Epileptic episodes: Hi everyone. It's been a while... - Headway

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Epileptic episodes

pleyland profile image
15 Replies

Hi everyone.

It's been a while since I've posted anything. Busy getting my life in order.

Now I feel that I'm just getting on top of things the doctors say the funny turns I've been having are epileptic episodes and they might take my driving licence away for a year. Crazy thing is if I have a year like the one I've just had with just episodes, ill be allowed to drive!! I live in the sticks so would probably have to move house. Has anyone had experience of episodes and driving bans?

Cheers

Paul

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pleyland profile image
pleyland
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15 Replies
cat3 profile image
cat3

Hi Paul. What a rotten disappointment for you. More disruption is the last thing any of us need so I'm sorry to hear about this setback.

I was really lucky to be driving again three months after my SAH and although I'm left with residual problems, they're not ones that affect my driving. I hope there'll be other members who have more insight and can offer some helpful ideas.

Could it have been these episodes you were having when you believed you were suffering from panic-attacks ...............just a thought.............

Have the doctors suggested medication to control the condition ? Love Cat x

pleyland profile image
pleyland

Hi Cat, The crazy thing is I have been driving perfectly safely for the last year since my stroke. They will very likely allow me to drive in a years time. The problem is the DVLA regulations say I should be banned for a year following diagnosis so they can assess me. If they had diagnosed me a year ago I would be ok to drive.

BettyS profile image
BettyS

Hi Paul,

Sorry to hear that you have been having a rough time.

After my TBI I was told I had developed epilepsy which takes the form of loosing the control of the right hand side of my body. I to was told I had to stop driving, which I did. However, it is unclear now whether my involuntary movements are epileptic or not. Very long story, but I have had an extremely rough ride through the NHS.

So in my opinion if you are going to be given an epilepsy diagnosis or not make sure you get a formal diagnosis which is as you probably know, is done via an EEG and a neurologists who is good at listening,because an EEG has to be read alongside an accurate patient history. The neurologists we have met only have listened to what they want to listen to. Make sure you are happy with your neurologists and ensure you have felt listened to.

Second bit of advice, if it turns out your episodes are epileptic, make sure you look at the driving licence rules. The rules have changed this year. I have not read them for a while, but I seem to remember if you do not loose consciousness when you have a seizure you may not have to surrender your licence. Look at Epilepsy Society website and I think it is all on there and or ring the Epilepsy society helpline.

Finally, they do not take your driving licence of you, you have to surrender it. If you do not surrender it and you haven't followed the driving licence medical fit to drive rules (i.e. you are not medically fit to drive and you have been driving) and the DVLA find out, you will have to resit your test. If you are deemed medical unfit to drive and you do surrender your licence when you apply to get it back, you get if back with just a medical report from your specialist.

So I suppose all I am saying is do you research. get advice and make sure you are confident that you are epileptic. I feel that it may be standard neurologist patter to tell you about surrendering your driving licence if they suspect epilepsy. The don't really understand the impact of what it means do give up driving.

Above all obviously be safe, but do not surrender your driving licence until you are absolutely sure and if you are worried stop driving until you have all the facts.

I hope that helps. Its tough having to give up your licence and I wish I knew the above before I surrendered mine.

Good luck.

pleyland profile image
pleyland in reply to BettyS

Betty, Thank you so much! Thats the best bit of advice/information I've found on the subject.

Really appreciated.

Paul

BettyS profile image
BettyS in reply to pleyland

I am glad it helped Paul. I will keep my fingers crossed for you.

cat3 profile image
cat3

Paul......I've just written a long reply which has just whooshed off into cyberspace..........infuriating ! I'll try again.

I was lucky enough to be driving again after three months of being discharged from hospital. I had notified DVLA of my SAH whilst still in hospital and they had sent an acknowledgement, but at no time requested a surrender of my licence. At my first recall appointment three months later my consultant/surgeon told me I was OK to drive and he would confirm this in writing if necessary. When I phoned DVLA later that day they thanked me for letting them know and wished me well. When I asked was that all I needed to do they told me it was between me and my consultant whether I was fit to resume driving.

I'm told I was unusually fortunate and that, for most people, it's a very different story. I hear of people surrendering their licences and having to undergo assessments and long periods of not driving. It seems there are different rules for different areas, which I find pretty weird for something so fundamental. I'm in Manchester/Cheshire.

If you haven't surrendered your licence I would avoid doing so too easily as I imagine the re-issuing would slow things down further.

All I can suggest is that if your consultant considers you fit to drive...........and you feel safe and competent........ you might ask him to confirm it in writing. Maybe this could cut through some of the red tape. If you can't contact him directly you could pass a message through his secretary or the specialist nurse.

Best wishes, xx

Danslatete profile image
Danslatete

I know how frustrating It is to lose your driving license when you live in the sticks, I lost mine for a long time, maybe 3 years. I'm not great at time so not certain. It took me 3 attempts to get my licence back and I have had accidents since and writtEn off 2 cars. One slidin on ice, one when someone ran into the Sid o my car at a roundabout.

Insurance costs did go up after gettin my licence back.

B_S_A profile image
B_S_A

Do your seizures knock you out?

I have full on tonic-clonic seizures (knocked out, shaking around), so even after a year without them, I think I'm still going to feel uneasy about doing it.

pleyland profile image
pleyland

Really sorry to hear that. No my ones are just a faintly distant feeling combined with a strange smell I cant quite recognise.

SASSYIAM profile image
SASSYIAM

HI YOU MUST BE QUITE BEWILDERED NAY PEEED OFF.I FIRST STARTED WITH WHATS CALLED INFREQUENT IDIOPATHIC EPILEPTIC PHENOMENA IN 2007.THEY CHANGED ME TO A NEURO CLOSER TO HOME.I KINDA KNEW ANYWAY AS I WAS A FULLY QUALIFIED PATHOLOGIST/GP TRAINED.IT WAS A REAL RELIEF TO HAVE SOMEONE AT LEAST TO TALK TO WHO DID NOT TREAT ME LIKE AN IMBACILE.WE GOT ON ONCE I HAD TOLD HIM I THE CAREER I USED TO BE IN AND RATIONALED THAT IT WOULD PROBABLY BE BEST IF HE PUT ME ON A TRIAL OF CARBAMAZAPINE.BUT I HAD TO STOP DRIVING-BIG BUMMER.ANY WHOOO DESPITE BEING TOLD HE WOULD WRITE TO SEE ME IN SIX MONTHS,ON A ROUTINE PRESCRIPTION CHECK A GP AT MY SURGERY POINTED OUT HER HORROR THAT I NEVER SAW HIM AGAIN.UPSHOT I HAVE NOT DRIVEN SINCE HE TOLD ME NOT TO FOR FEAR THAT AN EPISODE COULD HAPPEN ANYWHERE ANY TIME?? THANKFULLY 6 YEARS LATER AND NO EPS SHE MANAGED TO GET ME IN TO SEE HIM.I AM STILL TAKING THE CMP BUT TWICE A DAY AND YOU CANT DRIVE WHEN ON THIS DRUG ANYWAY.PERSONALLY I WOULD NOT WANT TO DRIVE FOR CHANCE I COULD LAPSE CONCENTRATION AND POSSIBLY TAKE OUT A YOUNG FAMILY IN ONE FOUL SWOOP.I TOO LIVE WAY OUT IN THE STICKS BUT HEY IT'S SURPRISING JUST HOW YOU ADAPT.I WOULD NOT WANT TO DRIVE NOWADAYS.THE SHOCKING DRIVING YOU WITNESS AS A PASSENGER IT CHILLS ME TO THE BONE.HOPE THIS HELPS IN SOME SMALL WAY TO EASE YOUR CONCIENCE/MIND??? HAPPY FESTIVE SEASON AND TAKE CARE ON THOSE ROADS WHETHER A DRIVER OR PASSENGER.X

pleyland profile image
pleyland in reply to SASSYIAM

Thanks Sasyiam

The thing is, I really do feel safe to drive and would stop if I felt at all unsafe. I have had one of these episodes once whilst driving and pulled over only because I thought it could be a sign of a second stroke.

Quite agree about idiot drivers everywhere.

Take care and thanks again.

SASSYIAM profile image
SASSYIAM in reply to pleyland

BRILLIANT TO HEAR.GOOD LUCK , TAKE CARE AND ALWAYS REMEMBER TO PUT U AS PRIORITY AND TRY TO GET SOME YOU SPACE .I CONSTANTLY STRIVE 4 THIS N AS A HECTIC MUM OF 2 AM STILL SEARCHING FOR DA TIME 2 CALL BREATHING SPACE.HEY HO ME N ZILLIONS OF OTHERS.EZZZY TO SAY I GUESS !? IS IT JUST ME OR DO YOU N ANY ONE ELSE FEEL LIKE ME? I FEEL LIKE A SMALL DOT ON AN EVER REVOLVING PLANET!? SOME DAYS I WISH I COULD APPLY THE BRAKES, TO PAUSE THE WORLD FROM TURNING??? BEST WISHES.

pleyland profile image
pleyland in reply to SASSYIAM

I feel like applying the brakes every day. Going to learn how to meditate in the new year. I'll post my thoughts or hopefully lack of them. Take care..

Yes! I had a grand mal seizure in 1999 (just 1) Luckily I was at work when I lost consciousness, If I'd been driving I could have killed someone, even myself. My licence was taken away & sadly has not been returned. The first feeling was pure panic - how am I going to manage to do anything even the shopping as I live too far from the shops to carry it. Once the panic had subsided & I was thinking more clearly I realised the the internet was the answer to my problems. I've done all my shopping via the internet for years, it's wonderful for food shopping & there are very few things you can't get on the net. The only slight problems are doctor's appointments & banking. Even the vet comes out to me. I've found that if you are 'transport less' people are very accomodating. The doctor will come out, phone banking takes care of that, I've even posted cheques to the bank to pay in using a quick deposit envelope (I'm with Natwest.) You do get used to it & become very resourceful, it really isn't the end of the world although it's natural to feel like that at the moment I know I did. There is a bus service I can use if I need to but it's a bit dodgy. My local taxi firm give me good rates as the understand the situation. I really hope you can adjust to it. you will learn to cope.

Good lock.

First attempt wouldn't send to here we go again grrrr! I had a grand mal seizure in 1999 following ny brain haemorrhage, luckily I was at work & got carted off to hospital from there. If I'd been driving I could have killed someone, even myself. Lost my licence & sadly haven't got it back as I haven't been fit free since. I would be absolutely terrified to drive now, it's all so manic & there are too many 'got to get there first' maniacs on the road.

The first feeling was pure panic, how am I going to do anything, get to work etc even do the shopping. I live in a village too far from the shops to carry anything. When the panic subsided & I was thinking more clearly I realised tha the internet was the answer. I have done all my shopping there for years, it's brilliant for food shopping & I get everything from microwaves to cat baskets.

The only problem I had at the beginning was things like visits to the doctor,vet, bank etc. Once people know why I can't get to them they are very accomodating and come to me, even the vet. & the doc. I do my banking on the phohone & have even posted cheques to the bank in quick deposit envelopes & they have paid them in like that..

You do get used to it & become very resourceful. It's not the end of the world all though it's natural think it is at first, I know I did. I have a somewhat unreliable bus service and my local taxi firm give me good rates as they know the situation. I have to get lifts to the hospital to see the neuro but that's about it. Don't worry you will learn to cope.

Good luck

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