Epilepsy Question

[DAVE1967]

Anyone With Epilepsy This Question Goes To You & You Only .

Before You Have A Siezure Do You Know Before It Hapens To Let Someone Know About It? Or Are Your Siezures Too Far Advanced Of You That You Can't Tell Anyone Cause It Already Happened? ( Pitetemals To Medium ones ONLY Not GRANDMALS) I'm Needing To Know For I'm In The Bracket Of Pitete To Medium Ones & Was Thinking Of Getting Something . But I want info before I do this . Thank You - DAVE

 

[BIGMAN131307]

What are you thinking of getting?



As for your main question, I've experienced both since I've been Epileptic. When I was 5yrs to about 18yrs I'd would get an aura before my seizures. But now I don't get anything they just happen.

 

[Birdbomb]

I can feel mine coming on. It's like a wave that just envelopes me and I often retreat to a safe place, chair, bed and can often warn others until it passes. Even the grand mal has a precursor. But alas..(sigh)...My VNS took those auras. My VNS is off and explanted, now decorating my desk as a paperweight and now I've been seizure free over 3 years however I have has that "feeling" of an impending sz a few times.

 

[Nancy]

When I started having complex partials I ALWAYS knew one was starting. I had maybe 30 -60 seconds. I could NOT speak but I could move, make calm decisions.

Then (not anymore) I was a heavy smoker and used big power tools. That wonderful aura told me to put out the cigarette, turn off the power tool, step back or sit down, get safe and wait it out.

There was one bad (lost a word here) time that aura failed me and I burned myself horribly with a professional woodburner I was using. *whew*.

Later the addition of newer meds or something ruined that much loved aura and my seizures turned into sudden "black-outs" . Oh, how I hated that .... misery.....scary misery.

 

[Bee91]

Sometimes I have auras. Sometimes I don't. Usually I do. But I have a hard time telling people that I am having an aura so it's pretty much useless...

Other times I will just stare off without any warning. It really just depends on what type of seizure I am having...

 

[morgan381]

I get a panicky feeling...like dread just before the partials begin. I am able to speak and to think rationally when they first begin. It's sort of like a "brain fart" and my thoughts go blank for just a second. So far, I've always been able to tell someone when they're about to start. My family is also really keen on noticing the small ones. I've called my mom when the small ones start, and she can tell by my voice; my speech is slurred and my voice sounds like I've just woke up.
What are you thinking of getting?

 

[Crazy Monkey]

I get no warning my Petit Mal seizures just happen, I can be half way through a conversation, eating my dinner, crossing a road, holding a hot mug of coffee etc, I have actually just felt myself have one whilst I was sitting here typing this message, amazing - proves my point.

 

[wowthissuxass]

I am confused with the up and down roller coaster ride I am on. I was just diagnosed 1 month ago, was started on dilantin, and have since been switched to keppra by my nuro. I go from feeling great, to super grumpy (usually resulting in me snapping at someone), to super tired with a headache, to happy again all with an hour and a half or so.

The only thing I am able to forecast now are the tremor/shockwave partials I have. It almost feels like the feeling you get when you get a cold chill, but more extreme. I cant explain it but I get a certain feeling just before the first, and then have 3 or 4 over the next few minutes. Its like my eyes close, seems like my shoulders shrug and a chill goes all the way down my body. Does anyone else have anything like this? My nuro says its is "seizure activity".

Also my emotions have been crazy, I was watching a football story about a paralyzed kid yesterday and started sobbing, not like me to say the least!!

I am wondering if its the meds, or some sort of post or pre ictal issue.

 

[morgan381]

I am confused with the up and down roller coaster ride I am on. I was just diagnosed 1 month ago, was started on dilantin, and have since been switched to keppra by my nuro. I go from feeling great, to super grumpy (usually resulting in me snapping at someone), to super tired with a headache, to happy again all with an hour and a half or so.
...
Also my emotions have been crazy, I was watching a football story about a paralyzed kid yesterday and started sobbing, not like me to say the least!!

I am wondering if its the meds, or some sort of post or pre ictal issue.

I take Keppra, and the emotional things you described sound a lot like the side effects I had when I began taking it. The headache and moodiness lessened after about 10 weeks and the headache and grouchyness was completely gone by month 6. (An incredibly long time to have a headache & to be a b****! but my doc at the time kept telling me they'd go away and I just needed to stick it out--I don't see that one any more) Now, I get a headache when I miss a dose. Whenever I've been particularly irritable, my hubby always asks me if I remembered my meds (I also get irritable before an attack) I can't say about the crying at movies stuff...I've always done that

 

[DAVE1967]

What are you thinking of getting?



As for your main question, I've experienced both since I've been Epileptic. When I was 5yrs to about 18yrs I'd would get an aura before my seizures. But now I don't get anything they just happen.

I was thinking about getting that device that the elderly people use when they live alone ( HELP I'VE FALLEN & I CAN'T GET UP ) That thing . Any Idea? Yes or No?
DAVE

 

[DAVE1967]

I get a panicky feeling...like dread just before the partials begin. I am able to speak and to think rationally when they first begin. It's sort of like a "brain fart" and my thoughts go blank for just a second. So far, I've always been able to tell someone when they're about to start. My family is also really keen on noticing the small ones. I've called my mom when the small ones start, and she can tell by my voice; my speech is slurred and my voice sounds like I've just woke up.
What are you thinking of getting?

I was thinking about getting that device that the elderly people use when they live alone ( HELP I'VE FALLEN & I CAN'T GET UP ) That thing . Any Idea? Yes or No?
DAVE

 

[DAVE1967]

I am confused with the up and down roller coaster ride I am on. I was just diagnosed 1 month ago, was started on dilantin, and have since been switched to keppra by my nuro. I go from feeling great, to super grumpy (usually resulting in me snapping at someone), to super tired with a headache, to happy again all with an hour and a half or so.

The only thing I am able to forecast now are the tremor/shockwave partials I have. It almost feels like the feeling you get when you get a cold chill, but more extreme. I cant explain it but I get a certain feeling just before the first, and then have 3 or 4 over the next few minutes. Its like my eyes close, seems like my shoulders shrug and a chill goes all the way down my body. Does anyone else have anything like this? My nuro says its is "seizure activity".

Also my emotions have been crazy, I was watching a football story about a paralyzed kid yesterday and started sobbing, not like me to say the least!!

I am wondering if its the meds, or some sort of post or pre ictal issue.

DEPAKOTE 500MG 2 CAPSULES 3X DAILY

KEPPERA 500MG 2 TABLETS 3X DAILY

DILANTIAN 100MG 5 CAPSULES 2 IN AM 3 IN PM

GABITRIL 16MG 1 IN AM & 4MG 1 IN PM

BEEN ON THESE ALL MY LIFE SO I KNOW HOW IT IS

 

[hawke86]

I don't know what you're talking about Dave. What kind of device?

 

[DAVE1967]

I don't know what you're talking about Dave. What kind of device?

You know , The device that ELDERLY PEOPLE have & wear when living ALONE at thier home

 

[BIGMAN131307]

You know , The device that ELDERLY PEOPLE have & wear when living ALONE at their home

Well that would be ok to have. But I really don't think it will help too much. If all you are having is the occasional Peti-mal it would cause unnecessary EMT visits. It would only benefit you if you always have clusters of them at a time. Or if someone with you believes you need immediate medical attention.

 

[morgan381]

The "help, i've fallen and can't get up" device may be helpful if you have seizures that lead to a sort of status epilepticus. Otherwise, like bigman said, it might cause unnecessary EMT visits. I don't think that type devise would be helpful for me. Good luck though. Get it if you think it will give you peace of mind or if you think you need it--as we all know, stress and worry can be a trigger...

 

[haird18]

Advice

What all of you are talking about is called a E.R.S.or emergency response system. It is very helpful because I have one because mutiple medical conditions and I am at home by myself alot of the time. These systems are beneficial for some people because the company keeps a record of your seizure types and medical conditions. Also each company requires you to designate several people who are key holders or responders to your residence and they will contact them first before automatically calling 911 for you. They will call you once a month to make sure your E.R.S. is functioning. There are two of emergency boxes the first one is a regular box where you push the button and they will call you and you answer the phone. he other box is more like a speaker on it , when you depress the button a voice comes over the speaker and can help you that way.

David Hair:clap:

 

[Zoe]

Dave,
Sounds like you are getting a pretty good warning of a seizure coming on. This puts you in a very good position to do something to stop it before it becomes full blown. Learning to do slow breathing exercises or relaxation techniques are two possibilities that come to mind. Have you tried anything to stop them when you feel them coming on? Mine used to trigger very extreme feelings of panic at times. Sometimes I could walk for long distances to stop them. I learned slow breathing and relaxation routines that helped a lot.
Here's a link on this for you to explore:

Epilepsy Ontario :: Relaxation Techniques... seizures (especially absence seizures), the benefits of the relaxation response are likely to help control seizures. Progressive Relaxation Therapy ...
www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Relaxation+Techniques

 

[DAVE1967]

HERE IN Kentucky WHERE I'M AT THERE'S NOT MUCH WALK SPACE (SIDEWALKS) HERE . I'M LIVING IN A APARTMENT AREA , NOT MANY SIDEWALKS . DAVE

 

[brain]

There are times I have to walk with a cane because
I am not too stable. But as far as seizures goes; mainly
mine are nocturnal: which most of them occur during my
sleep. But things have changed however where I am
experiencing them also during the daytime.

When it comes to Tonic-clonic (aka Grand Mal) - there
really isn't any warning and it just hits you suddenly. But
for others, I often get auras.

You might want to take a look at this Poll here and
review what others have posted as well; there is one
link there (but it is not exhaustive because there are
many other types of seizures but this link had the one
that had the most auras listed in there).

You will find this very interesting and the Poll is opened.

But as for me - I confine myself to a safe place as much
as possible or my son if he sees it (or his friends or neighbors
suspects it) - they will stop me; and pretty much sends me
to bed. My son will make sure I have taken my meds and
if it's almost time to take it, he'll have me take it early.

He will then monitor me from there.

But if I am home alone; it's scary and the Doctors do not
like this because I have multiple types of Epilepsies and
they are poorly controlled. Even if I trained myself, it does
not come with guarantees at all, no promises.


Experience AURA or AURAS?