Younger bro just diagnosed with TLE!
Bit out of the blue…. Bro back in Wales just called to say he spent the night in A&E after blacking out (again) on the sofa, tingly feeling and woke to the sound of his wife calling 999. Docs have diagnosed temporal lobe epilepsy, started on anti epileptic meds and booked in for a MRI and EEG etc. He said the other night he was driving home from work, had an absence driving round a roundabout and realised he was staring at the steering wheel of his car and had no idea how he got to where he was (without crashing the car into something/someone).
Kind of buggers him up for work as he’s a community physiotherapist with the Swansea health service – can’t drive for at least 6 months. Have another friend who has a similar dx but never manages 6 months with no seizure/fit/absence so has never been able to drive. All a bit shite really. Am a bit shocked really as he’s always been the fit/healthy one. Wonder if all the years of football have caused this to happen? No recent head injury / trauma. Man…Posted 1 year ago
Ouch – that’s tough on him
Nothing to add except that at least he didn’t smash himself up in a car crashPosted 1 year ago
i think my BiL had to go 12 months without an episode…..Posted 1 year ago
Hi, I have TLE, first manifested itself in increasing numbers of deja vu events, culminated in a night time seizure while on holiday in a remote cottage on Orkney! woke up not knowing who the family were, where i was etc, spent a day in Kirkwall cottage hospital (nice BTW) before an anxious few weeks awaiting scans to try and work out cause. Turns out it was due to scarring left by infantile convulsive fevers, when I was two or three. I’d had intense deja vu from a young age, and feel certain colours as emotions – all part of the epilepsy, but until I was about 42 I didnt realise and it was not a problem.
Had to stop driving for a year, got depressed, wrong medication etc but resolved after a few attenpts at different drugs. I now take Carbamazepine (tegretol) and have been seizure free for ten years and have my full driving licence back, long term. My employer was fully supportive, my workload/rota was altered to take driving out of the equation. I’ve reduced the dose (on my own initiative, then fessed up to the GP, who agreed it was fine) to a level where I feel i’m not wrecking myself – liver damage is a possibility on one drug for long periods, and carbemazepine mucks about with sleep patterns and dreams a fair bit.
I lead the same life I did before the epilepsy manifested itself, just as active. I’d have to say that IME the medical profession are well meaning around epilepsy, but cannot empathise and I got very frustrated with some of them, consultant neurologists in particular. If your brother doesn’t trust one, get a second opinion, even if its just to put his mind at rest. (they are perfectly competent and work in an field where cause, experience and symptoms vary greatly).
Your brother and his family will find the whole thing unsettling, disturbing and worrying; – there should be a local support group which will be helpful and supportive and accessible – find out about them, and contact the Epilepsy Nurse through the GP or the neurology dept they were helpful and accessible in my case.
Things will settle down, drug therapy is usually effective, although it varies from person to person. T<span style=”font-size: 12.8px;”>here may be triggers that can be identified and avoided. </span><span style=”font-size: 0.8rem;”>There are many causes of TLE, and while you will fear the worst, it is just as likely to be a minor injury from the past or a chemical imbalance, or even stress. </span>
Pass him my good wishes, hope all goes well, if he needs to talk to someone outside the loop, PM me for contact details.
MurrayPosted 1 year ago
Thamks dude. When the consultant was doing his history there were a couple of things that flagged. Cord around neck when born (something I didn’t know, thanks mom) and when he was 18 got sucker punched to the back of the head with a brief loc.
Good thing about anti epilepsy meds is they are mood stabilisers as well and I can understand how his mood might dip as the realisation of his limitations kick in. Will see what the mri and eeg flag up.
Thanks for the advice. I’m sure it will all sort itself out.Posted 1 year ago
Bit of a revival but things still not great. He’s been titrated up on Kepra but it’s not been working. More deja vu and blanks so he’s been signed off from work again, driving ban extended for another 12 months and they are starting him on briveracertam but using clobazam while they stop the kepra and start the new one.
I had read about, and told him about kepra induced rage and told him to look out for symptoms. Well, he got it big time. As well as depression – can’t work, can’t drive, feeling useless and hopeless with some suicidal ideation (no plan or intent at this stage). Basically I’m useless, what’s the point?
Not nice to hear this about my little bro so I had a word with work, chatted to the missus,and booked a flight to UK on Sunday night. His missus knows and I’m going to just turn up out of the blue and knock the door. Flying into Brum on Monday arvo, then my Dad’s picking me up, quick recovery nap at their house then a train down to Swansea for a few days. Hope the shock doesn’t trigger anything for him!Posted 1 year ago
Sorry I can’t offer anything useful – but you sound like a great brother. Hope your visit helps lift him and things improve for you all.Posted 1 year ago
My mate was diagnose with epilepsy a fair few years ago, loads of blackouts along with the associated injuries as she fell.Posted 1 year ago
I don’t know what meds she is on, it took a couple of years to stabilise it I think.
But she is perfectly happy now and hasn’t had an episode for about 3 years afaik.
She’ll never drive again, which she is gutted about as she loved driving, but she’s just happy to be alive and well.
Hopefully your brother can get his meds sorted and carry on with his life x x
Hi Aphex, five months since your first post, it can take a while to get drugs right – fwiw I got worse after I was diagnosed and then spent three months on the wrong drug which gave me paranoid delusions. Not funny for me and not for the family either! Hopefully things will stabilise soon. The other aspect for me was the feeling that I was different, ill or useless – constant trips to hospitals didn’t help. This phase will pass, all being well and life can slowly resume. Best wishes to your brother and his family, good that you can be there for them.Posted 1 year ago
Yeah he’s really down, hopeless, worthless all of that. Little beaut ran a half marathon to today in Swansea for the air ambo.
I’m a community mental health nurse so I know there’s no exact science to getting the right meds and the right dose. Just hits hard when it’s a direct family member, hence the trip home.
Will be say on an Emirates flight at 10pm tonight for 11 hours. 2 hour stop in Dubai, then 8 hours or so to Brum. Was gonna get the train to Wolves where my folks are but my old man’s going to pick me up. Will sleep well then get a train to Swansea next day.I may require a few brandy’s on the plane….Posted 1 year ago
Best of luck to you Aphex – hope it really picks him upPosted 1 year ago
Mission success. Surprised the hell out of him. Tears too.
He’s trying to do so much, as well as trying to be normal. But it’s hard. I feel for him. We went on a walk up pen y fan. Cleared the cobwebs. Even snow on the top. It’s been some years since I’ve seen that.
Hired a car. The auto Skoda I asked for was delayed so ended up with a lovely 220d Merc c class and chauffeured him everywhere. Been a crazy busy week catching up with old friends and seeing my Nan in the nursing home. She remembered me and we walked around holding hands. Both happy and sad.
Now sat in brum airport for my flight to Dubai thrm back to Perth. I’m knackered but my heart is full. Got a message off my bro yesterday. He’d been doing some yoga and mindfulness, so he did listen to my advice.
Now the long flight home……Posted 1 year ago
Well done sir,you are a top bloke/brother.Posted 1 year ago
Hope he goes from strength to strength.
All the best.
Back in Oz now. Foooookin knackered. Will watch an episode of Line of Duty then get me head down. Night all!Posted 1 year ago
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