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How do I cope with temporal seizures?

Hi, I am f 24 and I am new to epilepsy. This will be a long post so please bare with me. 😀

10 months ago I started having some type of episodes, but I thought they were panic attacks or some sort of hallucinations. I never thought that this could be a type of epilepsy. After a few sessions with my therapist she persuaded me to go to a neurologist and check what was happening (I was scared of course so I was delaying the check-up for a few months).

Let me first explain what type of episodes I have. It is sort of like a very intense dream flashback - a dream that I never dreamed comes back to my mind. It lasts for a few seconds (3-6) and I don't remember it after it ends. After that, I become nauseous, like when the plane goes up and you feel your stomach going up. I never throw up, I don't become unconscious, I just feel bad in my stomach. Immediately after the nausea, a slight headache starts, and sometimes it lasts during the whole day, sometimes it ends in about an hour or two. It's not a very bad headache, I've never actually experienced a migraine. Just to mention, I never pass out, lose control, or become dizzy. I am not 100% present with my mind at the moment of the episode, but I am let's say, 90% present and aware.

It happened to me while crossing the street, working, exercising, being at a party, being alone at home, being with friends...... It can happen to me literally anywhere, but I still maintain my consciousness during the episode (90%, not 100%). After the episode, I feel.....weird? Like something is not right. Imagine somebody changes something small in your room that you sleep in every day, and when you go inside, you feel weird like something has changed but you don't know what. That's how I feel after the seizure, and this feeling lasts until I go to sleep. The next day it's like nothing happened.

These seizures are happening to me 2-3 times a month. It's been happening for 10 months, but in the first 5 months, I thought that it's a normal thing that is happening to everybody and that it's due to stress. I never actually did the whole research thing because I didn't know how to explain it. I was looking for derealization symptoms and depersonalization, but nothing was relatable to me. Until I finally stumbled upon a forum for epilepsy and I saw that a lot of people had these symptoms.

I was tracking these seizures for about 3 or 4 months, I thought that these were due to the lack of sleep so every time I had a seizure I was grading the sleep that I had the night before, and in 80% of my seizures I had a very bad sleep. But in those 20%, it was an 8/10 sleep, so that started to make me worried.

I've had 2 EEGs, the first one showed some spike of theta waves and the second one was a bit better but still had some suspicious activity and spikes. My neurologist told me that I am having temporal seizures, but I still have to do an MRI and that scared the shit out of me. My MRI appointment is scheduled in about 10 days or so. I haven't been able to sleep because of this. I hope that I don't have a tumor. I don't want to think about this but I already excluded some of the reasons why I have these seizures - I've never had a head injury, epilepsy does not run in my family, I've never had a meningitis or something like that...I started taking lamotrigine 25mg a few days ago, and the fact that maybe I would have to be on pills till the end of my life scares me. I don't want to do it.

I've had a stressful life with two deaths in my family (but these events happened 8 years ago), I've also been very anxious throughout my whole life and depressed in these few last years. I am starting to think that my mental state is the reason for these seizures. I am never relaxed and I also have ADHD so my mind is very hyperactive and it runs all the time. And my sleep's the worst. I sometimes sleep 3 hours per night, sometimes 8 but I wake up a few times throughout the night; I can also go without sleep and still function somehow throughout the day.

I am trying to have a healthy lifestyle, I used to drink and get shitfaced but now I've decided that I'm gonna cut alcohol. I exercise 3-4 times per week and eat a lot of fruits, vegetables, and raw nuts...I rarely eat meat, and I stopped eating anything fried a few months ago. No matter how much I try to be healthy physically, my mental state could get fucked up at any moment and that throws me in some sort of spiral which I guess, it's the reason for my seizures.

I am still new to this and I had just started getting used to the fact that I have seizures. What if it happens while I'm driving? Or when I am abroad? Can it get worse? How do I fix this without taking meds till the end of my life? What should I avoid? How do I cope with the anxiety and fear of having an MRI? Most people think that the machine scares me, but actually, it's the result that is scaring the shit out of me...Do you have any tips for me, anything that you wish you'd known while you were in the beginning of having seizures?

I would love to hear your advice, tips, or anything...Sorry for the long post and thank you for reading it.

  1. First, take a deep breath. This is likely going to be a long journey. You are actually starting out way ahead of many. It sounds like you have a diagnosis which is a great place to start.
    #1 If at all possible, get yourself to an epilepsy center. Most neurologists mean well but, they just don't know what they are doing. In 7 years, I went through as many neuros and as many meds before getting myself to Stanford. I wish I had started there.
    #2 An MRI is nothing to worry about. Not a big deal at all. I've had over a dozen and usually I just fall asleep.
    #3 It's a really hard adjustment, but stop driving until your seizures are under control. My denial was so strong I nearly killed myself in an accident. I didn't drive for two years. That was 33 years ago.
    #4 Taking meds sucks, but if they work, it beats the alternative. I've been taking meds for almost 40 years. I'm sure I'll be taking them until I die. Again, it beats the alternative.
    #5 Don't settle for having seizures. I have temporal lobe epilepsy, and for years my neuros were OK with me having seizures. That's not OK. There are lots of drugs. Vim Pat (lacosamide) is the only one that ever worked for me and I've taken lots of different ones and had brain surgery twice.
    #6 your seizures don't sound unusual to me at all. It's weird stuff. I used to spin around and tap people on the head.
    #7 For sleep try taking Skullcap (chinese, herbal) 850mg, and or L-tryptophan 1000mg. Both are all natural and available at any health food store. Sleeping pills don't work and pretty soon you can't sleep without them.

    You can do this, but settle on the fact that you have to be your own best advocate and that means not giving up and not taking no for an answer. Good Luck! You will get through this!

    1. Hi,
      Hopefully one of my messages that I posted today will help you as I mention how I have been controlling the auras from getting worse.
      Cath 5

      1. thank you so much for sharing your story and journey with us - we're so happy that you've found our epilepsy community! Though you've had ups and downs within your journey it's great to read that you're able to prioritize your physical fitness and healthy eating. It is absolutely normal to have lots of questions when being newly diagnosed! Here are a few articles onsite that I think might be helpful to you. 1) 2) 3) 4)

        I hope this helps! Wishing you all the best, and please know we are here for you! Warmly, Kailah (epilepsy team member)

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