizure. The kind where you just drop. Why would any doctor accuse their patients of being a faker with seizures?! Who'd do this for attention? I have dealt with them for almost 20 years now. Been on as many as six meds at one time. Been in the EMU twice. Have a VNS. Take three meds. I still have seizures despite taking medications. So they are refractory seizures or medically resistant epilepsy. I have lost friends and family from the epilepsy. People judge me all the time. Until they have walked a mile in my shoes they have no right to judge me. I wasn't a candidate for temporal lobectomy. The testing for that was a waste. I can't work or drive. No one who doesn't have epilepsy is really aware of how much it can steal from you. I have lost a lot of what I used to be able to do.

Top reply
    • SkyeFairy81

      570d

      I was told I had pseudo seizures because they came out of nowhere after I had my doctor, 2 years later and multiple EEGs I was diagnosed with Epilepsy and the EEGs showed I was having real seizures. I still have them but I am currently in a flare up where I have several a day.

    • SkyeFairy81

      570d

      I was told I had pseudo seizures because they came out of nowhere after I had my doctor, 2 years later and multiple EEGs I was diagnosed with Epilepsy and the EEGs showed I was having real seizures. I still have them but I am currently in a flare up where I have several a day.

    • Sheeba

      573d

      My seizures are under control now. But it has taken 15 years to get them that way. I have 6-8 a year. I used to have that much in a month.

    • nightquest

      578d

      Me too. My first neurologist was not good. The one I have now, I've had her since 2015. She is amazing. I'm so sorry you're seizures are that bad. 😕

    • nightquest

      578d

      Hey. Same thing happened to me in June of 2003. My doctor also said that I might have pseudoseizures. He apologized when the video eeg showed they are real.

      • Sheeba

        578d

        @nightquest my seizures were never psuedo. It was a really complex case. I started having seizures three weeks after the car accident. Had no neurologist so to speak, and no meds. We were packing up to move from Youngstown Ohio to Phoenix AZ. The seizures were caught while I was sleeping by my aunt. So when I got to AZ I had to go through the ER and get referred out to one. What I got was some doc from barrow neurological medical clinic who wanted to have all the big cases not the diddly ones like mine. After putting up with his nonsense for several years I went to my primary care physician and asked for a different neurologist. He referred me to the one I have now. I have been with this guy for almost 16 years. I had several seizures in his office in front of him. Which got the permanent diagnosis of epilepsy.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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