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Author Topic: Scared I may have epilepsy  (Read 595 times)

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Offline Jonnysmith

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Scared I may have epilepsy
« on: June 01, 2014, 08:01:59 AM »
For a long while now I am having what can only be described as temporal lobe seizures from what I have read on google, I get frequent episodes of deja vu and these strange funny turns where my vision goes funny, dimmed vision is the only way I can describe, then everything around seems surreal and dreamlike for about 30 seconds or so then I get fast heartbeat and pressure in my head before everything returns back to normal leaving me a bit shaken and confused. I have had EEG and MRI which has come back clear and neuro says he doesn't feel it's epilepsy but many websites say that you can still have epilepsy even after given the all clear. I am so scared and I have just started taking citalopram with beta blockers. Is this a sign of epilepsy starting at 33?
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Offline Dayvid

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Re: Scared I may have epilepsy
« Reply #1 on: June 01, 2014, 08:55:15 AM »
Hey, i hope my story helps.

A few years back now i started getting DeJavu episodes. They were intense... more intense then the normal DeJavu everyone experiences. They started out of the blue and after that i started getting random thoughts in my head. What I mean by weird is, I can't even remember what they were now. They didn't make sense.

Bare in mind this happened on and off for a little while. They came AFTER i had experienced derealization/depersonalization over severe anxiety. I too was scared about seizures. So much so, that at one point, I was CONVINCED!

Anyway, move forward a little while and a google search brought me to "psychogenic seizures" basically, they aren't epileptic and instead they are triggered by stress. While I was never diagnosed, when I thought about my situation it finally made sense. I had just been depersonalized for 4 months straight and extreme anxiety for a fair few years before.

When I started to rationalize with myself the events started to stop. They haven't happened in years. No more DeJa vu (other than the usual from time to time) no more strange thoughts and no more worry about what's going on.

Just remember that STRESS and ANXIETY can cause a LOT of freaky things. No one person is ever 100% the same. DeJavu is actually listed as a symptom of anxiety.

You've had all the tests, trust your doctor and use my story if it helps. This sounds like it could be just a severe case of anxiety messing with your mind.
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Offline Dayvid

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Re: Scared I may have epilepsy
« Reply #2 on: June 01, 2014, 08:57:46 AM »
Just an edit really...

My "strange thoughts" happened DIRECTLY after the DeJavu - They were the same "event" if you will, they always followed after the dejavu.

If you need anymore help, drop me a message. Always happy to help. I KNOW how scary these can be. And although my story doesn't match yours 100%. It's rather similar.
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Offline Jonnysmith

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Re: Scared I may have epilepsy
« Reply #3 on: June 01, 2014, 10:12:01 AM »
Thank you v much for the thorough reply Dayvid, what I am struggling with is these intense episodes happen even when I am relaxed and not thinking about it. Sometimes it's not even deja vu I will just get this strange head sensation and my eyesight will go foggy or dim and everything around me feels so dreamlike and then I come out of it. Could this really be anxiety? If so I have just started citalopram and I had a really bad episode yesterday that I was convinced I would collapse into a seizure. I am so scared
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Offline bpadilla49

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Re: Scared I may have epilepsy
« Reply #4 on: June 01, 2014, 03:24:16 PM »
I, too, am in your shoes. I believe I'm having simple partial seizures. Lately I'll get very intense deja vu. For the past 3 years off and on I'll experience olfactory hallucinations, and for the past 10 years I've experienced disequilibrium for a second or two. None of these things happen together, always at separate times. I have a neuro appointment this week, but I'm super scared I have a brain tumor.
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Offline Jonnysmith

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Re: Scared I may have epilepsy
« Reply #5 on: June 01, 2014, 04:08:38 PM »
Hi b Padilla thanks for the reply, sorry to hear your going through thus and I am sure you will be fine and given the all clear. I wish you the best and please do let me know how you get on, the seizure episodes I get are my biggest fear in life and I cannot get to grips with these intense deja vu and dreamlike dimmed vision episodes. It's so hard to explain to anyone when it happens. Is it possible these could be seizure episodes and without meds can this go worse?
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Offline bpadilla49

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Re: Scared I may have epilepsy
« Reply #6 on: June 01, 2014, 04:22:25 PM »
From what I've read (thanks google) the seizures won't typically get worse unless the underlying condition causing the seizures gets worse.  If you've seen your doctor and he doesn't think anything is wrong, you have to try and believe that. What really scares you when it comes to seizures? You've had an MRI done, so you know there are no tumors, aneurysms, developmental abnormalities, ect. What's the worst case scenario? If you actually do have a seizure where you black out, you'll go to the ER, they'll do another MRI/CT scan on you (or maybe they won't since you've had one recently) and tell you to follow up with a neurologist who will probably order an 8hr EEG or even a sleep study. What specifically scares you when it comes to seizures? I'm not so scared of the seizures themselves, but the underlying causes of seizures (brain tumor, ect). It's important for you I know that if this is true epelipsy, it can have an onset of ANYTIME in life and often, there is NO underlying cause.
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Offline Jonnysmith

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Re: Scared I may have epilepsy
« Reply #7 on: June 01, 2014, 04:34:57 PM »
I am more scared of what it would feel like to blackout and when you jerk or shake how it would feel, also the fear of the unknown scares me and the fact epilepsy can develop or happen at anytime, I am worried sick. Yes I know that my scans were clear but even if only they told me that these deja vu and funny episodes I get are not seizure related I firmly believe they are seizures
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Offline bpadilla49

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Re: Scared I may have epilepsy
« Reply #8 on: June 01, 2014, 05:06:39 PM »
Well I hope you take comfort in the fact that hardly anyone dies from a seizure. And from the stories I've heard, you don't remember much of the seizure after it happens (if it's the type where you actually black out) - and they only last for a few minutes.
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Offline Jonnysmith

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Re: Scared I may have epilepsy
« Reply #9 on: June 01, 2014, 05:56:12 PM »
Would love to say I can take comfort but I can't unfortunately and even worse is my symptoms are so much the same as them of epilepsy. So basically your never free from this condition ever worse thing is I could be mid diagnosed and things can go worse
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Offline Dayvid

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Re: Scared I may have epilepsy
« Reply #10 on: June 03, 2014, 03:37:06 PM »
You both sound like you're in a verrry similar situation to me a few years back.

I got olfactory hallucinations. Still do! Smoke is my main one - after all these years it's either anxiety or my ongoing sinus problems.

Dejavu CAN be caused my anxiety. Non psychogenic seizures are worth looking up if you believe they are seizures. Anxiety messes us up!

The dream like state may be similar to what people (including I) have had - Depersonalization/Derealization.

IT doesn't have to happen when anxious. Mine never did. They were out of the blue. Just because you may feel calm for a little while doesn't mean your body isn't anxious. A LOT of anxiety runs in the background, subconsciously.

I've had the intense dejavu. I've had the strange smells and i too was convinced i was having seizures. I'm here, a good 2-3 years later and i realised how much anxiety can cause these things.

TRUST me, please. Sure get checked out if you feel necessary - it's always a bonus. But if you're on these forums with these symptoms - There's a good chance, that like me, they are being caused by anxiety.

Just as an added - vision problems are VERY common anxiety symptoms. Especially during a panic attack etc. Even when not, too.
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Offline bpadilla49

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Re: Scared I may have epilepsy
« Reply #11 on: June 03, 2014, 03:42:25 PM »
Thanks Dayvid. I'm comforted anyway. Still stressing about neurology appointment tomorrow (of course)
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Offline Dayvid

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Re: Scared I may have epilepsy
« Reply #12 on: June 03, 2014, 03:59:58 PM »
I wish you all the best. I know how tricky and scary these things can be.

But after so long (3 years, right?) things would have gotten worse or OBVIOUS. If you're on these boards I would say anxiety may be the culprit.

Maybe after tomorrow you might get some much needed closure. But please be aware, going in to this, that if you've had anxiety it can cause SO many symptoms it's unreal.

Mine haven't happened in 2-3 years (i get smoke smells. They are more IN the nostril rather than a scent - if you get me?) these have got better too... but they don't scare me like they used to.

After i began to realise these COULD be anxiety - it kinda fell in to place and made sense. I'd been through DP/DR and my mind was messed up. For me, it wasn't a long shot to see how anxiety can cause this.
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Offline bpadilla49

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Re: Scared I may have epilepsy
« Reply #13 on: June 03, 2014, 04:20:03 PM »
Mine haven't happened in 2-3 years (i get smoke smells. They are more IN the nostril rather than a scent - if you get me?)

That's exactly what it is! IN the nostril - like, WAYY up there. They're usually pleasant smelling though, for me. And the deja vu is unreal. It's so intense. Last month one day, I was on the phone with my mother, and it was like I KNEW what she was going to say next. Very strange feeling. Sooo scary! Really hoping for some closure tomorrow.
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Offline Dayvid

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Re: Scared I may have epilepsy
« Reply #14 on: June 03, 2014, 05:49:07 PM »
Yeah! It's in the nostril. If I smell other things, they smell normal at the same time i get this "sensation"...

I remember when I was really bad, in tears, my nose was running (TMI) and often I smelt it then. It would just come on. So, that suggested to me, allergies/sinus things.

Anyway, 3 years on and it hardly happens anymore. Logic dictates, if it was serious, it would get worse.
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