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 Post subject: Erie and Frightening Sensations
PostPosted: Fri Feb 01, 2013 2:44 pm 
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Joined: Wed Oct 31, 2012 1:43 pm
Posts: 20
Hi
Im new to the forum ,so here goes , Im on Keppra 1750mg a day increasing to 2000mg soon for Mild Epilepcy but i get Erie and Frightening Sensations (Understatement) which last about minute and leve me distraught . My Nerologist has been made aware and said its related to my Epilepcy.
Has anyone else had these Sensations and is it common ?

Keith


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Fri Feb 01, 2013 4:02 pm 
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Joined: Thu Sep 22, 2011 11:48 am
Posts: 3226
Location: West Midlands
Welcome to the forum.

It depends what kind of epilepsy you have but if you have TLE (temporal lobe epilepsy) as I do, then when having simple partial seizures it's very common to get a feeling of impending doom with them. I get that along with a feeling of dejavu but after years of having them I've kind of got used to them and talk myself out of the scary feeling. It's cos that's the part of your brain that controlls our emotions where the epileptic activity is coming from.

So that could well be part of your seizures, if so the neuro should be able to discuss this with you.


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Fri Feb 01, 2013 8:37 pm 
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Joined: Wed Oct 31, 2012 1:43 pm
Posts: 20
Thanks for your reply . I have TLE / dejavu and thought the Nightmare eerie feelings i had were unique to just myself where they are awful . I hope my medication will supress the sensations eventually and i will try what you do and talk myself out of it when i feel it starting.

Can i ask if you are on the Keppra Medication and do you find it helps?

Many thanks for your info.

Keith


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Sat Feb 02, 2013 8:36 am 
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Joined: Wed Oct 31, 2012 1:43 pm
Posts: 20
Hi,Thanks for your reply . Emms

The sensations i get start when i think about them, and then its a build up to a terrifying feeling ,when asked by my Nerologist what they feel like ,i find it difficult to explain ,i say its eerie,overwhelming nightmare,and terrifying , which leaves my depressed for a couple of hours.
The med im taking has improved on getting these feelings, but sometimes they still come back. Do you know if they will stop eventually ?
Iike you i get dejavue and i have the TLE (temporal lobe epilepcy) but are your Sensations as bad mine?
I will try your method to stop them ,but hopefully my increased pill dosage will help.

keeb


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Sat Feb 02, 2013 1:23 pm 
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Joined: Thu Sep 22, 2011 11:48 am
Posts: 3226
Location: West Midlands
Hi keeb.

My scary sensations along with the dejavu have been very strong in the past but not so bad now. Partly down to meds and partly down to knowing what they are, that the fear is not real and keeping on telling myself it's 'only' a seizure and it will pass etc.

Yes, I'm on Keppra and it has helped. I used to be on Tegretol too and was on that for 30 years but had to come off it due to oesteoperosis. They did try me on other meds to take along with the Keppra but the ones they tried didn't suit me and I'd been through the ususal ones already cos I've had epilpesy virtually all my life.

So now I take Keppra and Clobazam daily and they do help. I no longer get the seizures in clusters and althought they're fairly frequent they were daily at one time, now it's a couple of times a week so I don't mind that.

Can't say I feel depressed afterwards once it's worn off, but I do come back to my old self without feeling ill or anything much more quickly now. Unfortunately, as long as you're having simple partials, I guess that feeling will still be there when you have them cos it's part of the seizure, but the less you worry about it the better and with meds it may well improve in time.

Good luck. I know it's not pleasent.


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Sat Feb 02, 2013 6:57 pm 
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Joined: Wed Oct 31, 2012 1:43 pm
Posts: 20
Hi Emms

Thanks for info. I do worry and feel this adds to the condition after being diagnosed a year ago ,but interesting you mentioned the Clobazam ,I was perscribed 10mg tablets to take alongside may Keppra, but being a worrier i decided not the take them with Keppra in case it had a reaction and weaked the pills , I told my Nerologist and he said it was my call ,they are to calm me down.

I have stopped drinking to help, but i still get the sensations but not so oftern. I will consider Clobazam as you take it with Keppra.

I Think Depression was the wrong word to use , its more the emotion it leaves me in which is Unpleasent.

Thanks for your feedback ,its very reassuring. Sorry to hear you have had epilepcy for so long ,I admire you.


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Sun Feb 03, 2013 6:44 am 
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Joined: Thu Oct 07, 2004 7:20 am
Posts: 9046
Location: West Devon
Hi keeb,


Most people with E will get full control of their seizures on one or more of the Anti Epilepsy Drugs (AEDs) - roughly 70%. Of the 30% who don't get full control most fo them will at least see a vast reduction in the number and/or severity of their seizures.

What is a pain in the proverbial is that there is no way of telling in advance which AED (or combination therein) will work best for any given person, so many people have to spend quite some time trying different AEDs to find what works best for them.

The Simple Partial seizures are scary as, there's no doubt about that, but to a certain extent you do get used to them.

Good luck,


Dave xxx


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Mon Feb 04, 2013 3:42 pm 
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Joined: Wed Oct 31, 2012 1:43 pm
Posts: 20
Hi Dave

Thanks for your info. The Eerie ,Haunting Sensations are the worst part ,hopefully the increased in med dosage will stop this .
Its been nice to hear from others who have simular sensations as mine how they cope with it and that im not going awol.

Cheers

Keith


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Wed Feb 06, 2013 5:32 am 
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Joined: Wed Jul 21, 2004 2:35 pm
Posts: 18550
Location: Cornwall UK
Welcome to the forum take care luv Juliexx


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Wed Feb 06, 2013 10:17 am 
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Joined: Thu Sep 22, 2011 11:48 am
Posts: 3226
Location: West Midlands
Keeb, don't worry about taking Clobazam along with Keppra. it won't stop it working, it should actually make it work even better.

My neuro says that if I'm going through a bad patch with my seizures (say I went 3 or 4 days and was gettting them daily or more) I can gradually raise the Clobazam dose up to an extra 20mg a day then slowly over a few days, lower it back to 30mg a day again.

It works. We're all different though so I can only go on my own experiences. When I was in status and was having daily cluster seizures for weeks afterwards, the Clobazam stopped them altogether. I told my neuro that if I took enough Clobazam I was pretty sure I could control my seizures altogether, but after talking to another neuro they both came to the conclusion that as the drug can be addictive they didn't want me to stay on a dose more than 30mg a day or my body may begin to tolerate it and I'd just need more and more.

So I'm stuck with what I've got I'm afraid, but you do get used to that eerie feeling, honestly you do so hang on in there and as Dave says, you could get complete control. Most ppl do eventually.


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Mon Feb 11, 2013 6:04 pm 
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Joined: Sun Feb 10, 2013 12:16 pm
Posts: 29
Hi all

I am also very new to this forum. This is only my 2nd post. I have been wanting to reply to this topic ages ago but it took ages to get me registered.
I am 15 years old and I have TLE.
It was very interesting reading about this topic because I have very similar feelings.
Last year, I went into a lot more seizures that I do now.
Before my seizure starts, I always have what I call a "warning" which is a very very frightening feeling and I am very sensitive to any sound and if I do hear anything, I always seem to think I hear the same sound every time. Then I start to feel myself chewing a little and then I am not sure what is happening.
After some of them, I recover fast and I am fine but after others, I feel worn out and can't get my speech out properly.
This year I seem to have been having very few seizures but a huge amount of my "warnings".
Today at school I was fine until about 11:45 which was when I had a big patch of my warnings.
They feel to me to last about 20 seconds and I was having them every few minutes. I kept forgetting what I was doing. I was not able to go to my next lesson because I was still having warnings and I was worn out!
Today, I have only had 1 full seizure and all the others were warnings.
But having loads of warnings is worse than just having a few seizures.
I went to school most of last week because I was better then but I had missed the 2 previous weeks just because of these frequent warnings. I got told that I could try taking some different medication (My usual medication is Epilim Chrono 600mg bd) to see if it would cut down these warnings a bit. I took clobazam which I had taken before years ago and it had very bad side effects then. When I took it this time, it did cut down the seizures a lot but it still had side effects but the seizures came back again after I stopped taking the clobazam.
The doctors have told me not to take it again due to the side effects.
I am still having these warnings quite often as I am typing this.
It would be interesting to see if any more people have these feelings.



Ben


Last edited by Jamaro's son Ben on Tue Feb 12, 2013 8:28 pm, edited 2 times in total.

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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Mon Feb 11, 2013 6:36 pm 
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Joined: Wed Oct 21, 2009 9:06 pm
Posts: 546
Hey Ben,

Nice to meet you at last and welcome to the forum!

These warnings Ben are probably seizures in themselves and are referred to as simple focal (also called partial) seizures and some people with epilepsy suffer from these seizures alone. Often though they precede larger seizures such as complex focal/partial seizures or generalised seizures such as tonic-clonics. In this context they are often referred to as warnings or auras. There's more information on seizures if you want to check out this link http://www.epilepsysociety.org.uk/About ... y/Seizures

Fear is actually quite a common place sensation during focal seizures in TLE, as the Temporal Lobe contains the amygdala, which plays a crucial role in the experience of emotions. I imagine you'll find many people on here who experience fear as part of their seizure, I myself used to experience it as part of my simple focal seizure.

It must be frustrating having to put up with all these seizures but if you've got any questions or just want to vent your feelings, we're all here on the forum to listen.

Sinead
x


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Mon Feb 11, 2013 7:05 pm 
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Joined: Sun Feb 10, 2013 12:16 pm
Posts: 29
Hi again

It is funny that you talk about the "amygdala" because I have had almost all of the left side one removed! The doctors are now a little confused about what is causing the fear!
I have had Brain surgery twice, the first time removing most of the left hippocampus, the second time, removing the para hippocampal gyrus, the amygdala and the tail of the hippocampus all on the left side.
I don't know if it will be possible to have surgery again.
I think I will have to keep trying different medications.




Ben


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Wed Feb 13, 2013 1:44 pm 
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Joined: Wed Oct 21, 2009 9:06 pm
Posts: 546
I can see why your doctors would be confused! Well the best of luck with your meds Ben.

Sinead
x


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 Post subject: Re: Erie and Frightening Sensations
PostPosted: Sun Feb 17, 2013 9:37 pm 
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Joined: Tue May 17, 2011 2:59 pm
Posts: 964
auras and deja vu's could be so frightening but what i found was worse though was that i was frightening those nearby cos apparently my face would be transformed by fear and I would become very frightened and start to hum to myself Do you get palpatations as well as a sort of prior warning?


Last edited by Cassandra on Mon Apr 29, 2013 3:39 pm, edited 1 time in total.

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