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Abbygator

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Hi everyone,
My name is Abby and I am a 21 year old college student. I was diagnosed with temporal lobe epilepsy when I was 17, and so was my twin sister (strange, I know). They attributed it to us being born prematurely. Anyways, I have been having these horrible night time episodes that come and go and are affecting my life horribly. I used to call them “sleep paralysis” but I think they might be noctural seizures of some sort.

I’ve been having them on and off for 2 or so years. When I go through a phase when they do occur (which can last a week to three or four months) they can occur as frequently as three times a night. For the past month I have been having one almost every night. They only occur when it is around the time I should be waking up, or when I have already woken up and am trying to go back to bed (this is the most common). I realize I am awake and cannot move or open my eyes, but I will feel like my mind is “gripped.” Then, I will feel strong waves of electrical surges in my brain. It will feel like I am being shaken like a rag doll while I hear weird noises in my head (like electric pulsing or cowbell ringing) and they can come and go in waves while I lay helpless. If I try to open my eyes they roll back in my skull. Eventually, I can break free from this cycle. Sometimes I feel like I am going to suffocate, but I try to focus on my breathing. When I do wake up, I am so groggy and tired that I am practically unable to move and usually drift back into sleep, where another incident occurs. I have to keep trying to get up and move or else I will fall back into the cycle. What sucks is that when this does occur, even if it is at say 6 am, I can’t go back to sleep because another episode will probably occur. This also happens with pretty much every nap ever so I don’t take naps anymore. However, I will go through month long phases where I will never experience a single episode, and I can sleep and nap freely.

I also haven’t had a single temporal lobe seizure (30 seconds of extreme deja vue, hallucinations, and getting stuck in repetitive movements) in over a year and a half, but sometimes I do still get auras that lead nowhere. When my TLE episodes were at their worst, I was having up to 8 seizures a day. I've always had things like this come in dense waves, so this is also why I think the sleep activity is seizure like.
I used to be on topamax in high school but stopped because it made my brain foggy. I was on lamictal last year but I stopped because it took away my appetite completely. I haven’t been on any medication since then, except the concerta I take for ADHD. I think this might disrupt my sleep as well, which possibly exacerbates my symptoms. I also have an anxiety disorder but am not currently medicated for it.

Either way, I am terrified of SUDEP. I heard it occurs in young adults during nocturnal seizures. With the frequency of my seizures, I am scared one day I just won’t wake up or I’ll die while I’m paralyzed. It’s such a scary thought to me, but I can’t see a neurologist until mid may when I return from school, since I go to school in a tiny, isolated college town that only has an unequipped urgent care.
I’ve also googled my symptoms and have found nothing similar on the web so I feel alone. I just want to know if there are any seizure disorders with symptoms similar to mine, or if anyone else has experienced anything similar. This just really sucks.

Thank you so much for reading my rambling.
- Abby
 
Last edited:
Hi everyone,
My name is Abby and I am a 21 year old college student. I was diagnosed with temporal lobe epilepsy when I was 17, and so was my twin sister (strange, I know). They attributed it to us being born premature. Anyways, I have been having these horrible night time episodes that come and go and are affecting my life horribly. I used to call them “sleep paralysis” but I think they might be noctural seizures of some sort.

I’ve been having them on and off for 2 or so years. When I go through a phase when they do occur (which can last a week to three or four months) they can occur as frequently as three times a night. For the past month I have been having one almost every night. They only occur when it is around the time I should be waking up, or when I have already woken up and am trying to go back to bed (this is the most common). I realize I am awake and cannot move or open my eyes, but I will feel like my mind is “gripped.” Then, I will feel strong waves of electrical surges in my brain. It will feel like I am being shaken like a rag doll while I hear weird noises in my head (like electric pulsing or cowbell ringing) and they can come and go in waves while I lay helpless. If I try to open my eyes they roll back in my skull. Eventually, I can break free from this cycle. Sometimes I feel like I am going to suffocate, but I try to focus on my breathing. When I do wake up, I am so groggy and tired that I am practically unable to move and usually drift back into sleep, where another incident occurs. I have to keep trying to get up and move or else I will fall back into the cycle. What sucks is that when this does occur, even if it is at say 6 am, I can’t go back to sleep because another episode will probably occur. This also happens with pretty much every nap ever so I don’t take naps anymore. However, I will go through month long phases where I will never experience a single episode, and I can sleep and nap freely.

I also haven’t had a single temporal lobe seizure (30 seconds of extreme deja vue, hallucinations, and getting stuck in repetitive movements) in over a year and a half, but sometimes I do still get auras that lead nowhere. When my TLE episodes were at their worst, I was having up to 8 seizures a day. I've always had things like this come in dense waves, so this is also why I think the sleep activity is seizure like.
I used to be on topamax in high school but stopped because it made my brain foggy. I was on lamictal last year but I stopped because it took away my appetite completely. I haven’t been on any medication since then, except the concerta I take for ADHD. I think this might disrupt my sleep as well, which possibly exacerbates my symptoms. I also have an anxiety disorder but am not currently medicated for it.

Either way, I am terrified of SUDEP. I heard it occurs in young adults during nocturnal seizures. With the frequency of my seizures, I am scared one day I just won’t wake up or I’ll die while I’m paralyzed. It’s such a scary thought to me, but I can’t see a neurologist until mid may when I return from school, since I go to school in a tiny, isolated college town that only has an unequipped urgent care.
I’ve also googled my symptoms and have found nothing similar on the web so I feel alone. I just want to know if there are any seizure disorders with symptoms similar to mine, or if anyone else has experienced anything similar. This just really sucks.

Thank you so much for reading my rambling.
- Abby



Hi it sounds like your having nocturnal seizures.. thats how i feel.. most of my seizures i get only nocturnal and yea its very hard because you dont get enough sleep and thats something that triggers more seizures .. sorry ur having a bad time talk with your neuro or epitologist it sounds as nocturnal but to be sure talk to a dr..

And it does suck i get cluster of seizures.. and wake up more tired than when i went to bed.. so hope you get better.

God bless

Fer


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Hey Abbygator, welcome to CWE!

I agree that you may be experiencing nocturnal seizures. It would be great if you could have overnight sleep study done w/EEG to help determine what is going on.

SUDEP is a scary possibility for all of us. :( It's not completely understood at this point, but the most significant known risk factors for SUDEP are frequent and long-term experience of tonic-clonic seizures, and polytherapy (treatment with multiple anti-seizure meds). The risk is also higher if you are male, african-american, and abuse alcohol. So I think your risks are lower than you imagine. It might not hurt to check in with your neuro to get reassurance about this.
 
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