Newbie & Petrified.

[Nakamova]

More likely seizure than dementia... When my seizures weren't controlled, I had similar blanks occur while talking on the phone, though briefer. Mine were a bit as if someone switched my brain on and off quickly. I would know that I had missed something in the conversation, but would just try and fake it...

 

[aggy84]

I tried ocarry on talking but couldn't actually speak. I just mumbled. My friend picked up on it. She said when I tried to talk I made no sense at all.
It's so embarrassing, why can't I just say I'm having a seizure give me second. I can't I'm absolutely scared silly I can't say a thing. I've felt so drained, tired and low from it. I used to be such a happy girl... This is ruining my life. :-(

 

[CQ:)]

Hi Aggy,

Welcome to CWE.

My seizures are usually auras followed by a complex partial seizure.
I usually remember the start of the aura then after that I don't remember much until after I come out of the seizure.
If I am with someone & I feel an aura come I will think to myself to try not to say much so I don't worry the person I'm with. It never works that way though, I have had family & friends who have witnessed my partials tell me that I have been talking to them & it has made no sense. Other times though I have had my friends & family say they have gone to speak to me but when I didn't answer they noticed I was staring into space & my eyes were glassy.

I was just on the phone to a friend and whilst she was talking the dejavu came over me, along with utter fear. She continued to talk and asked me questions... I couldn't talk. I couldn't even think of words. I was so scared. She said when I started talking again was I okay, she said she noticed something wasnt right. I'd had one of those funny things (aka seizures) but I don't remember it. Only the feeling attached. I have not a clue what my friend said on the phone....
Is this dementia?! or a seizure or what is it? xx

Like Nakamova said it sounds like what you experienced on the phone is more likely seizure related.
I remember once I was talking to a friend on the phone when I felt strange & after I started feeling strange I went to speak but nothing came out of my mouth. I ended up sitting down taking deep breaths until the strange feeling went away then continued to speak to my friend. I can't remember but think it lasted a couple of minutes but by the time I was able to speak again I had forgotten what I was talking about. It was scary at the time because it was only about 6 months after my seizures started happening again & at the time I didn't know the strange feeling I felt was an aura.

 

[gigi]

veteran

seizures for almost 45 years now. A tough diagnoses to swallow, but you will be okay and learn to adapt with not just meds but preventive measures to have the best quality life possible. Grieve for the loss of control, and move on to be the best you can despite of E. Dark days and bright days - you will have both. Sounds as though you take good care of yourself - good start!! Find out what triggers you have-stress of any kind might trigger a seizure. What works for some of us may not work for others. A trial and error kind of condition. Best of luck and keep coming back to CWE for info. and the "I am not alone" encouragements!

 

[aggy84]

Thank u all!

It means a lot. Its been a battle for 6 years not knowing... and I still dont fully know yet until my MRi & EEG. I'm worrying a bit that if its not epilepsy... am i just having panic attacks? Thing is i dont hyperventilate or feel im having a heart attack... i just freeze and have the feelings/symptoms I described in my first post.

I wish the NHS had fast tracked me and Im almost praying its epilepsy so i have an answer and can start fixing myself.
Anyone else able to describe their complex partial seizures and do they match mine? xx

 

[qtowngirl]

the dejavu came over me, along with utter fear. She continued to talk and asked me questions... I couldn't talk. I couldn't even think of words. I was so scared. She said when I started talking again was I okay, she said she noticed something wasnt right.
Is this dementia?! or a seizure or what is it? xx

Welcome Aggy,
This is likely a simple partial seizure (aka auras). What you describe fits to a tee. There is quite a difference between simple and complex, and it is common for a simple to lead into a complex. One of the main differences however is that with a simple partial you will remember it all, with a complex you won't though you are still in some state of consciousness. There are four main categories of simple partials, and the deja vu/fear falls under 'Psychic.'
I have had S-P's for 18 years now and the deja vu/fear you're describing is identical to what I go through.
There are steps to the whole process however, try not to feel like this is the end, I know it's hard! Having the tests such as mri's and eeg's are a great start to eliminate possibilities.
Like everyone else has said, know you're NOT ALONE. This site is a great place to be. (((HUGS)))

 

[aggy84]

Thank u that means so much to me. Because its been brushed off so much by gps, friends and family u start to think 'am I thinking too much into this'

I wish u all lived near to me so I had people to meet and be with. It's so hard all this waiting about. I'm assuming as the neurologist said he must be right. I think I'm just anxious from the unknown.

Qtowngirl have u managed to sort yours now? Xx

 

[qtowngirl]

I tend to have mine first thing in the morning/when I'm half asleep... do u all have certain times?

Most of my simple partials, a good 90 per cent, hit when I'm starting to doze off at night. I'm getting so used to that being the time that if I've had a more stressful day than usual I almost lay there and wait for it. Like 'do-dee-do, c'mon let's get this over with, la-la-la OH! There you are I knew it!!!'

Like Cint said though, they can change over the years. Having them while drifting off only started about a year and a half ago. Through my teenagehood and all of my 20's they were all while awake and doing whatever, could be anything. And for a few years they happened every three weeks like clockwork (not catamenial), and lasted 2 to 3 days at a time every time. Felt like a prisoner in my house, could barely get out of my pyjamas and was too terrified to do anything alone in the house except go to the bathroom. I get the fear, with you on it all the way.
SUUUUUUUUUCCCCCCCCCCCCKKKKKKKKKKKKSSSSSSS!!

 

[aggy84]

Are u on meds now? I just don't want it to turn out me being ott and it just being panic attack/anxiety attack. I almost want it o be seizures so I can start forgiving myself and get on with my life. If its just panic attacks/anxiety attacks I can't see me fixing them as its being going on for so long, I've tried everything to stop them too.
Arghhh I wish the NHS wold hurry up. Xxx

 

[qtowngirl]

Thank u that means so much to me. Because its been brushed off so much by gps, friends and family u start to think 'am I thinking too much into this'

I wish u all lived near to me so I had people to meet and be with. It's so hard all this waiting about. I'm assuming as the neurologist said he must be right. I think I'm just anxious from the unknown.

Qtowngirl have u managed to sort yours now? Xx

No unfortunately. I'm like Cint, in the refractory percentile (unmanageable, resistent to medications). Three different meds and I still have S-P's along with the occasional tonic-clonic. I was however recently diagnosed with Hippocampal Sclerosis so surgery is the option they're looking at now.
Pretty hesitant tho, nothing scares the shit out of me more than anything in my 33 years. Don't know what to do but know that meds will never work.

For me stress is the main factor, but my lifestyle does not allow much change for that. A strong support system is key, I have a few friends I couldn't get through life without. How are your close friends? Understanding? Supportive?

 

[aggy84]

It truly does suck! Xx

 

[qtowngirl]

Are u on meds now? I just don't want it to turn out me being ott and it just being panic attack/anxiety attack. I almost want it o be seizures so I can start forgiving myself and get on with my life. If its just panic attacks/anxiety attacks I can't see me fixing them as its being going on for so long, I've tried everything to stop them too.
Arghhh I wish the NHS wold hurry up. Xxx

I've been on meds since diagnosed after two tonic-clonics in 2003.
I can also say I relate to the 'what the hell?' feeling you're going through, as I was diagnosed with PTSD in 1994, seen a psychiatrist, took zoloft, yada yada, then figured out in 2009 that my 'episodes' were simple partials all those years.
I had already been living with epilepsy for over five years but to learn it had actually been misdiagnosed since I was 15 was too overwhelming. I thought it was one thing all along, but had the wrong specialist, wrong drugs, all of it. Was very hard to swallow and caused a lot of reflection that's for sure.
The only silver lining that I came up with is that I wouldn't have had the life I've had. Had I been diagnosed with E at 15 and living at home, I wouldn't have moved out at 16 and started my own life, a very accomplished one at that I must say, so I wonder from time to time if it's maybe better that that d-ckhead was wrong.

 

[aggy84]

Wow, my goodness I see why u are stressed. It would really stress me. I pray medication works if it goes that far. I wish u all the luck Hun, big hugs being sent.
They are more so now. Everyone brushed me off. Friends and family included they just assumed I was being wet and that it was panic/anxiety and I was egging it on. Since my neurologist appointment people have been different with me. My mum apologised and has constantly said how guilty she feels. I just said its in the past just be with me in the future. To be honest because my memory was blurred after each attack I quite possibly couldn't explain it very well. I have just been so confused and embarrassed I tried to just 'man up' after each attack. Because everyone thought it was just me encouraging them I never said to anyone when I was having one/had one. I've made it more vocal when I've had one now and my mum has picked up when I have because I will be a bit dozey, confused and be beating myself up about how I'd have one. I do sometimes think my worrying about it encourages them... Can that happen? Or if id had a seizure in a certain place or doing a certain thing... I'd half remember then sometimes have one... Is that the stress of it do u think? Xx

 

[qtowngirl]

I'd say a lot of the stress you're experiencing right now is due to the unknown. That is one scary feeling when all you can think is 'What is it? Will it get worse? Am I causing them? What if it happens in public? When will I get to drive again?'... and on and on.
Give yourself as big of a break as you can, because if it truly is complex partials and you have Epilepsy IT IS NOTHING YOU DID. It will either be due to an abnormality or you will be one of the 70 per cent of Epilepsy sufferers with no known cause. There are of course things a person does that can trigger them (alcohol/drugs, not sleeping, not eating properly, overworking...), but these are not the causes of Epilepsy, only triggers that can bring a seizure on. Sounds though like you look after yourself, which is great.

As for those close to you and you beating yourself up when you come out of one, if you can just kick that to the curb. This is not your fault, it's a bitch to believe it but majority of the time Epilepsy just happens. It's not like you smoke and develop lung cancer, or live a life of poor diet and develop diabetes. Epilepsy is a disease all its own, and a bit of a silver lining of it being incurable (HUGS in case that was news) is that you can look yourself in the mirror every day knowing you did not cause it, it was out of your hands, NOTHING you could have done.
So for now until you know more through tests and neuros and an official diagnosis (if that is the case), just know you're doing all you can with what's been placed in front of you. Inform close friends and family how it feels and what they'll see when it happens around them, and for everyone to just accept this is what you're going through and be as strong for you as they can. Talk about it as much as you want; I know 'manning up' feels like the thing to do, but letting your guard down and allowing yourself to accept how you feel and that this may be a new life will help lower stress, which may help lower the amount of seizures.
I wish you all the best and pls keep us posted.

 

[aggy84]

You have been such a fab person to speak to thank u for calming me will keep u posted xxx

 

[qtowngirl]

Anytime. I'm on almost every day, or private message me if you want.
Take care for now!

 

[Jmazzolini]

Hi Aggy. I'm 25 and was recently diagnosed too.
My seizures seem similar to yours - I have trouble getting words out and I can hear people talking but don't understand them. EVerything is so hazy and a giant blurr. My memory also goes a bit.. I've been watching an episode of Skins every night for the past 3 weeks and yesterday I forgot what show it was I watch! Don't let it get to you.. think of it like I am (shit happens!) I tend to get more seizures when I'm tired or have't eaten properly. (Just a tip!)
Take care xx

 

[aggy84]

Hey,

Thanks for the message.

I'm on medication now, losing my license was hardest. I'm still being tested for other problems, as they picked up other things after my first MRi scan. I had my 2nd last week and have been called in for my third.

I guess I just hate the memory loss, how confused I am during and afterwards.

What meds are u on? How long have u been experiencing yours for?

 

[qtowngirl]

Hey girl, just found your post.
So... it is Epilepsy then. Are you okay? Was the official diagnosis harder to swallow than you thought it may be? I'm thinking there was a bit of relief there as it wiped out the question of panic attacks?
Well, if you feel better I'm happy for you and if you don't I'm here for you.
Love love love, Qtown.

 

[AngelwithDentedHalo]

Hi aggy,

I had a grand Mal January 4th 2011, two days out of the hospital for kidney failure and dehydration and high potassium. I don't remember a thing. I don't have a definite diagnosis yet as the first EEG was normal but the MRI showed a brain bleed on the right side of my brain. They think it's from a head trauma and I've had a lot so it's a possibility and if so, it puts me more at risk for more and I'm sure I have some partial complex seizures and the records even say it but I have another EEG coming up and hopefully will tell something.

Sorry about what you're going through, welcome to CWE