"building up" to a seizure?

[Loopy Lou]

Hey there, I've been wondering does anybody have signs that they may have a tonic clonic days in advance?

For the past few days I've been having loads of absences, twitches mostly down my right side and shooting headaches which only last a couple of seconds but make me wince and feel like I'm going to fall over. Add this to unsteadiness and sleepiness from my Tegretol and I'm not too great at the mo.

The last couple of times I had a tonic clonic I was feeling like this too, and I'm petrified I'm going to have one. I do get partials quite often but its been really bad over the last few days.

Does anyone else get something similar? Mind you, sometimes I can have a. Tpnic clonic with no warning signs whatsoeveg.

 

[Crash]

Funny you should bring that subject up Lou,same thing happend to me it was about two maybe two and a half days of feeling unwell before a had the actual tonic.

Stress caused it i know for a fact,i really had to concentrate on what people were saying,loss of memory,stuttering,twiches and a really slow gradual detachment from reallity.It felt like i was in a bubble or a dream kinda looking down on myself on the day of the seizure i was miles away mentaly.

I told my nuero she was quite suprised about the lenth of time it took to arrive shall we say.But thats only happend the once,i did have my diazapam prescription took all of them thinking if i could stop the stress then i could stop the seizure but to no avail.

I was pretty sore after that one spent a good while in bed.

I do hope you are ok Lou,maybe you should see your gp or nuero if you can get an emergency appointment,all the best Neil.

 

[Crash]

Sorry i should have said,i can get no warning as well,half a day all sorts really but above has been the longest.

 

[Loopy Lou]

I'm due to see him on Wednesday anyway for my 6 month appointment. With any luck I can get off the Tegretol. If anything its making things worse and side effects are so not worth it. I've been very stressed lately about my epilepsy, work and the neurologist appointment.

 

[Crash]

Thats good your getting to see him so soon,sorry about the Tegratol but if it aint working then it aint working he cant argue with that.

If you are stressed it gonna have an effect on your epilepsy it certainly does mine,i know a lot of people wont go on benzos but my diazapam is a saviour for me when it comes to my stress levels.

What other AEDs could you try if you dont mind me asking?

 

[Loopy Lou]

Well currently I'm on 3000mg Keppra which I seem to be tolerating well and 600mg Tegretol which I'm not. I've also tried lamictal which made seizures worse and me dizzy and my hair fall out, and Vimpat which did help slightly but also made me a suicidal insomniac.

I seem to be having real problems controlling partials and the neuro said last time that theres a good chance that they'll never be completely under control. I don't want him to give up on me and I'm getting really frustrated.

I'm having less tonic clonic than before, sometimes I'll not have one for months and then sometimes I can have 2 or 3 in the same week.

It doesn't make any sense...

 

[Crash]

Your certainly right about epilepsy making no sense Lou,at least your Tonics are down over all,yes? Thats a bonus.Do you think you could see your epilepsy nurse? I find mine better to talk to than my nuero.

There are still other aeds routes you could go down,so its a bit of a deafeted attitude your nuero seems to have,im not really clued up on meds apart from Tegratol,Epilim,im on them at the moment and Epenutin years ago.

Its could the Keppra seems to be working though and surley they have some more ideas up their sleeves.Try not to get to stressed Lou please.

 

[Nakamova]

Lou --

For the majority of my tonic-clonics there hasn't been any warning, but there have been a few where about a week beforehand I've felt like I'm on the edge of losing my ability to stay "present". It's not that I'm distracted, it's more like how it feels if you're very, very tired and trying to stay awake in class and just on the verge of dropping off to sleep but not wanting to...

 

[Loopy Lou]

Yes, that's the kind of feeling I get Nakamova, like I'm not fully there. It's like I'm[HULU][/HULU] in zombieland with a bit of twitchyness and falling over for good measure. mind you, I generally fall over a lot anyway lol.

 

[elizzza811]

Never had a tonic clonic as far as I know, but I have noticed an increase in symptoms days before my generalized partials (complex partials). Definitely an increase in what I'll call 'agitation', teeth clenching, and sweating...and then an eventual seizure that seems to resolve these symptoms, at least temporarily. I've always wondered if these symptoms are what is meant by an 'aura'?

I noticed though that this recent onset of symptoms for a couple of you coincides with some unusual solar/geomagnetic events in recent days.

This solar magnetic filament appeared Saturday morning (possibly as early as Friday night) and it remains...

http://spaceweather.com/archive.php?view=1&day=12&month=11&year=2011

And a couple of days ago some other geomagnetic events were underway too, specifically a geomagnetic sudden impulse, a K-4 geomagnetic storm, and an A>20 event, though I've never been sure of what exactly that last one means...

http://www.swpc.noaa.gov/alerts/alerts_timeline.html

http://www.swpc.noaa.gov/alerts/archive.html#2006

Keep in mind that all of these are in 'universal time', so you may have to estimate/convert to your own time zone. In other words, an event which appears to start on a Saturday morning may actually have begun late on Friday.

 

[Loopy Lou]

I'm not feeling as bad today, just really sleepy. A couple of partials but nowhere near as bad as it has been. Could this have just been a bad weekend? I slept from about midnight last night all the way up til about mid day.

Dying to get an early night again but have arranged to go out. It's annoying that my own brain puzzles me so much. I'm glad this site is here.

 

[Brent]

Hey there, I've been wondering does anybody have signs that they may have a tonic clonic days in advance?

Yes, frequently, but not always. I've come to understand that I typically start building up to a seizure some time in advance, but it happens so gradually that I am normally unaware. However, my seizure alert dog can tell. She starts to act restless and clingy.

This too comes on gradually. I don't usually notice the change in her behaviour until, at earliest, the day before a seizure. Often, once I notice the change in her behaviour, then I can reflect back and realize that she had been gradually building up to this for a day or two prior.

Once the change in her behaviour is clear, often I can then reflect on my own state of mind and sensations and notice subtle changes. Since it comes on so slowly, if it is not pointed out to me, I won't notice these on my own. Family members can also point out changes right before a seizure that I would otherwise not notice, but they are far less sensitive to these than my dog.

The morning of a day when I'm going to have a generalized SZ, I can almost always tell. My dog will be anxious and very clingy. She normally keeps her eye on me (it's her job), but on the day I will have a SZ, she doesn't blink. If I don't pay attention to her, she will frequently check in with me and force me to make eye contact. There is no doubt that she knows it is coming. Sometimes my thinking becomes clouded so that I don't notice or pay attention to these obvious signs, but friends and family can readily see it and point it out if I don't pay attention.

So, clearly, there are physiological and/or behavioural changes well in advance of a SZ. It is therefore not surprising that some people are able to notice them.

What's more, these changes seem to become different or more pronounced as the SZ grows closer. Often, about an hour before the SZ, my dog is very loath to go out, enter stores (which tend to contain triggers) approach stairs, etc. She stays VERY close, and prefers to be in physical contact with me.

About 5 minutes before the SZ, she becomes very anxious, maybe even shaking, and becomes very assertive about not letting me near danger. Immediately before, (less than 30 seconds or so), she absolutely will not let me get up. If I am standing, she'll pull at my wrist until I sit down. She tries frantically to get my attention until I'm sitting or laying on the floor.