http://michellemasonrocks.blogspot.com/2015/08/i-didnt-know-i-was-having-seizures.html
I’m 41 years old, and for over 20 years, every doctor has told me there was nothing wrong with me, all my labs were fine (I have had SO MANY medical tests!), and labeled me a hypochondriac. My family labeled me a hypochondriac and lazy. I’ve lost count of the number of coworkers and associates who assumed I was a closet alcoholic or junkie (especially when they saw me walk into walls, trip, twitch, stop to think to remember my name or what day it was).
I do not share these labels out of anger or self-shame. I share them for the same reason I wrote this blog- maybe it will resonate with you. Maybe you have been called lazy, a dreamer, clumsy and will read the other symptoms and have an ah-ha moment.
Having epilepsy is a little scary, I admit. You know what’s worse? Having it and NOT KNOWING that you are having seizures. Not knowing really messed with my head, on a daily basis.
The depression, feelings of impending doom, paranoia, delusions, and thoughts of suicide that come with Temporal Lobe Epilepsy (TLE) can be *managed* when you know WHY they are happening. I am amazed that I am still alive after decades of crippling depression and the severe, almost daily, thoughts of suicide. Add in the lost jobs, lost friends, and never knowing what the hell was going on with my body, well let’s just say I had more than one very close call with the exit option. (see previous post, Staying Alive)
And that’s really why I wrote this very intimate glimpse into my life and my body. Undiagnosed epileptics are at an extremely high risk for suicide, and much of that is from the not knowing. If this post saves one life, it would mean the world to me, and I would bare my soul a hundred times over to save them.
All Things Chronic 
Only you know when something is wrong, and if you think there is something then no – especially your family or friends should have enough respect to support you. Jamie, who one of my blogs is for has epilepsy. I KNOW what I have. It doesn’t strike me out of the blue. To have that and not even know what it is, no wonder you were depressed. My daughter, after her second child had seizures, and for a long time had silent seizures where she would just stare off into space. for years they seemed to stop and then they started again. I know she has been seeing a therapist because other health problems have kicked in too. She’s 35 and that was the time when my bad health kicked in. I’d hate for her to go through this. You hang in there. Don’t let anyone get you down – ever.
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I am very happy that you have been properly diagnosed and hope that the treatment will make a big difference in your life. So often, doctors and loved ones aren’t truly listening because they have closed their minds to what you are telling them.
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How did they finally arrive at the diagnosis? An EEG? An MRI both? I ask because shortly after I arrived in Sweden I went to see a Neurologist for some symptoms I was experiencing. The Neurologist did a lot of testing, including EEGs and he told me that I had Epilepsy and prescribed medication for me. He was not very specific but he told me that my EEG, along with my symptoms pointed to a clear diagnosis. I experienced a lot of side effects because of the medications and he started to explore other options, including surgery. He then referred me to a specialist for treatment of Epilepsy and that is when the nightmare really started. The specialist was difficult to say the least and I never got the sense that she was listening to me or that she trusted me. I underwent more testing, including a week long hospital stay for observation. At that time I had 2 seizures and the nurses said they had gotten what they’d been after, some clear readings. When the doctor came, however, she said that the EEG did not show any abnormal activity and so I asked her about the EEGs taken by my previous doctor and she said they didn’t show any abnormal activity either. I asked her if this isn’t Epilepsy is there anything else this could be and she said no there is nothing else that can explain your symptoms other than Epilepsy and she continued with testing and medication trials for a while. At this time I also contacted my previous Neurologist and he expressed confusion over the whole affair, restating that the original EEGs did show Epileptic activity. Years into this nightmare I wasn’t getting anywhere (except severely depressed and stressed out) I still had seizures and on top of them tons of side-effects so I finally contacted my doctor and said I would like to see another Neurologist and she agreed. When I arrived to my appointment the new Neurologist informed me that she would not treat me, She launched into a 1/2 hour speech about how amazing my recently dropped Neurologist was and said that I did not have and have never been diagnosed with Epilepsy. She told me I had PNES and I accepted that and started therapy (I was ready to be done with the whole thing). That was the first I had ever even heard of PNES and since my husband was with me for all my appointments he assures me that he also never heard them mention PNES. I also have a written document where my first Neurologist states that I have Epilepsy. On top of that whenever I have been to the doctor since they continue to ask me what Epilepsy meds I am on.. If I have never been diagnosed why is it on record? The whole thing makes no sense and I sincerely hope you are getting the treatment you need.
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Sorry for the confusion, but this story belongs to the blogger who can be found at the link. Even though epilepsy isn’t thought of as a chronic pain condition, I thought it was important to post since so many patients spend years (and in her case, decades) trying to find the cause of their symptoms.
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Thank you for your blog post. I found you through a repost on painkills2. You have to be persistent with these neurologists, psychiatrists, etc. in order to pin down a diagnosis. Only you can know your body and this was still elusive. I tried to post on her site, but got bogged down in id verification.
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