Second seizure, anxiety and worry

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kelsoanim

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Hi everyone, I just had my second grand mal seizure while I was camping on Sunday. Fortunately my wife and family were nearby and they rushed to find help and drove like maniacs down the mountain to meet an aid car half way. I was rushed to the ER in a small town. The whole experience was pretty terrifying for me though. I remember telling my wife I was having trouble focusing and then started hallucinating/ seeing lights and shapes, then I guess I collapsed and started convulsing. When I came to I was being rushed down the mountain roads in a car with my wife, mother and sister. I was saying I thought I was dying and they were somehow being calm and telling me I was okay. My head felt like it was going to split open and my body hurt all over and I was nauseous and dizzy. After and EKG and CT scan and some IV fluids at the ER they released me and we had to take the long drive back to Seattle.

I am trying to get an appointment/referral to a neurologist but it has been frustrating. The first neurology department I got referred to doesn't have an opening for almost a month. I am trying to get referred somewhere else in the hopes that I can see someone sooner. I am really worried that it will happen again soon or that something bigger is wrong with my brain or body. Loosing consciousness in that way and coming to only a little at a time and thinking I am dying is a pretty traumatic experience, day to day stuff doesn't seem to matter much right now. It's really difficult working now, I don't really care much about what I am doing and wish I didn't have to go. I took the day after off to recover but I am taking today off again as PTO because i am just too anxious and worried and still feel a little tired and dizzy. I am quite worried about the dizziness because it came before both times I've had seizures, the first time being 11 years ago.

I know many of you have seizures much more often so I'm sorry if I seem to be complaining about a more minor experience. But I have dealt with dizziness and light headedness ever since my first seizure and have seen many different doctors about it, but they never found anything wrong with me. I had chocked most of it down to anxiety recently but now that I've had another seizure it's got me all worried about it again. Sorry if I am going on about this, I just have so many thoughts that are going unanswered. My wife has also been ill with a worsening of Gastroperesis for the better part of this year and it has already been taxing on us. It is a difficult balance to try and be strong for each other when we are both feeling dismayed by what has happened. Any advice or response would be appreciated. Thanks in advance.
 
hi kelsoanim,

It sounds like the lights and shapes you had been seeing were probably an aura or warning before the seizure.
You had a traumatic experience so your not complaining about the seizure you had.

For an appointment just keep calling and have them put you on a list for cancelations to call you and make an appointment.
 
Thanks for the understanding Belinda. Unfortunately, both times the lights were seconds before the seizure, though there were I think some darting eye movements maybe 30 seconds before. Maybe that's the main thing to look out for next time. I will definitely keep calling the neurologists til I get a sooner appointment. Really wish it wasn't so difficult though. My wife has been going through similar problems trying to get approval from her insurance company for an operation that might relieve some pain. Waited almost a month and ended up having to call herself only to have it denied.

I have another small question, does anyone else have sore, "dizzy" eyes days after the seizure? My eyes still hurt a bit and I feel a bit dizzy and it has me concerned.
 
Welcome to the forum, this is a great place for support and answers. It's a traumatic experience, so don't feel like you're complaining or comparing yourself to anyone else's experiences. We are all similar and different, but support each other just the same. It's a good thing you had your family there to help out! Before having a TC, I have had dizziness/vertigo and can't focus. It's a warning and gives a few seconds to sit before falling. Perhaps your postictal dizziness is your body's way of trying to recover and stabilize. Seizures are pretty physically hard on the body. Allow yourself time to rest and heal.
 
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