Dissociative Seizures - computer screen problems.

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Hi

Having had epilepsy for about 30 years, I have recently been diagnosed with having "Dissociative Seizures" too. My neurologist has confirmed that the epilepsy is actually being managed by the original dosage of medication, these other type of seizures cannot be managed by meds.

This has become very disruptive, and currently I am unable to stay in front of a computer screen for very long as it just triggers me off (will leave soon smile ). I am currently on a phased return to work. I am learning techniques to manage the seizures.

Anyone have any suggestions re managing screen usage, and dissociative seizures in general? 

Thanks

Mark

 

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11 Replies

  • Posted

    Dear Mark,

         Concerning the time you are in front of a computer screen that can trigger a seizure try wearing rose color light sensitive glasses. I bought a pair on line from a company in the U.S.A. They help me a lot when using the computer and with flue sent lighting as these trigger my seizures along with flashing lights, fast editing, lighting strikes, glares, bright lights etc...the list goes on and on. The glasses filter the blue part of the spectrum. Dissociative seizures management, DEAD and a multitude of other names including episodes is a hit and miss like hangernades and horseshoes as my dad would say. They come and leave when they please! I have live with them for years now. 

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    • Posted

      Dear Mary

      Thanks for this. After having a colour optics test I was prescribed some green glasses about 18mths ago when they initially thought the increased seizures were due to epilepsy (they now know that these ones are not epileptic). The glasses are calming, but haven’t stopped the seizures. I’ll investigate the pink ones. Can you recommend the company?  It has been a full on last few months. From what I understand, seizure management seems to be about “dancing” with it as part of life. 😉 unlike the epilepsy there’s no medicine for these. Do you find that you are more susceptible at some times than others, or are the flashing lights going to guarantee a seizure? Really appreciate your feedback. I’d never heard of disassociative seizures before, so having been learning a lot about it. Mark

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  • Posted

    Dear Mark,

          Look on line and you will find several companies selling glasses for light sensitivity, rose color glasses. My son in law order my glasses for me my the U.S.A. I live in Canada. I wear them for watching T.V. going walking in bright sun light and at the library when using the computer. If you find that your trigger is flashing lights exposure than a seizure will most likely happen. It has with me. I live with the fact that these seizures will happen any where any time. I just continue with life...we need to.  Flue sent lighting triggers mind. Lack of a good night sleep, too much stress. Life happens so just let it. The brain is a wonderful design by our creator. Who can know it fully but only him. I'm hear to help.

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    • Posted

      Thank you Mary. I really appreciate this. It is great to hear from someone who is going through the same thing. I have  been really blessed by the support my wife, friends, work & the medical profession continue to give me. 

      I know we are “fearfully & wonderfully made”. Struggling a bit with accepting the seizures. The “ out of control” feelings keep rearing their head which can contribute to more of them (as well as the physical factors too). The seizures are a horrible experience, so I am trying the “dance with them” & “stay in the room” techniques. How did you get to the acceptance stage? M

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  • Posted

    Dear Mark,

          How did I get to the acceptance stage? Four years is a long journey to travel down when the professionals are treating you like a " nut case".  My mother was epileptic, my oldest son, one of my daughters, my youngest son who wants to do nothing about it ( 25 years of suffering). It has rippled down from my mother. When I was little I use to hold up my mother's head so it would not bang on the floor. My neurologist is now saying it seems to be both epileptic and associative seizures. I had a sleep deprive EEG on March 2nd. Such is life! The acceptance came when I came to believe that these seizures just happen and are not who I am. I make my life happen and it is not by living in a bubble of second guessing myself as to my mental health. Before these seizures I had a life and I'm still having one. They happen and life is too short to cry over spilled milk per say. Epileptic seizures have meds to control them, these seizures do not except taking Ativan  just when they start. I take 2mg that pull me out of them quicker.  I have auras to warn me so I can lay down on the floor. It is the feeling of " not having  control" over them. I just it on with it, life. Techniques to manage the seizures. They are nasty and not a dance partner. I have had many ambulance trips to the ER when out and about with my dear daughter as she can not just put me over her shoulder and carry me home. She takes care of me when they happen at home. When they happen when I'm alone and she is at work, I lay on the floor and they just happen. Got to just get on with it. 

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    • Posted

      Dear Mary. 

      This is so helpful. I understand what you mean about second guessing yourself.  Thinking whether in my head. But realise it isn’t - especially when I hear about others having it too. Just trying to get on with it. My doctors think the frequency will reduce. The rest seems to be about “management”- everything I read & hear from people. Ultimately, you’re right, we have to deal with it some way. I want to live life, and not have this dominate it. Just trying to process it all. Good on you for being positive!! Keep going. These seizures do not identify who we are. 👍😀 Thanks again. Keep in touch & let me know how you are getting on. M

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  • Posted

    Dear Mark,

         I live moment to moment not knowing when a seizure will suddenly happen. I had one the other day in my living room. My daughter and I were listening to a Bible video on her lap top. She had the screen pointed away from me. Suddenly I felt very dopey and close my eyes. There was  my aura  beginning, swirling green. Moments later I went into a seizures, out of my head with it. My daughter felt so bad. She said maybe the side flickering of the lap top cause it. I really can't say I told her. She gave me 2mg of Ativan  as soon as I told I could see my aura. Life can be bitter at times but we do go on with it. I use to become depress for days after but no more. They just happen. I think if I wore a t-shirt for this it would say " just get on with it-life". What happens when you have these seizures? 

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    • Posted

      Hi Mary

      Apologies for the delay in replying. I am sorry to hear about the laptop event, it sounds like that it may well have be triggered the seizure. Computer usage definitely affects me. My work place are planning to replace my current monitors with a higher refresh rate to see if that helps.

      The seizures I have been experiencing are far less severe, but extremely frequent. They are short in duration and I would describe them as being temporally switched off (think of turning a TV on and off really quickly, or when it has interference). These can be shallow or deep in terms of my awareness. The "deep" ones result in my eyes rolling in my head and the next thing I know is that people are staring at me. It is like awaking from an operation.

      The current ones, don't result in me being unconscious very long. My eyes flicker for a split second, and usually I can hold it together enough that people don't notice. They daily come in batches and get progressively worse in length / frequency - particularly if I have not had rest / managed stress etc. In themselves if they were single one offs, whilst not nice, it would be more of an irritation than anything. However, the frequency of them is draining. It is like someone consistently slapping me on the face (albeit very lightly) and not stopping. It is hard to concentrate / focus. 

      I am currently learning breathing / mindfulness techniques. These provide a break from the seizures. My doctor advises that when your brain is focusing on these exercises, the part of the brain that triggers them cannot operate at the same time. The break doing the exercises, certainly help me prepare for the next round of seizures that starts when I get back to the computer (a bit like when a boxer goes back to his corner between each round!). I have read/heard that people who suffer from PTSD (such as ex.military personnel) can also experience dissociative seizures (ranging for the ones I am currently experiencing, to grand mal seizures). So CBT can help with people working through traumatic events.

      Try these relaxation exercises- 

      www.youtube.com/watch?v=6053dnI4Rxg[/b]

      www.youtube.com/watch?v=xcjTF5BxKdo[/b]

      The medical staff advise me that it pretty much is about management. Has your doctor suggested any other type of treatment? It sounds like you have a faith too, do you find this helps you through this difficult time?

      Lets stay in touch. I really appreciate what you have shared.

      M

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  • Posted

    Dear Mark, 

     I do have a faith. I am one of Jehovah's Witnesses. I have a hope of everlasting life on a restored Paradise Earth in the near future. When Almighty God's promises for mankind will come true such as " no one will say I'm sick". 

       My work place wouldn't have me having these seizures. I had three at work on night shift. I am on Long Term Disability until my retirement next year. My seizure over take me. I have tonic and clonic with a aura. My results for my sleep deprived EEG are in and I was given a appointment with neurologist on May 30th. I was told it is not urgent. Life happens. 

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    • Posted

      Hi Mary.

      I can only imagine how difficult this is. It feels a step up from what I am going through. It sounds like you remain positive though. I am hoping that the results from the test will help suggest alternative ways of managing it. I have heard CBT & EMDR treatment can help - this is what they are offering me, although I am warned that in the first instance it may get worse. At the moment I am flipping like a pancake, without falling on the floor element. I will certainly offer a prayer for you. Do keep in touch smile

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