[Closed] Seizure/epilepsy

Hi BB, sorry to hear of your stressful time, probably much worse being around Christmas.
I have Temporal Lobe Epilepsy (TLE) which manifested itself as increasing episodes of deja vu, then a night time seizure which frightened the life out of me, my partner and family. I went through what you're going through now, scans, waiting, patronising neurologists, good neurologists, wrong medication, right medication, loosing driving licence, getting it back again.....anyhow, there was nothing majorly wrong with me, just latent damage from childhood fevers, and i'm now on a low dose of carbamazapine, seizure free for 12 years or so. It does take a while for the wheels of the health service to turn, and making decisions on cause/effect/suitable treatment cant really be rushed too much - they don't even know how some drugs work, and matching meds to symptoms is a bit hit or miss. They will try to find a drug or combination of drugs which will stabilise the problem, and reduce or hopefully stop seizures. What they prescribe will be based on a database of previous success with your symptoms/ecg/scan info.
There is a probably good chance that you will be medicated but seizure free. You'll have to stay on the mads for life, though they may have to move meds in the future because some drugs can have long term impacts on organs like the liver.
Try to find a local support group - they usually hang about outpatients- they help if your feeling a bit isolated. There should also be an epilepsy nurse attached to the healthcare trust, they are far more human and approachable than the neurologists (my experience - other experiences may vary!). GP is not much use after you've been referred on, there may be a different gp in your practice with a specialism? worth checking.
Anyhow, hope things turn out well, try to talk to friends/family about how you feel as much as you can, keep doing stuff. You can PM me if you need to unload to someone.

Had a seizure back in March, which absolutely threw life upside down for me as i drove for a living. After a period of sick leave i had to resign my position and only recently started settling into a new line of employment on much reduced pay - i was amazed how many job vacancies specify a driving licence! Anyway, after a minimum of tests with nothing abnormal found the NHS has released me from their care wrt this episode so i can now get travel insurance. This is important for me as basically i work to pay for European riding trips which had to be cancelled for this year (was planning an alpine roadtrip this summer which had to be binned...)
It's a pain that a fairly simple electrical brain overload results in such upheaval, but Hey Ho...

2 years ago, my wife had a seizure in the middle of the night. first one ever without warning. she swallowed her tongue. i paniced and put my fingers in her mouth to get her breathing again. it worked but she did bite my finger badly.
she spent the week in hospital, and had 2 more seizures whilst in there. because she had 3 in total she is now classed as having epilepsy.
she lost her driving licence for a year.
had scans and all the head/brain checks.all came back clear. she takes 3 tablets a day, and touch wood, has be fine since.
she was dizzy for a few month after so stayed off the bike, but we have toured 3 times since she was diagnosed.

seeing someone have a seizure is truly terrifying.

good luck with your outcome

I know of 2 people at work, in their 40s, who had a single episode. They were told it was due to a 'virus' and a few years on neither have had a recurrance (dont know if they are on meds).
My eldest had epilepsy when he was younger, full tonic/clonic seizures and more often at night. Terrifying at first but you learn how to cope. It still brings a tear to my eye remembering his first one aged 3 as I read him his bedtime story ...... anyway,he was on meds for a number of years, then reduced his dose as he was seizure free for a few years. Once we had 2 years of no seizures they took him off his meds totally and thank God so far so good for about 6 years now (we still keep a bottle of midazolam buccal in the house just in case but have stopped carrying it everywhere with us). He has become a normal stroppy football playing teen.
Talk to the experts and see what they say (our GP, consultant and epilepsy nurse were great). All the best getting through it.

Forgot to mention we have no locks on our toilets in case he had a seizure in one and we need get to him. Raises a few eyebrows with visitors.......

brother has epilepsy, caused by a brain tumour (meningioma, a benign sort that grows on the brain lining) in his case pressing on his frontal lobes (more on that later) the pressure of which eventually caused a massive tonic-clonic and brain surgery to remove it. This happened 8 years ago and he continues to suffer long term effects

He now suffers everything from mild absences (pretty common so no real issues) , to panic attacks, confusion (less common, sometimes quite scary, but recognisable so straightforward to deal with), and full on repeated seizures (rare thankfully, often at night) He's on a mix of tabs, sodium valporate, oxcarbezepine, Clobazam, Adcal, and and bucket of supplements.

He continues to insist on living alone (he's a stubborn bugger), but work, travel (anything that involves stress/dead-lines, or timetables) are difficult to impossible depending on where he is on his cycle (lunar based, don't laugh we've tracked it!) driving is obviously impossible. Showering/bathing, cooking can be an issue. Some artificial lighting will have effects, as can crowds, and the cinema. It's confusing, difficult, and can be miserable and depressing (see clobazam).

RE frontal lobes: This is where your personality and control centres are in your brain. He suffers from anger management issues, as he often can't (depending on whether he's pre or post seizure) easily determine his own level of anger/lack of control. This can cause issues for both him, me, his friends, random people he meets in the street, the cops, the ambulance crews that sometimes have to collect him from the street where he's collapsed...

It does take a while for the wheels of the health service to turn

I wouldn't be too reliant on the NHS, they're not great on this. Various specialist (oncology, neurology) may, or may not speak to each other depending on whether they care about each other's specialism, or whether they in fact, like each other particularly much. (we had to change just because of that very issue!)

Hate to paint such a bleak picture, but it's one side of epilepsy that you should be aware of.

Edit: forgot to say, Despite the fact that he can be awkward, miserable, and stroppy, I continue to be ever so proud, and full admiration of the way he keeps on with mostly high spirits and an attitude to life that astonishes me in it's positivity

It's a multitude of conditions, with a multitude of causes and types, given a single name. It could be a single episode or a weekly/daily thing, and the severity of seizures can vary hugely.

The good news is that in a lot of cases, it can be controlled well, although it's clearly massively disruptive right now.

On October 20th 2016, I suffered a seizure, luckily, yes, luckily, I was in the local surgery and was attended to within 10 seconds. I'd felt odd all that day and had a feeling of impending doom, I'd been suffering from a lot of stress and pressure, with having issues with my ex spending money we didn't have and the savings I had, losing my dog, my daughter being bullied and having to move schools, the next door neighbour making threats to kill, a pipe bursting in the yard, the local water authority refused to fix it as the previous house owner had had a repair done already, it took 9 weeks to sort. There was a few other things but I've forgotten what they were.
However, this was what was diagnosed as the reason, not an epileptic episode, but "dissociative", meaning it was not an "electrical fault" in the brain. The following day, I had another, but this one, was not as serious, but the neurolgist did say, if I had another within 4 weeks, I may not survive it.
The worst thing for me, was the loss of memory and still is, I was told I might only get about 10% of my memory back and this is proving to be true, so far. I wasn't given any medication, but my licence was supended to 6 months, it was actually 9 months by the time it was returned with no restrictions.
In the last 2 years, I've removed the negative things from my life that was causing me the issues, I now live alone, my finances are safe and secure, my dealings with my ex are limited and to ensure my last financial concern is guaranteed, I severed the joint tenancy on the house and made a will, to stop my ex from benefitting from me any further.
I'm very happy with my life now, got back to cycling and most of my hobbies, I've decided to not return to motorcycling, but I have many other things I enjoy, so it's only one thing I'm missing out on, but had enjoyed it for many years.
That's how things were for me and I've come out of the other side, fingers crossed you have a very successful recovery.

Alan.

Newly diagnosed booklet

Have a read, write down your questions for the doctor and ask to see the epilepsy nurse. Good luck.

Not sure what if any, the link is between the kidney function and the seizures

Not sure there is one, in the way you may be thinking

Sometimes (fairly rarely) a CT scan can indirectly affect kidneys due to the contrast agents they use to improve the images. If the timing fits, it MIGHT have been that - of course, there are other potential causes and this may not be what's gone on with you at all and the best thing would be to ask them (it might mean they manage you slightly differently if it was this and you ever need imaging in future). Do you KNOW that you had good renal function prior to this event?
[I suppose it's just about possible that your kidney function went weird first and that the seizure was due to, say, electrolyte imbalance or accumulation of "metabolic waste" but I reckon that's a long, long shot if you're normally fit & well and they'd likely have spotted a gross imbalance and told you about it before now]

Hope all goes well with the MRI and the following consultations. As I bet others have said, write down a list of questions in advance

IAApharmacist (number available on request), not a doc (and I don't work in neurology)

Sympathies to you and good luck with all the tests, investigations - I found the EEG the most surreal,after numerous MRI and CT scans.

I suddenly began to have seizures at 24 with no previous history. Diagnosis took a while but the most frustrating thing over time has been taking 2/3 years of trying different combinations of drugs to find one that suppressed my seizures but didn't make me feel shit or have other side effects.

I also drove for my job which sucked having to leave it for a much lower paid local job but over time have accepted this. Become a master with buses and trains as well of course cycling nearly everywhere. As mentioned above I will probably taking meds for life but there's a possibility that I can maybe get licence back soonish.

9 years on, things are nicely under control and apart from driving and the odd bit of memory loss I'm living a normal life.

Thanks for all of the replies, the link to the booklet evh22 was really useful. I’d kinda drifted around the website previously but missed this. Sorry to hear about your experiences Prof and Tom, hopefully as I am not dependent on a car at all for work, this should not be an issue. However, I am in charge of large numbers of students at various times which is something that does worry me a little, particularly if there is a period of acclimatisation/adjustment with medication (and associated higher risk of seizures). I should be able to discuss this with the experts though. The phenytoin I am on at the moment seems fine - no obvious side effects (I am carrying more weight than I was, which maybe the drugs but then i’ve been pretty inactive for about 5 weeks and been eating mainly chocolates).
Not had an EEG - my gp booked one, but the neurologist cancelled it.
My kidney function was poor when I was admitted - blood tests showed various metrics out of range. I also had urinary tract infections in the last couple of years as well. I discussed this with the neurologist the day after the seizures, but I have no memory of the discussion, just the minutes from the meeting. I’ll certainly discuss this with her again.
No locks on our bathroom doors, but my wife works away part of the week, which means I have responsibility for the kids, which is the other area of worry for me. They are 15 and 12 so not babes by any means, but I am still responsible.
Anyway, thanks for the replies and good wishes. Have a good 2019 (and beyond) all.
BB

Glad you found the booklet helpful.

Btw you can get a free bus pass if you can’t drive due to epilepsy. And few prescriptions.

seeing someone have a seizure is truly terrifying.

You’re not wrong! My g/f has the occasional microsleep or petit mal, and I did research what happens during a grand mal, but when she had one in front of me it scared me shitless. I called an ambulance and she was taken into Bath Royal United where they gave her a scan, because of her medical history - she had a sub-arachnoid haemorrhage when she was living in Eire, ten years ago.
She checked out fine, and I got a scolding because she knows how to cope, and she had told me to just make sure she was comfortable and safe, that advice went out the window in the face of it actually happening.
She’s now over a year since, and could drive, should she wish to, but she doesn’t much enjoy driving on English roads.