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1st seizure

S

Stu9876

Member
Messages
19
Hi,

This is my 1st post here...

T1 for 27 years. Generally OK, well controlled, no drama. Until Friday that is.

My wife was awoken to me having a seizure at 2am. I have no memory of it at all, or anything for the next 12 hours. Pretty sure I'd taken my lantus twice. I have always had good hypo awareness, and even had a low yesterday which was like every other that I've had. The worst bit is I've just found out I can't drive now.

This will have a huge impact on my life and feels so unfair. Has anyone any experience on this and is there any chance of arguing my case?

I'm still sore, both physically and emotionally and struggling to process it tbh.

Thanks

Stu
 
Hello and welcome to the forum i wonder if this was caused by the so called lantus low mentioned on the forum many times ... sounds very scary ...
 
Thanks for the welcome.

Lantus low? What's that?

I've been on it for a good 15 years and it's been fine tbh. Well, until I injected myself with 96 units in one evening
 
What a horrible and scary experience, I'm sorry!
Stu9876 said:
My wife was awoken to me having a seizure at 2am. I have no memory of it at all, or anything for the next 12 hours. Pretty sure I'd taken my lantus twice.
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Do you remember at what time you took your Lantus? A Lantus low can hit very fast.
 
I had a seizure last time I had an ambulance inducing hypo (own fault, we had guests and I didn't eat enough breakfast). I didn't lose my driving license because it was clearly hypo induced, though I was told not to drive for a couple of weeks while my consultant opined.

But I'm in NZ now so don't know what the current rules are in UK.

Stu9876 said:
Lantus low? What's that?
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I've had a couple. I think it may be caused by injecting into a blood vessel? The lantus acts extra fast and sends your bg plummeting. I now split my dose partly because of this experience, though also because it seems to act more consistently when I split it.

Good luck.
 
Stu9876 said:
Lantus low? What's that?
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It can happen if you hit a capillary when injecting, you can hit one without noticing, or it can cause a drop of blood or a bruise appearing after injecting. If some of the Lantus hits the bloodstream it will act as a ridiculously quick acting insulin. It happened to me once and it's the reason I switched to a different long acting.

It's not only Lantus which can do this, it's any insulin Glargine, nowadays there are different varieties of it. There are other long acting insulins too though.

Of course, if you accidentally double dosed, this could easily be the cause of your low as well!
 
Antje77 said:
What a horrible and scary experience, I'm sorry!

Do you remember at what time you took your Lantus? A Lantus low can hit very fast.
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I usually take it around 9pm, so if I took it twice, the second would have been 10/11pm. Pretty much all Friday is a haze.

It's scary not just for me, my wife is strong but this has shook her up
 

Thanks for that tip. I'll try anything to stop this happening ever again.
 

Jeez, you would think you'd heard it all in 3 decades. I had no idea this was a thing, or seizures tbh. I know about comas but I'd never tested lower than 3.6 in my life. A1c was 6.3 last time. My confidence is gone
 
Stu9876 said:
Thanks for that tip. I'll try anything to stop this happening ever again.
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I should stress that I'd be asking for a different basal if that was an option in NZ (it isn't, and I've learnt to trust my lantus again).

And my lantus lows occurred within half an hour of injecting, so if your hypo was in the middle of the night I'd be more inclined to suspect a double dose?. More importantly, aside from the jumbo packs of glucose tablets, I also self fund a dexcom and that warns me both when my bg starts to go low and of very fast bg falls... (My confidence was gone after my seizure, but has been restored to me by my dexcom).
 
Antje77 said:
You might like to look into a Timesulin cap. It's a cap for your pen which shows the last time you took it off, very useful to make sure you already took your insulin or not!
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I'll look into that, it is something I've heard of. Being fast tracked for a libre too. Was kinda meandering towards one anyway. Hoping I'll get my confidence back. My last a1c was 6.3 and been 10+ all week and feeling like ****
 
After 27 years of you being ok, your experience really worries me too. I live alone. Could this happen with Levemir ..? Is it not only Lantus... ? I would like more info ..
 
michita said:
Could this happen with Levemir ..? Is it not only Lantus... ? I would like more info ..
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It can not happen with Levemir (apart from the double dosing of course, that can happen with any insulin!).
Stu9876 said:
My last a1c was 6.3 and been 10+ all week and feeling like ****
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This sounds like you have something going on anyway, being 10+ is obviously not your normal with a decent hba1c like that.
If you have something brewing your blood glucose can become very unpredictable, might be that this hasn't helped.

If you've been on Lantus for so many years without issue, I'd think it works very well for you, and if it was a double dose it's not because of the particulars of Lantus.
 

They did do an ecg, mri etc, which was fine, but my white blood cell count was quite high. Said something about an infection but there's nothing obvious going on in that respect. I'll add that I'm pretty sure I double dosed, but my memory is haywire!
 
Stu9876 said:
They did do an ecg, mri etc, which was fine, but my white blood cell count was quite high. Said something about an infection but there's nothing obvious going on in that respect. I'll add that I'm pretty sure I double dosed, but my memory is haywire!
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As I understand it, the DVLA take your license for two need assistance hypos during the day (they exclude night time ones). I suspect the issue will be whether your episode is counted as a seizure or you get away with it as hypo induced.
 
EllieM said:
As I understand it, the DVLA take your license for two need assistance hypos during the day (they exclude night time ones). I suspect the issue will be whether your episode is counted as a seizure or you get away with it as hypo induced.
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They logged it as a witnessed seizure. I'm getting more advice tomorrow on how I contact the dvla. It's not abundantly clear how to go about it. I'd like to argue my point that it's a one off. I had stopped seizing by the time the ambulance was here, but it was obvious what had happened.
 

Thank you, and to everyone for the advice.

I'd take provoked seizure at this point. 6 months is doable. Weather will be decent mostly. I live 30 miles from work and hate buses with a passion
 

Hi Stu,

Welcome to:the forum.

I use Lantus too.. probably for 25 years? Glargine brand name change. So longer use since the late 1980s...
it can be flakey. “Lantus twice?” OK? I’m still hypo aware. But have doubted whether I took my dose. (It can be too routine.)
Take mine around 10. But any hypos at 2 or 5? Sound about consistently right if they happen for me..

Ride it out..? SORN your motor. & wait. You may find you could have your privilege to drive back, if no other “events” on the stuff..?
 
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