My First tonic-clonic seizure…


This is sad.  Well, I am sad. It makes me sad.  I was really hoping this would not happen but I guess it did.  The possibility of it was always there but…? *sigh*

On the heels of the (nocturnal) seizure that I don’t know if I had or not…then it subsequently making me post-“ick”tal© for 48 hours…

Tonight (or yesterday) I felt better.  I went to J.’s for dinner and while we were waiting for my bus, we sat at a patio and then, well bugger me, all PA HELL broke loose! I’m still trying to piece it together with J. but he’s exhausted because they ignored me (us) for what…?…six or seven hours in the ER? No, a bandaged finger got quicker attention that a goddamn seizure and possible head injury at this one place!

I’m still at J.’s, as I can’t go home.  God only knows what on earth’s shape I’ll be in tomorrow? Thankfully, I had my overnight stash of meds here.  I still don’t know how I’ll sleep as I am so upset and the couch? I might even just crawl into bed with J.!

So, what happened? Apparently, I just went down like a tonne of bricks! I was seizing like crazy, J. was trying to hold my head but I bonked it well and good on the pavement.  It fucking hurts.  I sure hope I don’t end up with another concussion but I’ll look for that when I wake up.

I asked him how long it lasted.  He said maybe about five minutes between when it started and the first EMS arrival.  That would have been the Firemen.  I don’t remember them.  Then the Paramedics came.  I do remember them.  Well, I do remember the Firemen, but only one of them putting an oxygen mask on me…or asking and I said okay.  I seemed to have come around enough to talk to the Paramedics.  Who were also lovely and gave a full tank of oxygen!

But in between? It’s odd because I heard J.’s voice, another man’s voice, the woman who worked there but that is it.  To me, I don’t think that constitutes five minutes.  I think what I may have heard, in all they were saying, was when I first went down and then lost consciousness.

I heard J. saying I was okay and that I have seizures, the man telling me not to worry and then the woman asking if we wanted EMS called.  J. then told me it was after that EMS showed up.  So that makes sense.  I heard all of that as I was just starting to go?

I’m not sure as I’ve never had a tonic-clonic before.  Still, it fits with the time line if I was still seizing and recalled nothing until any Emergency Response.

Yes.

So, there you go.  Or, there I go. *sighs again* I called as soon as we got back to cancel Merlin #2 tomorrow.  No way I can make that appt.!

Wow.  I still can’t think or even believe it even happened!

Stupid Epilepsy. A tonic-clonic?

Oh, and I totally lost my legs and fell to the floor trying to get up from the wheelchair at the hospital, too! Over several hours, I could walk again when we finally left, PA AMA! My legs are still a bit shaky and it’s been hours now.  Oh, dear god will I be in post-“ick”tal© torture tomorrow (today?)

I just want to curl up and disappear.

What a nightmare.

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  1. Lili

    I am so so sorry that it happened. Hopefully when you’re able to move properly and get to the neuro he can tell you what’s going on. Especially if you’re not sure if you’ve had a tonic-clonic before.

    Be well~

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  2. Hi Lili. Thanks. Well, I know I’ve never had a tonic-clonic. That’s for sure. An Atonic where you just go limp and lose consiousness but then you regain it mere seconds later. They are so brief. A tonic-clonic involves exactly that–the rhythmic jerks and spasms of both the tonic and clonic.

    I spoke to J. after getting up. I’ve only had a few hours sleep. He agrees with my timing issue of it all, even though because it happened so fast, he couldn’t quite accurately time it. Still, his estimation is better than nothing.

    Due to that fact, with that everything went on, several minutes, me just dropping to the ground and seizing like hell, him having to hold my head as it was banging to the ground, me losing the time and the consiousness. It’s a tonic-clonic.

    I can and will relay these events with my Neuro, absolutely! Even if I just send him a letter! We both agreed that Epilepsy is Epilepsy! And we were just going to wait for the VEEG, anyway? So, send him the info and see if an appt. is necessary? Call for appt. and see how long it would take?

    I don’t know. Head not right today…quite happily post-ictal *PA sighs again*

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  3. Lili

    Rest,rest,rest. Because I know little of epilepsy I didn’t know if this being your fist tonic-clonic was symbolic of something new. I hope your doc can shed some light on why the event happened.

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  4. arifaery

    oh pa i’m so sorry. That is so scary, and probably frustrating. I agree with Lili, plenty of rest. and maybe your neuro can help. Do take care.

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  5. Hi Lili and arifaery. Yes, I am trying to rest as much as I can. Well, I have no choice in the matter. My body isn’t letting do much more than that.

    Indeed, perhaps Non-Arsey Neuro may have some clue but I don’t know.

    As far as it being something “symbolic” Lili, I don’t know what that could mean. In that document I gave him, I listed several “possibles” as to why my brain might be doing all of this business, and we did discuss several, but everything is completely “inconclusive.” Perhaps, even more so because of my own stupid brain and all of my comorbidities! Also, I’ve had seizures since I was a kid.

    If you want to, Lili, I can tell you oodles about them or whatever you’d like to know!

    Thanks so much for your support, guys.

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  6. Lili

    No worries about explaining it to me just yet. My brain is reaching for the off switch as we speak…

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  7. Not a problem, Lili. We can wait until later. My brain is pretty darn close to the “off switch” so I’m going to move along to a post now…

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  8. Natasha

    Tuesday morning at 7.30 i woke up for work, was really tired as the night before i barely slept. So im in the kitchen straightening my hair, getting ready for work. Anyway this is what im told happend to me…. I fell to the floor jerking and my muscles shaking, I fell uncoincious for at least 20 minutes. When i came around and woke up i didnt recognise my gran who i live with, She was helping me remain comfortable with cusions, I was terrified of her i said to her “Get off me” who are you? I had totally lost my memory for an hour or so, I also was bleeding from my tongue! I bit it during the seizure! Im 21 year old woman, this is the 2nd time this has happened to me in the past 4 months!!! Is it Tonic clonic???? Please help! Natasha. x x x x

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  9. Hi Natasha. Nice to meet you, and welcome to my blog. As I always state, I am not a M.D., so I am not qualified to diagnose you, or anyone else. However, what you describe does sound to me like a tonic-clonic seizure. This is why (and again, bear in mind I am not a M.D.) I am only stating this from what I know, and what I have experienced–that is somewhat similar.

    Yes, you do become completely unconscious when you have a tonic-clonic seizure. Also, you have no control over your muscles, and they do go into varying degrees of muscle contractions. It is not uncommon for people to bite their tongues, as well.

    When you woke up confused, you were in something called a post-ictal state. That simply means “after a seizure.” It is also not uncommon for people to be very confused (after a tonic-clonic, or other types of seizures.) You can also be in different types of emotional states. So, your feelings of fear were not “abnormal,” either.

    The loss of your memory is something called “post-ictal amnesia.” This can definitely happen, as well! Plus, it can also happen with other seizures, apart from tonic-clonics.

    If this will assuage any of your concerns (as to me you sound rather concerned about this), I will tell you a bit of what I have experienced, based upon what you have written, above. Maybe it will help?

    I have been unconscious for all of my Complex Partial Seizures. I have had several of them. I have had varying loss of consciousness (well, altered), with my Simple Partials. With my Atonics, I lose consciousness, but only for a few seconds. Atonics are brief, but you do lose consciousness, and all muscle tone. If I am standing, I will drop to the floor. I also will if I am sitting, and not supported properly.

    I have become confused when I do retain consciousness, sometimes. I have also been in odd emotional states. I have also had post-ictal amnesia. Unfortunately, sometimes that amnesia has remained permanent (or at least some of it.) I do not remember parts of what happened after certain seizures I have had. However, not all of them.

    Although, I want you to note this, as it is very important. Everyone who has seizures, or who has epilepsy, is different. Even every seizure is different! So, I don’t want you to base your feelings, or concerns, upon my own experiences, okay?

    I think it is fantastic that your gran took such good care of you! She obviously knows about seizure protocol! Definitely one of the most important things! Do not put anything in the person’s mouth! They may bite on it, and then start choking! Also, just protect their heads! Don’t try and hold them down, as then they may risk injury themselves.

    Now, since this has happened before, have you seen a doctor about it? If not, do so immediately!!! You absolutely must! Again, this sounds like a tonic-clonic, to me. If you have a GP, or a Family Practitioner, start there. You will then probably need a referral to a Neurologist. In my opinion, this should definitely be checked into, if you haven’t done so already.

    I know it may be difficult, and scary. But also know that there are so many of us out here that do have epilepsy, if you do receive that as a diagnosis. I have it, and I still move along with my life. There are lots of medications out there, that do a good job in keeping it in check, too.

    Take care, and come back if you need anything else, okay?
    PA

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