Partial and nocturnal seizures

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Pheonix

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Hi everyone :) I've never done anything like this before so am not too sure on what to say lol. I am 16 years old and have recently been diagnosed with epilepsy, have an appointment too see a neurologist coming up :/ i first went too the doctors suffering from severe headaches - was sent for an MRI which came back as slightly abnormal but they decided it was fine :)

I kept getting this strange feeling, started off with a funny feeling in my tummy, then a tingling in my head, then everything looked strange (like flat? and darker weird i know :L) this feeling would either fade or i would end up going blank and just forgetting. I didn't tell anyone about this because i thought if i just ignored it that it would go away.

After this going on for a few months and gradually getting worse teachers started too notice and called my mum in, after a meeting they decided that i should go back to the doctors, they wrote a letter explaining what i was like (completely blank, unable to understand simple instructions, staring, looking like i was tasting something? (not too sure what they ment on that one lol) they said that it would last a couple on minutes before i started too get better but still took about an hour if i didn't fall asleep to be completely normal.

After going to the doctors they decided that i was probably suffering from partial and nocturnal seizures (asked me about my sleeping pattern and how i feel when i wake up) sorry it's so long winded :/
 
Welcome Phoenix,

I'm sorry you're having to go through this, especially at school. But at least teachers noticed and did something good, instead of reprimanding you for not paying attention. It does sound like you're suffering from complex partial seizures. Those last for several minutes and a person stares into space, unable to understand when spoken to, unable to speak, and smacking of the lips, as though tasting something. The post-ictal period (after the seizure) often lasts 30 mins. or more, depending on the severity of the seizure. Once you see the neurologist, you can discuss this with the dr.
 
I've just started looking it up, I didn't realise that there were different types :\ that's why when they told me I was so confused and didn't really know what too say, I haven't yet told anyone obviously my mum knows but that's it, for some reason I can't seem too say it, sounds weird but it just doesn't come out :L i think tgere will be another meeting soon but not sure, Thanks for making it a little clearer, the doctor did say a bit but I've completely forgotten what he said lol
 
Hi Pheonix, welcome to CWE!

As you're discovering, epilepsy is complicated, and it can take awhile to get a handle on what's it means as a diagnosis. Cint's right -- what you describe sounds like simple partial/complex partial seizures. Simple partials feature odd sensations or impressions -- like tingling or nausea -- but don't involve any loss of consciousness. Complex partials involve impaired awareness, and can feature automatic behaviors like lips-smacking or picking at clothing. You can read more about the different seizure types here: http://epilepsyhaltonpeel.org/index.php/about-epilepsy/epilepsy-seizure-types/

The next step is treatment -- usually with medication. It's important to get the symptoms under a control, so your brain doesn't get "used to" them happening. Let us know how it goes, and feel free to ask any questions about any meds you're prescribed.

BTW, I know epilepsy can be a loaded term, and a confusing one, since most people associate it with convulsions and loss of consciousness. If it makes it easier, you can tell folks that you have a "seizure disorder", and give them a little basic info about what complex partials are.

Best,
Nakamova
 
Hello and Welcome! (Too bad you have to be welcomed because you have siezures, but welcome anyway! You know what I mean.)
This is a good place to talk to people, get your questions answered, and get comfortable with the whole epilepsy idea. As Nakamova said there are a lot of weird ideas about epilepsy and "epileptics", so the more comfortable you are with it the less freaked out other people will be.
Epilepsy can be different for different people, but on the whole you should be able to do pretty much anything you want, except probably be a pilot or a bus driver! (You may not be able to get certified to scuba dive, either.) I've had it for much of my life, and have been on meds for about 30 years. I still have two or three hundred complex partial seizures a year, (they kind of come in groups) but they don't interfere too much with things. I don't think I have ever had to miss work because of them, and I also am a pretty active person.
SO, welcome again! Learn as much as you can about the meds you may need to take and be a really active participant in your care. If you don't like the side-effects of a certain med, be sure to tell your doc. I have been on several meds where the side-effects were worse than the seizures.
Keep us posted!
 
Thanks the link was really helpful and i guess i will just have too see what happens :/ guess it's good too know what it is and that im not losing the plot lol but just sounds weird i don't really want the school too know either, not too ure if i have a say :L
 
The school probably should know, I would think. For one, they will understand if you do the blanking-out, lip-smacking stuff and will not think you're on drugs or need a doctor right away or something. Also, since there's a chance that you will be having some sort of sz stuff for a long time, it will help you to be able to come to terms with it, be natural about it, know how to talk to others about it, and then live with it and get on with your life. I think that's what a lot of us are able to do. You'll be fine, really. Even if you keep having szs, you will be fine as a person! Let us know how things go. If you need help knowing what to say to people, or if you have specific issues, i'm sure lots of us will be happy to help you out.
 
Thanks arnie i think that they will probably end up finding out anyway its just that i can't seem to be able to say it :L sounds ridiculous i know lol
 
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