I sure hope you can help me because everyone else I have tried is clueless, even my neurologist. Before I have a seizure (status tonic-clonic) I have an aura (a warning that a seizure is going to occur) that is scary to endure. Is there a way to calm down and try to relax so the aura won't bother me as much? I see flashing colorful strobe lights like a firework display. My vision gets distorted so I cannot see, write, etc. I now start seeing hands and arms reaching towards me trying to get me to follow them. They are like a black shadow. This all started when I changed to another add-on seizure medication. Each aura changes when I change medicine. I was wondering, since the whole right side of my brain is removed except a small section of the occipital lobe (this part controls the sight and paralysis) could this be causing the strobe lights and other auras? Please help me. When I get upset the seizure is worse.
I'm going to answer your question to the best of my ability, but please understand that I am not trained as a neurologist. Please take my response, review it with your neurologist and get his or her OK before trying any of my suggestions.
The auras come before your seizures and are a warning that a seizure is to follow, but they are in and of themselves scary to you - and understandably so, from what you describe. I believe, though, that it is possible for you to change your thinking about and your response to the auras you experience.
As the aura is beginning to occur, can you begin to "talk yourself through it"? Could you try saying to yourself, whether out loud or silently in your head, "OK, here it comes. I'm beginning to have an aura. I have had them before, I know what it is, I know that it won't last long, and I know that after my seizure I will be OK." Remind yourself that the aura, in and of itself, is not harmful to you - it is your reaction to it, the fear you feel, that is unpleasant. You could emphasize to yourself that the shadow hands and arms are not real, but are a part of the aura - a part of an aura that will soon be gone. Compare it to seeing a scary image on TV - yes, it's scary, but it's not real. You could even try to imagine that the hands and arms are attached to someone you love and feel safe with, someone who is reaching out to embrace you, to hold you and keep you safe through your seizure.
When you have your next aura, notice the fear you are feeling - how much, on a scale of 1-10? OK, now, a minute later, how much on a scale of 1-10? Probably it has changed, because feelings do from moment to moment. Whether the amount of fear you are feeling has gone up or down is not the point. The point is that it has changed and is not static, and it will change again, and again, and will ultimately go away. Remind yourself of this, over and over.
You could begin to view the aura as your "friend" - after all, it is a warning, and so it allows you to prepare for seizure - to lie down on the floor clear of any objects on which you could hurt yourself, for example. Since this is by far preferable to falling and injuring yourself, which can happen when there is no warning, the aura really does serve a useful purpose in your life.
Another possible technique to try is to prepare ahead for your next aura by "practicing" for it. Mental imagery is an incredibly powerful technique, and you can use it to your advantage. Picture yourself having an aura, yet feeling as calm and secure as you do in your safest, most serene moments, aware that it is an aura and nothing more, nothing that will harm you, nothing that will last more than _____ amount of time. The more details you add to the mental picture (where are you? what are you wearing? what sounds do you hear? What do you feel underneath you on the floor?) the more effective it will be. Practice "seeing" (experiencing) this image in your head as often as you wish, and see if it helps to make you calmer the next time an aura actually does occur.
Finally, be patient with yourself. It is normal to be scared by an experience that is unusual and over which you have no control. Some auras may be scarier than others, and that too is normal and OK. You may wish to look for a counselor or hypnotherapist who is experienced in helping people learn to overcome panic and anxiety who can work with you in person on techniques such as the ones that I have described.
Good luck. I hope these suggestions are helpful to you. Again, please review them with your doctor since I am not a neurologist.