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Epilepsy Advice?


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Can anyone help with a possible epilepsy question please?

I have an appointment on Wednesday with a neurologist regarding possible epilepsy. I am very worried about this as I don't want to lose my driving licence (on top of all the other stress). Can any one tell me how the test is carried out and will it say I definitely do/don't have epilepsy?

I do not have full on fits, I fall over a lot (I think this is related to my balance?) and am not always sure how I fell and quite often 'fade out', where I think I have just been daydreaming and am surprised that people are looking at me, waiting for a response from me. I am sure this doesn't last more than a few seconds? I am almost 3yrs post SAH and have always thought these falls & daydreaming episodes are just par for the course after SAH. I would be really grateful to hear if anyone else has experienced the same without being diagnosed with epilepsy.

Thank you

Michelle

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There was a member on here who had these "absences" and I don't think she was diagnosed with epilepsy. In fact the medics didn't know what it was, if I remember rightly, and the saga still continues.

I will get in touch with her and ask if she would mind taking a look at your post.

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morning michelle

its very easy for the hospital to diagnose epilepsy by doing an eeg which is a test which is non evasive they can put sensors onto you scalp with glue and moniter you during a test which include flashing lights like a strobe only then can a claim be for epilepsy be diagnosed im not sure what is wrong but having absenses can be explained by the nuerologist so dont dispair just yet you may have to lose your lincense for a little while or try not to drive untill you have been checked out please . do you have abcenses at certain times or are they ramdom times you can always give me a ring any time take care and look after yourself hugs and cuddles

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Thank you for that info paul, sounds painless enough (apart from getting the glue out of my hair afterwards:lol:)

It seems to be at random times with no pattern. It doesn't bother me too much, I've just got used to it being that way, the problem is now that I've spoken to a doctor about it my licence is an issue.

Michelle x

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I think I have just been daydreaming and am surprised that people are looking at me, waiting for a response from me.

Hi Michelle,

Thank you for posting this thread. I find myself in this sort of situation often. I am really not good at putting things into words for the doctors so, find it difficult to get any advice about things. I had no idea this could be linked to epilepsy and just assumed it was due to tissue damage 'up there'. I was feeling a bit resigned to the fact , this is the way I will be for always.

I am seeing my neuropsychologist tomorrow and plan to use your description of it to my own ends.

I am interested to read replies to this query. Thanks for that.

good luck on Wednesday. Please let us know how you get on.

love sally xx

ps, I will work out how to do this reply with quote thing properly one day! Doh!!

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Hi Michelle

I'm finding this very interesting. When I came out of hospital I would have periods of confusion. I wouldn't know what had happened, why I was at home etc. I always knew who I was and where I was but for an hour or two I would just sit on the sofa and wait for it to pass. The first few times it happened it was quite scary but (having work in a stroke department) I knew to try and not get anxious as this makes it worse. My GP knew and was keeping an eye on it but as it was getting better it was put down to part of my healing process. But over the weeks it lessened to lasting for about minute. One example: coming back from pyshio on the bus I was looking out of the window and suddenly realised I didn't know where I'd been or why I was on the bus but I waited for that feeling to pass and after about a minute I remembered everything.

Sally I thought it had something to do with daydreaming too and memory. I do think I sort of zone out for a bit and like you Michelle just accepted it. I'm now 2 years post SAH and it still happens and there is no pattern to it with me. So I shall be very interested to hear how you and Sally get on.

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Liz, as you & Sally have something similar I am hopeful that it is just part of having SAH. I will post after appt & let you & Sally know the outcome.

Sally, I don't know if you are driving again yet, but I kind of wish I hadn't told anyone as I'm 'advised not to drive' until this is sorted out and as my son is still recovering from his op we are now trapped at home most of the time. I am going slowly mad!!!!!

Michelle x

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hi girls

it seems to be a common thing after head injuries the dr will sort it out what worries me if you are driving and you have an absence you can travel quite a distance and i hate to see any of you getting hurt i do know people who have or suffered from epilepsy then gone onto absences lasting up to a couple of minutes the condition can be sorted out very quickly i just

hope they can help you all

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Hi all, I have the 'zone out' thing too. Usually as a passenger in the car. Suddenly I'll be aware that I don't know why I'm in the car. It only lasts a few seconds but as it all comes back to me my head hurts similarly to an overworked arm or leg muscle. I also had it while in the trams in Vegas moving from hotel to hotel. I haven't noticed it when I'm the driver or when I'm walking - perhaps because I have to pay attention at that time and can't drift off in a day dream. Maybe these 'daydreams' are little rests for our brains? Or maybe the movement lulls us off to 'sleep'.

Sandi K.

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Hello again,

Good news!:-D I just got back from my neuropsychology appointment. I mentioned about these incidents and she assured me they were just concentration lapses. I have noticed I am always serving customers in the shop when they happen. I think she means I am trying to think about too many different things at once. Therefore I'm not paying attention at the right moment. Am glad to hear that they aren't neccessarily a symptom of epilepsy. Hope everyone elses is a triviality too. :wink:

Sally xx

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Hi Michelle/Goldfish girl,

I am the one Penny's mentioned...also a Michelle!!:-D.

I had the epilepsy test and the lady said i was practically asleep so they told me it wasnt epilepsy. I was told i have NEADS, None epileptic attack sydrome (phew a mouth full to say and type) The attacks i have do look like epilepsy in the way of body jerks etc but unfortunately there isnt a cure and there isnt any tablets.

I thinks the worse ones upto now are when i was having my hair trimmed by my sister and i was talking away and suddenly stopped all i remember is her asking if i was ok, not having a clue what she was talking about...she said my eyes rolled upwards and my head dropped forwards my right arms was twitching..the other was when i was talking to my hubby stood up then came round sat on the floor not having a clue again what had happened, i have had lots more during sleep and i do lose minutes during the day even watching tv my eyes dont close and i dont have any warning.....and sad to say i cannot drive...but heyho im still here and thats all thats matters:-D.

There was one funny one when i was watching dancing on ice and was happily watching then complaining why a couple had got such high marks when they hadnt done any dancing!!:lol: my two kids thought it was so funny.

Can i ask do you feel as though you are daydreaming?

I hope this helps in some way and i will keep my fingers crossed that it everything is ok for you.

Love luck and laughter

Michelle C xxxxxxxxxxxxxxxxxxxxxxxxx

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Hi Michelle C,

Thank you for that information. I have never heard of that, it must be hard for you to deal with if there is no way of controlling it? I have to say I laugh at a lot of my 'moments' too, what else can you do???? Apart from the occasions when I fall I don't think there are any physical signs like eyes rolling or twitching, I'm just not there momentarily. I do think i've just been daydreaming but it must be for a while if other people have noticed (it also happens while people are talking to me - not very flattering for them I'm sure:lol:)

I am going for the test today, so hopefully I'll have an answer one way or the other later on.

Thanks again

Michelle x

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I have lost my licence for 12 months but no epilepsy diagnosis:frown: I was told this before the EEG was carried out - I have not been told the results of this test yet.

Dr also thinks the falls are related to my poor balance but the 'day dreaming' moments caused a problem. I'm thinking '2nd opinion'as I felt the appointment was only a few minutes and a no driving statement was issued before there was even a test. I appreciate that everyone told this will go through a period of denial but I don't feel I was allowed to expand and I also wasn't able to explain myself properly because I was tired (after 2 hour trip) and confused by being in strange surroundings with unfamiliar people. I also don't remember exactly what was said apart from the bit about no driving!!!

I also laughed at being told the wiring in my brain may be faulty, making it look like I had a problem with appropriate social behaviour but I was actually thinking about my ex husbands often used insult that I'm "no wired up right":lol:

Michelle x

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Oh Michelle, I'm so sorry to hear about the driving. Are you able to get a second opinion in the UK? It seems unfair that you travelled 2 hours to be 'written off' in a matter of minutes and no test given. It is frustrating trying to explain to the docs how we feel when we need our brain to be able to do that! I started keeping a diary on Feb 10th and although the doc hasn't asked to view it it helps me summarize my symptoms.

Sandi K.

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Hi Sandi,

I have never asked to have a 2nd opinion before but surely it's possible if you're not happy? I'll let you know! Or i'll have to move abroad where it is ok to ask hee hee.

I feel shallow being so gutted at not being allowed to drive, I know I'm lucky to have the physical ability to do so but my licence is my freedom. I can walk to the shops for food etc but my mental health needs the release of driving to the woods or the beach with my dog to recharge when i'm feeling down. I can walk to the woods (beach a bit further) but I would have to pass & interact with people to get there. I don't like being around people these days and if i'm not feeling great I can drive to the beach/woods and just sit while my dog runs & swims - balm for my soul. Also, as my son is recovering from a brain op I can't even walk to shops etc with him yet (2 months later) and the walls are closing in.....

Michelle xx

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hi michelle

im sorry that they have told you not to drive but you have every right to ask for a second opinion and if poss take someone with you who ask write down the questions and answers dont lose hope just yet there is light at the end of the tunnel the absenses will fade in time hopfully but you could ask what the eeg showed good luck

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Thank you Paul

I am totally gutted, but not giving up yet - if the test was clear I will try to appeal. I'll definitely take back up next time as I felt like questions were being fired at me, I couldn't keep up, it was awful and I probably didn't answer well.

Take care, Michelle xx

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Michelle and others.

I'm 13 years post stroke epilpsey--I live with my condition, it doesn't run my life. Yes it was hard at first, but there is help and support out there.

I'm more than willing to talk to anyone, if they feel it will help.

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It took me 6 months to get my licence back even though my neuro had said the first 2 months are the critical ones in terms of fits etc. It is commonplace for SAH patients not to be able to drive straight away & for those that are coiled it's usually a ban for a year because coils are not as stable as clips.

It's best to take the advice of you neuro & yes it's frustrating but if anything happened when you were driving you would never forgive yourself.

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