Panicking before a seizure and what to do?

Posted by tara22 @tara22, 21 hours ago

Hi to anyone reading. I suffer with grand mal seizures since I was 14 I’m now 24. When I get that feeling something bad is going to happen to me I go into a major panic attack can barely breathe now this is quite often yet sometimes I don’t go into a seizure it’s just the fear of having one and the pain of it starting. I was wondering does this happen to anyone a lot because it does with myself and I have never talked to anyone else about this and would it help with my anxiety because I’m an anxious type of person anyway with a lot of stress onto of it, to try get any anxiety medication off a doctor. I’m in two minds about it because I really feel like I can’t live the rest of my life like this… literally living in fear. I hope this message finds you well 🙂

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@tara22
Are you taking anti-seuzure medication? If so, have your seizures decreased in frequency and/or severity? Have you had an EEG?
Jake

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Hi. Yes, I’m on Keppra 2,500mg a day. They’ve been all over the place, last year I was getting double seizures and upted my dosage by 500. Yes I’ve had EEG’s done. It’s more the anxiety and fear that I can’t have a normal day to day life without worrying.

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Hi @tara22
This panic attack must be something terrible. Have you spoken about that with your doctor? It can be related to your epilepsy and also medications.
All my best to you!
Chris (@santosha)

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Hi, @tara22 - a few other members on Connect may also have some thoughts on panicking before a seizure and what to do about living in fear. If you've not yet met them, please meet @ehowey18 @abida @jenfossbru @lynette1975 @sdneb44 @cc001 @downsynsz @baa @dawn_giacabazi.

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@tara22 , I completely understand what you're going through. From ages 12-14, I experienced severe epilepsy myself, and I vividly remember how tough and overwhelming it felt. It can truly consume your thoughts, wondering when the next seizure might happen and feeling scared when they do. But please know that you're definitely not alone, and many others, myself included, have felt exactly what you're feeling right now.

One thing that helped me finally overcome my anxiety was leaning on family members and friends. Having someone to talk to, someone who listens and cares, can make a world of difference. Sharing your emotions and thoughts with loved ones can relieve some of the stress and anxiety you're experiencing. I remember I used to worry about what people would think about me if I told them about the seizure related anxiety I had, but looking back, I realize that the people around me were equally concerned and would have appreciated it if I had talked to them more about what I was going through. My anxiety continued for years after my seizures stopped because I was trying to handle it myself. Having some deep conversations about my mental state with friends and family who weren't entirely aware of my anxiety issues helped significantly. Having grand mal seizures can be traumatic, so it will take time to handle your anxiety issues. If you need additional support beyond your family, Cognitive-Behavioral Therapy is also worth looking into.

I also remember worrying that the future looked uncertain and bleak. But there's always hope, even if it's hard to see right now. After lots of patience and perseverance, we eventually discovered a treatment that worked well for me. I'm now 21 and haven't had a seizure in 7 years.

There are countless other cases, like mine, where a situation that once seemed hopeless significantly improved with the right support and medical care. I encourage you to stay hopeful and keep advocating for yourself. You're stronger than you realize, and better days can and do come. We're all here rooting for you!

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@tara22
Did your EEG show any seizure activity?
Since you are having worry/anxiety issues I would think treating these problems is essential. Worry and anxiety may be seizure triggers for you and can lower your seizure threshold increasing your risk and also may increase their frequency and severity. Are you taking anti-anxiety medication & seeing a counselor to treat these issues?
I was asking about seizure medication and it's effectiveness because I was curious if your seizures could be psychologically induced (psychogenic, non-epileptic seizures PNES) instead of epileptic seizures that are
abnormal, excessive, electrical activity in the brain that interfere with normal communication between brain cells. However both conditions can exist together.
Have you ever been admitted to an epilepsy monitoring unit?
Take care,
Jake

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@tara22

Hi. Yes, I’m on Keppra 2,500mg a day. They’ve been all over the place, last year I was getting double seizures and upted my dosage by 500. Yes I’ve had EEG’s done. It’s more the anxiety and fear that I can’t have a normal day to day life without worrying.

Jump to this post

I understand the anxiety about having another seizure. For me, ultimately the only thing which helped was good seizure control. But ongoing fear is what keeps me from enjoying that cup of coffee, even now because caffeine is a seizure trigger for me.

I think that some anti-anxiety meds can actually lower your seizure threshold. And maybe you have already thought of this. But I would suggest that an epilepsy specialist, not a general neurologist, be consulted.

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