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Old 09-24-2018, 09:34 AM
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Hi folks- Newbie to epilepsy and the forum


Hi everyone,
New to epilepsy and new to the forum.
Brief Bio: Male, mid 40s-
a few weeks ago I was admitted to hospital with what turned out to be a series of partial seizures:
I said Déjà Vu to the doctor's as I couldn't think how to describe it, but it's more like "I've had this nightmare before" and I guess like when you have had a nightmare, and the next day images from it suddenly pop into your head and you feel a flash of the same fear. It's like a ramped up version of that, and it's a series of disjointed images that feel like they are on the edge of my recall but I can't grasp where I seen them of through them before. Its like images from a nightmare and I'm not sure if i really had that nightmare before or not. Sorry I'm still trying to make sense of something with no sense it, so that might be a horrible description! I have noticed today that it seems like there are visual cues in that I look at something and thing I've looked at that before and it starts from there.
I don't know if that makes sense?

Then a feeling of terror, sometimes funny sounds and it ends. When I had the cluster, they started an hour apart, then 45 mins, then half an hour down to 5 minutes apart. By that point I was fairly staggery and slurred between then and not thinking straight. Felt like I was thinking through cotton wool and missing large chunks of time.
So titrating up lamotrigine, just started 75mg today, however so far also had another 3 of the seizures today as well.
EEG showed some unusual activity, (wasn't explained and I was too out of it to ask questions) one of the other scans showed some slight scarring from viral meningitis but they didn't think that would be to blame.
Everyone was great in hospital, but feel completely abandoned now I'm out and not entirely sure what comes next for me. GP Has been great, but you only get minutes with them. Off sick at moment and struggling to imagine going to work again; I'm a lecturer so there is nowhere to hide if I have a seizure. GP said to try and not worry as meds might control it, so wait and see how treatment pans out as it's early days, and there's lots that can be tried between now and panicking!
I had a med question I posted in the kitchen, and I've been having a look around and found brilliant info and help here already. I'm still trying to get my head around this, and figure out how to go forward.

Last edited by Stray; 09-24-2018 at 09:40 AM.
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Old 09-24-2018, 03:25 PM
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Hi Stray,

Welcome to the forum! I'm sorry you have had to start dealing with partial seizures. I have had complex partial and absence seizures for 46 yrs. Two of the main things that will trigger seizures are lack of sleep and stress.
From what you are describing it sounds like some the seizure activity may be starting in the optical lobe which is the back of your head where your eyesight is. Often before I have a complex partial seizure I will start to see different colors in a zig zag pattern flashing back and forth in my eyes then I blank out. If you get any warning that you are going to have a seizure try to tighten up the muscles in your body and make your hands into tight fists by doing this you may be able to stop the seizure. My neurologist taught me this back in the 1970's and it has stopped many seizures. Cut back on the carbs and starch foods and start eating foods high in fat, this is known as the ketogenic diet. When a person builds ketones up in their body it helps stop the seizures and you burn fat off for energy.
I have a scar on the right temporal lobe that has triggered many seizures for me I had surgery done and they removed 75% of the scar tissue and that helped reduce my seizures also. Meningitis can sometimes cause brain damage and the reason I know this is because I have a cousin who got it and it effected his brain.
I think it's great that you do lecturers I work in a public school and I have found being open with the students and telling them about my epilepsy helps them understand and it doesn't bother them if they see me have a seizure. I wish you the best of luck and May God Bless You!

Sue
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Old 09-25-2018, 02:03 AM
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Thank you very much, I'm finding the forums to be a massive help. The medical system is great when you are in it, but once your sent home, it's pretty isolating, and that's when all the questions pop into my head. Definitely going to look into diet and will try tensing up if I get enough warning.
Thanks again for the warm welcome
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Old 09-25-2018, 07:17 AM
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Hi Stray, welcome to CWE!

I don't get clusters, but others here should be able to give you some advice. Keep asking questions -- getting informed (and knowing that you're not alone) can be a great way to cope with e.

Best,
Nak
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Old 09-25-2018, 11:01 AM
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Hi Stray, welcome to CWE.

I agree with Porkette that just being open with people about the possibility of a seizure while giving a lecture should mitigate any issues.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 09-25-2018, 11:06 AM
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Thanks folks! Your help is very much appreciated.
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Old 09-25-2018, 07:56 PM
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Hello & welcome. This truly is a great site. Porkette is right--it's good to be upfront about the possibility of a seizure.
. I've had simple partial seizures since childhood, but they weren't recognized as seizures until 1987. I suddenly had 3 or 4 tonic clonics, & during an EEG, I had one of those "feelings". That's when they were diagnosed as actually being seizures. A CT scan showed scar tissue in the back right side of my brain where I can feel a simple partial start--I was a forceps delivery. I also have complex partials now--those began about 18 years ago.
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Old 09-27-2018, 12:34 AM
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Greetings, a lot of what I read here is close to my life. This is a good location where you can find many who are in your same area
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