Anyone get weird feelings leading up to tonic-clonic seizures?

[CrunchyFrog]

Just a question, I had a small seizure when I woke up yesterday. But for the past few days I've been having at least 2 or 3 semi seizures, I feel like I'm about to have a seizure get the intense feelings of butterflies in my stomach which seems to be triggered by a particular scene or event. I'm not sure if I'm stopping myself from actually having a seizure because I'm aware of it, but it's a really strange feeling. Other times I'll feel weird like I'm disconnected from my body and everything just feels different or wrong. This is relativley new I've eperienced these before but, not so many times in such a short period. Just wondering if anyone has experienced this and if it was maybe a warning that a large seizure was coming??onder:

What I found particularly bizarre is that I had one of my semi seizures while watching an episode of Big Bang Theory, I recently bought season 5 on DVD. What was weird is that I had the experience at the exact same moment in the exact same episode that I had one months ago when it was on TV??? I feel like I'm becoming a total fruit cake Maybe just a coincidence.

 

[PFunk]

One of my auras is depersonalization. I feel like I'm watching myself (sometimes it seems like I'm 1 or 2 seconds behind). It's a pain in the @ss if I'm having a conversation. It is hard to concentrate when your watching yourself trying to talk . Butterfies in the stomach is also a common aura. I get all different types, a real smorgasbord.

I always have auras (simple partials) before I have a tonic clonic. Most of the time I just have simple partials. On occasion they may metastasizes into a TC. Sometimes if I concentrate really hard, I can stop the seizure (its not easy...)

 

[summerf]

I related to a lot of what you both wrote, Crunchy Frog and P-Funk. I started having this weird feeling at the same stoplight on the way home. It was a feeling of dread/fear, and I had "I'm going to have a seizure" going through my head. I felt like if I didn't try really really hard NOT to have one, and if I just relaxed a tiny bit, I'd have a tonic clonic. And because I couldn't figure out how the heck to describe that to anyone without sounding completely insane, I didn't tell anyone for a while. It happened like that off and on for a couple of months, and I finally told my husband. I told him I guessed that I shouldn't be worried about it, because a tonic clonic had never actually followed the bad feeling. And then, guess what? 3 weeks ago, I had the bad feeling (not at the stoplight, but while I was at home getting ready for work), and I DID have a tonic clonic about a minute later. Now I'm much more wary of the bad/weird feeling. I haven't driven since that time.

I wasn't convinced before the tonic-clonic that what I was experiencing was a simple partial or an aura. I thought I was insane. Or scared to death of having another tonic-clonic. Or both. In any event, I have a neuro appointment on Tuesday, and I'm going to try to explain this the best I can. I'm still not sure I can explain it very well.

I have JME and I've been resistant to taking meds because I don't have the tonic clonics very often as long as I avoid the usual triggers - sleep deprivation and alcohol. I took lamictal for a while but it ended up giving me hives, and I never took anything after that. I've started journaling all the weird stuff, though, and I really think I need to be on meds. I've probably been just playing with fire all this time by not wanting to take them. Ugh.

In any event - Crunchy Frog, do you think your weird/bad feeling is a simple partial or an aura?

 

[m1987]

I related to a lot of what you both wrote, Crunchy Frog and P-Funk. I started having this weird feeling at the same stoplight on the way home. It was a feeling of dread/fear, and I had "I'm going to have a seizure" going through my head. I felt like if I didn't try really really hard NOT to have one, and if I just relaxed a tiny bit, I'd have a tonic clonic. And because I couldn't figure out how the heck to describe that to anyone without sounding completely insane, I didn't tell anyone for a while. It happened like that off and on for a couple of months, and I finally told my husband. I told him I guessed that I shouldn't be worried about it, because a tonic clonic had never actually followed the bad feeling. And then, guess what? 3 weeks ago, I had the bad feeling (not at the stoplight, but while I was at home getting ready for work), and I DID have a tonic clonic about a minute later. Now I'm much more wary of the bad/weird feeling. I haven't driven since that time.

I wasn't convinced before the tonic-clonic that what I was experiencing was a simple partial or an aura. I thought I was insane. Or scared to death of having another tonic-clonic. Or both. In any event, I have a neuro appointment on Tuesday, and I'm going to try to explain this the best I can. I'm still not sure I can explain it very well.

I have JME and I've been resistant to taking meds because I don't have the tonic clonics very often as long as I avoid the usual triggers - sleep deprivation and alcohol. I took lamictal for a while but it ended up giving me hives, and I never took anything after that. I've started journaling all the weird stuff, though, and I really think I need to be on meds. I've probably been just playing with fire all this time by not wanting to take them. Ugh.

In any event - Crunchy Frog, do you think your weird/bad feeling is a simple partial or an aura?

You sound like a 1 year further down the line version of me! I haven't been diagnosed with anything yet, but if I had to guess, I'd say JME. I have the bad feeling before a seizure. It's usually terror for me, which gets the heart rate up and speeds up the breathing. As you say, sometimes if I focus really hard, I can stop it, but since they happen just after waking up, it's very hard to do.

I'll probably give in and go on meds soon. How would you feel about keeping each other up to date on weird goings on as it sounds like we could maybe gain some benefit from shared experiences?

 

[summerf]

I'd like that, M1987!

 

[qtowngirl]

Just wondering if anyone has experienced this and if it was maybe a warning that a large seizure was coming??onder:

What was weird is that I had the experience at the exact same moment in the exact same episode that I had one months ago when it was on TV??? I feel like I'm becoming a total fruit cake Maybe just a coincidence.

Good morning; I copied one of my posts from another recent thread regarding auras...

Simple Partial Seizures
Simple partial seizures are localized to one area on one side of the brain, but may spread from there. Consciousness is not lost during a simple partial seizure. The left side of the brain controls the right side of the body, and the right side of the brain controls the left side – so it can be relatively easy for a doctor to identify which side of the brain is being affected by a simple partial seizure.

Physicians typically break simple partial seizures down into four areas, depending on the location in the brain and parts of the body affected:

Motor – A simple partial seizure with motor symptoms will affect muscle activity, causing jerking movements of the foot, face, arm, or another part of the body. Physicians can diagnose which side of the brain is affected by observing which side of the body experiences symptoms (left brain controls right side, right brain controls left side).

Sensory – A simple partial seizure with sensory symptoms affect the senses: hearing problems, possible hallucinations, and other distortions.

Autonomic – A simple partial seizure with autonomic symptoms affects the part of the brain responsible for involuntary functions: it may cause changes in blood pressure, heart rhythm, bowel function, etc. (as well as fluttering/butterfly sensations in the abdomen).

Psychic – A simple partial seizure with psychic symptoms affects parts of the brain that trigger emotions or previous experiences: it may cause feelings of fear, anxiety, déjà vu (the feeling that something has been experienced before), etc.

It sounds just like a simple partial. I have had s.p's for many years and have some of the same symptoms (tummy flutters and MASSIVE deja vu). Yes it can be a warning of a larger seizure coming, and tho it doesn't always go that route, it's best to take it serious and get yourself to a safe place such as a couch or bed and DEFINATELY pull over if you're driving (trust me on that one). This is why they're also referred to as auras, tho they actually are a seizure, they serve as a warning that more may be on the way.

For more info from a very reliable hospital site said to be #1 in the US in Epilepsy: www.hopkinsmedicine.org/epilepsy

 

[MuayThaiFighter]

After being on this forum more, getting more info from the articles I realized my warning auras before a bigger seizure is a simple partial. Though, I have went right into a T/C before without the usual warnings. I know I felt no emotion, felt blank, couldn't really talk.

 

[jayde-101]

I learnt last night that before i go into a tonic-clonic seizure i normally start clustering with partials ....its kinda hard to tell if Im going to have one thou....

I also Dont quite feel myself :/ And time seems to start lapsing

 

[RunningGirl85]

After being on this forum more, getting more info from the articles I realized my warning auras before a bigger seizure is a simple partial. Though, I have went right into a T/C before without the usual warnings. I know I felt no emotion, felt blank, couldn't really talk.

Same here. Which is why my long partials scare me. It's the whole secondary generalization thing... I also get the clusters of deja vu in the days leading up my long partials / occasional TC. I've never had a TC without warning, but I've only had a couple

Sent from my Vortex using Tapatalk 2

 

[CrunchyFrog]

Thanks everyone for replying, it's actually comforting to know I haven't just lost the plot.

Sounds like they must be simple partials, it's annoying because until I started experiencing these, most of my seizure activity happened in my sleep. I don't know what that means, in terms of whether it's getting worse or if there are other factors contributing to it

They've stopped now and I haven't had a tonic-clonic so thats at least something....

 

[Sasa]

Reply to "qtowngirl"

IN REPLY TO THIS POST:
Simple Partial Seizures
Simple partial seizures are localized to one area on one side of the brain, but may spread from there. Consciousness is not lost during a simple partial seizure. The left side of the brain controls the right side of the body, and the right side of the brain controls the left side – so it can be relatively easy for a doctor to identify which side of the brain is being affected by a simple partial seizure.

Physicians typically break simple partial seizures down into four areas, depending on the location in the brain and parts of the body affected:

Motor – A simple partial seizure with motor symptoms will affect muscle activity, causing jerking movements of the foot, face, arm, or another part of the body. Physicians can diagnose which side of the brain is affected by observing which side of the body experiences symptoms (left brain controls right side, right brain controls left side).

Sensory – A simple partial seizure with sensory symptoms affect the senses: hearing problems, possible hallucinations, and other distortions.

Autonomic – A simple partial seizure with autonomic symptoms affects the part of the brain responsible for involuntary functions: it may cause changes in blood pressure, heart rhythm, bowel function, etc. (as well as fluttering/butterfly sensations in the abdomen).

Psychic – A simple partial seizure with psychic symptoms affects parts of the brain that trigger emotions or previous experiences: it may cause feelings of fear, anxiety, déjà vu (the feeling that something has been experienced before), etc.



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Soo....I definately fit into the last two, (Autonomic & psychic), as far as the feelings i get.....but the thing is....I haven't actually HAD a mild epileptic seizure since I was on meds in late 1998. I got off the meds in 2001 because my doctor said I had grown out of them...and I was fine for 7 ish years until I went to a rave in 2008, took ecstasy and had a grand mall. and then ever since then I have been having those pre-mild epileptic seizure feelings that i used to get when i was younger...they vary on how bad they are...most of the time im able to some-what ignore it...but sometimes they are so bad that I have to do something to create an adrenaline rush to get rid of the feeling...for example, run really fast, create pain, create dramatic temperature changes (rub ice on my skin) etc.
I have had one grand mall seizure since 2008, and that was due to low calcium and i was diagnosed with Pseudohypoparathyroidism. my calcium levels are beyond perfect now, so im not having anymore seizures due to that. But I was thinking for awhile that that pre-seizure feelings were a warning of low calcium, but they are two very different things. because the seizures due to low calcium are grand malls, i dont feel them coming on.
Ive come to the conclusion then that these feelings of a mild epileptic seizure coming on, and my pseudohypoparathyroidism, are not related.
I do not want to go back to being scared shitless that Im going to have a seizure all the time. I hate that feeling, and I want it to go away!! what should I do!?!??! someone please help me.
another thing...I have had terrible anxiety all my life...I am an anxious wreck haha...so I have also had the thought that maybe these feelings are stress/anxiety related? is that even a possiblility? that its not an actual seizure but just anxiety?

Finally, I would like to ask, for people who have these pre-seizure feelings but dont actually end up ever having on....HOW DO YOU COPE?! Im going insane here...i just want it to stop terrorizing me.

 

[LadyLee80]

Oh, wow! I really thought I was going crazy, and reading that others experience what I do is soothing. I will have the strange feelings when I see movies that were on during a seizure I had, smells, music, you name it. The sky gets to me, as I have come out of a seizure staring up at the sky many times. I can't tell you exactly how to cope, but I can tell you that you can fight it. I "over rule" myself, and tell my brain that I am not in the mood for a seizure. Good luck, and contact me anytime to talk if you need a friend.

 

[AndrewIrish]

Is this an aura?

I have felt shaky after a poor nights sleep and my myoclonuc jerks are so bad right now I can't even hold a conversation without sputtering all over the place and I feel dizzy and jittery and am having to lie down to calm myself - what is going on?