New to Forum....epigastric rising seizures

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Lynda

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For the longest time I kept getting these "weird" feelings that began with butterflies in my tummy and then rose up to my neck and/or head. It left me feeling very shaken and scared and worse....could not describe it properly to my doctor. They have been around for a couple of yrs and seem to occur every month or two. So he finally sent me for an MRI....negative....and an EEG..which showed some abnormality on the left side..He has put me on Valproic Acid...2 in the a.m. and 3 at bedtime...total of 1200mg. I searched and searched the legit medical websites and tried to describe it and came up with epigastric rising seizures....some others had experienced the exact same thing. After the episodes you are left with a condition called "de-realization" You feel as if you are not you and in a place that seems different or not fully familiar. I would love to connect with someone who also has this. It is very scary alone....and to those with other forms....best of luck and keep well. :)
 
Hi and welcome! What you describe is actually a fairly common sensation for those of us with epilepsy. It could be classified as a simple partial seizure. If a partial seizure precedes a generalized seizure it is known as an aura. If there is no generalized seizure afterwards it is just a partial seizure. I've put a link to a wikipedia article on seizure types. If you've already done some research you may know some of this already, but this is a very good description. It is kind of scary at first, and one of the feelings evoked by the seizure can be a sensation of fear, even if you are not actually afraid, if that makes sense. You may also smell things or hear things that are not there.
Anyhow, it's not unusual.

http://en.wikipedia.org/wiki/Seizure_types

Carry on!
 
Thanks Arnie...I appreciate your reply. I wish I knew what triggered them, how I even started them....will they ever "go away"....coz I don't think I can go on like this. One of the biggest problems with it IS...it leaves me with a feeling of something called "de-realization"...I do not feel like myself, my surroundings look and feel different....that is very very hard to accept.....I am really struggling with that part of it....:( :(
 
Hi Lynda, welcome to CWE, it's awesome here :)

As you've already seen, there are lots of people on here that can advise and support you.

Most of us never get an explanation for the cause (if not genetic or accidental/viral brain damage), and it can be difficult to find our triggers if they're not the common ones like stress/sleeplessness/illness/photo-sensitivity.

I understand the 'de-realization' effect- and like arnie said, that's a very common effect- I just call it 'trippy' tbh, but that's just an easier way for me to get my head round it.

I realise it's hard to deal with, but hopefully over time you'll actually learn to cope with it. It'll still be crazy and unpleasant of course, but you will get used to it at least and be able to deal with it.
 
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As slimblue says, you will learn to cope with it and probably just get used to it. I haven't had any seizures for just over three months now, and I think there's still some of that unreal feeling going on with me. Maybe it's a permanent part of me now, but it's ok. In a way I think it gives me some extra insight into stuff, if that makes sense. No one has ever found a cause for my seizures, and I want to assure you that there is almost certainly nothing that you are doing to cause it. It just is what it is, ya know?
 
Thank you both....I really appreciate it. I hope I do get used to it....another thing I do not understand is that it only happens every month or two. Have either of you had "full blown" seizures or just these scary non full seizures. I am really having a struggle with this. I am a young 71...lol....I love to be with people ...my kids always tease me about never growing up...and I love life...but this is hammering me...can't take it.
 
My 'usual' frequency for the big tonic-clonics that don't get triggered by anything is about 6 weeks now, in between those I'll have anything up to a few simple partials or auras and complexes a week. Those are mainly due to stress though- I can go ages without those if things are fine.

One thing that's a bit freaky, is that 'patterns' of seizures will develop, so say you start having clusters of simples over 3 days (like I did- after only ever having them as a quick aura before my tonic-clonic) your body gets used to that, and will repeat it. Same with whatever weird thing triggered it as well. :/

I know it must be hard, of course it is. Please don't struggle too much though- you've got CWE now ;)

I've learnt so much about E on here than anything from my doctors, and the support here is fantastic! Just reading about the struggles that others in similar situations have, and how they deal with it is an enormous benefit..

I'm a young 41. You can take it, Lynda :)
 
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I normally have about 7 complex partial seizures a month with a few simple partials in between them. I usually have one tonic clonic a year. It's been like this for I don't know how many years.

Some people can go years, months, weeks or days without having a seizure. Then there are people who can have one or several every day. Everyone is different.

When I start coming out of a seizure I'll be very confused about things. I won't know who people are, where I am, what I'm doing and things like that. It usually lasts around 5 minutes, some people's time length can be longer or shorter, then I'm back to normal (if you want to call me normal - lol).

You do get used to having epilepsy and everything that comes along with it as SlimBlue said.

I've also got more help and information on here than I do from drs. When you ask a dr something it's hard to describe what you are talking about and you get the answer in more of a medical term. But when you ask something on here there are a ton of people who know what you are talking about right away and you get the answer in normal words.

They don't know what caused my epilepsy, I started having seizures about 11 years ago when I was 27 (am I the youngest one on this thread?).

Two of my major triggers are stress and lack of sleep. Then there are those times out of the clear blue I'll have one. You can't say that since something is going on in your life is the only time that you're gong to have a seizure and not any other time.
 
Hi Lynda I think I know that feeling you're talking about. Just before I have a seizure I get the opposite I guess of dejavu, I feel as if I am out of my body and sort of just going through motions in slow motion. Nothing seems real and it's scary as hell. When I come out of a seizure not only do I not know anyone or anything for a little while but I can't hear, kind of like when you go to a concert and sit right uo against the speakers. I suffer from grand mal and nobody has never found a cause for them either, though stress, lack of sleep are my triggers also. But welcome here you'll find more answers and better support then the docs you see.
 
hi linda.

those rising stomach feelings are one of four main types of simple partial seizures... an 'autonomic.' Autonomic szs consist of strange or unpleasant sensations in the stomach, among other signs.
link below tells the main details you need to know about simple partials; if you have any questions p.m. me (aka the 'simple partial queen' as I've had epilepsy for 20 years incl. over 2,000 simple partials).
arnie has had many as well and nailed it re: the fear. been there done that so pls know you're not alone, ever again. I :agree: with slimblue "Please don't struggle too much though- you've got CWE now."

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
 
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