First Seizure

[saundes3]

Hi,

I'm a type 1 diabetic male for the past 20 years, I'm now 36. Last Thursday I had a seizure, first time ever. I woke at 6am to find 3 paramedics at the end of my bed giving me oxygen. They'd given me glucagon although before doing so had tested my blood sugar and it was 3.7. I've been much lower before and never experienced anything like this. I'd bitten through my tongue and the pillow was covered in blood. I'd screamed out and my wife saw my eyes flickering and my mouth to one side. When I came around I couldn't believe it was January, and I couldn't remember my job, etc. I apparently kept staring blankly at everybody. My CT scan and blood tests were normal. I've been referred to the epilepsy centre and I've booked myself in to see a diabetic consultant. I'm unsure of the cause and scared it will happen again. If anyone has had a similiar experience or has any info that may help please comment.

Scott

 

[abs]

Can't offer any help just posting to say don't panic hopefully your healthcare team can give you the answers.

 

[Totto]

My husband had two seizures a year after his stroke and is since on Carbamazapine. He was very confused afterwards and very tired. This is five years ago and he hasn't had any more seizures. In his case they said he may not need carbamazapine forever, as the brain can heal.

See that you get things tested before they put on anti-epilepsy meds: Thyroid test, not only TSH but also fT3 and fT4, folate, B12 and vitamin D.

 

[Giverny]

I have also had a few seizures due to hypoglycemia, and I don't even have diabetes (my worst seizure was due to the fact that I hadn't eaten for a long time, had been awake for over 36 hours and had been on my feet for 12 hours). It's incredibly frightening to feel that you are so out of control. When it first happened to me, I fell and dislocated my shoulder. Obviously I can't remember this myself, but my friends said I was making choking noises.

If you're frightened of future episodes of hypoglycemia, it might be worth asking your doctor if you can have some more test strips (even if just for peace of mind to prevent any related anxiety) just so you can test more often and prevent this from happening again. It's probably also worth keeping some glucotabs or something similar on you at all times.

 

[Miss90]

Sorry to hear this.

I had a seizure just before christmas in my sleep, my first one ever. I came round to 3 paramedics and oxygen around me also. I had to be given 2 glucose injections to bring me round and I was covered in sweat! It was horrible waking up and hearing what had happened and it now takes me hours to fall asleep as I am so paranoid it will happen again!

Hope you are ok

 

[noblehead]

Can't offer any help just posting to say don't panic hopefully your healthcare team can give you the answers.

Likewise, hope they get you sorted Scott.

 

[saundes3]

Thanks for all the replies so far. To be honest I'm very scared, and also worried about falling asleep. I'm keeping my sugars deliberately higher than usual, for the timebeing at least. My wife and 4 year old daughter also saw the seizure, it was not a nice experience. The weirdest thing ever to wake up and see 3 paramedics in my bedroom, unless it's happened to you it's difficult to define how spooky that felt. I couldn't remember who I was, my job when asked, and even wouldn't believe it was January for some reason - kept saying noooo it can't be!

Scott

 

[wizardo]

Thanks for all the replies so far. To be honest I'm very scared, and also worried about falling asleep. I'm keeping my sugars deliberately higher than usual, for the timebeing at least. My wife and 4 year old daughter also saw the seizure, it was not a nice experience. The weirdest thing ever to wake up and see 3 paramedics in my bedroom, unless it's happened to you it's difficult to define how spooky that felt. I couldn't remember who I was, my job when asked, and even wouldn't believe it was January for some reason - kept saying noooo it can't be!

Scott

I had a few seizures some years ago. Terrifying for the loved ones and mighty depressing for you. After a couple of these episodes, the loved ones became used to the routine and became less frightenend. I was put on Lamictal a modern anti-convulscent drug. Two pills every morning. Haven't had a seizure for years. I've even tested my threshold with lots of alcohol and deprived sleep. The tablets have really sorted me and I no longer even think about seizures whereas before it was always at the back of my mind.You can get it fixed. The downside is that you will have to give up your driving licence for a year when you are seizure free. Now I'm tackling the diabetes and have made great progress with a no carbs and loads of exercise regime and it works. Believe me there is plenty of light at the end of the tunnel. You can fix these things, just stick at it.

 

[SamJB]

Yeah, just after diagnosis I had two bad hypos that ended up me fitting in the middle of town. I didn't have a clue what I was doing with my diabetes. In one if the fits I broke my jaw, cracked two ribs and split my head because I passed out on the concrete steps of a train station. I woke up and told the paramedics my name was "Dave from Ponty" and then said I was Father Christmas!

It did mess me up for a while, I had anxiety attacks for a few years after. I became petrified of hypos and subsequently had rubbish control of my sugar levels for a few years.

 

[SPARKLE4]

Thanks for all the replies so far. To be honest I'm very scared, and also worried about falling asleep. I'm keeping my sugars deliberately higher than usual, for the timebeing at least. My wife and 4 year old daughter also saw the seizure, it was not a nice experience. The weirdest thing ever to wake up and see 3 paramedics in my bedroom, unless it's happened to you it's difficult to define how spooky that felt. I couldn't remember who I was, my job when asked, and even wouldn't believe it was January for some reason - kept saying noooo it can't be!

Scott

I have had similar experiences and understand how you feel, I think its one of the most scary and unnerving things that can happen to someone. I was 3mths pregnant when I had my first seizure and when I woke up I did not where I was and just had vague memory of being pregnant- then things seem to slowly come back to you and make some sense after a while. I also started to keep my glucose levels a little higher for fear of it happening again and then you don't feel so great either! My family are great but I think that unless you experience one of these its very difficult to understand just how horrible and extremely frightening the whole experience can be. Better control and vigilant testing seems the only way to go.X Take care of yourself and there is a light at the end of the tunnel.

 

[saundes3]

Thanks everyone, keep em coming, glad to know I'm not alone.


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[Mariemccann]

Hi,

I'm a type 1 diabetic male for the past 20 years, I'm now 36. Last Thursday I had a seizure, first time ever. I woke at 6am to find 3 paramedics at the end of my bed giving me oxygen. They'd given me glucagon although before doing so had tested my blood sugar and it was 3.7. I've been much lower before and never experienced anything like this. I'd bitten through my tongue and the pillow was covered in blood. I'd screamed out and my wife saw my eyes flickering and my mouth to one side. When I came around I couldn't believe it was January, and I couldn't remember my job, etc. I apparently kept staring blankly at everybody. My CT scan and blood tests were normal. I've been referred to the epilepsy centre and I've booked myself in to see a diabetic consultant. I'm unsure of the cause and scared it will happen again. If anyone has had a similiar experience or has any info that may help please comment.

Scott

Scott I in the same boat, I had my first major seizure at work last Friday and woke up to find 20 people around me and apparently I had collapsed convulsing on the floor (my blood sugars were 1.3 eek) yet before my seizure it was 15.1 (scared me to bits) and apparently I my left side of my face dropped I was foaming at the mouth, I weed myself and I didn't recognise anyone. I had bitten my tongue hard it is still bruised now! was taken to Hospital and kept there for 4 days and my insulin has been reduced from 8 to 4 on my rapid pen 3 times a day and up to now feel fine but god I am petrified if that happens again SCARED THE LIFE OUT OF ME. take care

 

[novorapidboi26]

I have no experience of seizures in my 16 years, but all your stories sound genuinely terrifying.........

I imagine it would change you for a while........

 

[Lmm19]

Hi, I have been on Tegretol (carbamazapine), for the past 10 years due to blackouts/seizures. My neurologist sent me for tests,. BG always in range when I had them.
Over the years, the carbamazapine have been stepped up from 200mg to 400mg and now I have not had any blackouts in over 2 years. One of my worst blackouts was when I was drying my hair. I felt an 'aura', then blacked out. I woke to find my toes getting burnt by the hairdryer that I had dropped. Luckily I was sitting at the time. I must have been out for about 5 minutes.

 

[donnellysdogs]

Scott I in the same boat, I had my first major seizure at work last Friday and woke up to find 20 people around me and apparently I had collapsed convulsing on the floor (my blood sugars were 1.3 eek) yet before my seizure it was 15.1 (scared me to bits) and apparently I my left side of my face dropped I was foaming at the mouth, I weed myself and I didn't recognise anyone. I had bitten my tongue hard it is still bruised now! was taken to Hospital and kept there for 4 days and my insulin has been reduced from 8 to 4 on my rapid pen 3 times a day and up to now feel fine but god I am petrified if that happens again SCARED THE LIFE OUT OF ME. take care

Just reading this..first iff, very sorry to read and hope you are feeling better.
However do you rely upon your hospital to change your doses? Are you happy carb counting?
Are you aware of the actual reasons for the severe hypo? This is important.
Did your work colleagues do correct actions for a hypo? Having 20 people around you on coming round doesn't sound good... And really doesn't sound as uf tgey were aware ir confident of helping correctly. This may be something that you may need to speak to first aiders and management about.

 

[Spiker]

Hypoglycemic coma is definitely no joke and may be the 2nd leading cause of death in Type 1 diabetics. It's very scary and serious.

 

[Mariemccann]

Hypoglycemic coma is definitely no joke and may be the 2nd leading cause of death in Type 1 diabetics. It's very scary and serious.

I took it has no joke it scared me and I know it was serious eek !

 

[mazza31]

Hi Scott had my first seizure last Sunday while shopping in Aldi felt hot and shaky like a hypo so had a Jaffa cake to try and get my sugars up but then I remember everything around me going fast forward and flashes of darkness I woke up on Aldi checkout floor and paramedics sitting with me cut my head badly bruised elbow and awaiting appt for first Fit clinic petrified have had to give up my driving licence and selling my car now as well had I made it out of Aldi I wld have been driving and that doesn't bear thinking about x

 

[Nicola M]

Seizures no matter what kind can be very scary. I was diagnosed with epilepsy in around 2010. Thankfully my seizures have all happened at home and I was in a safe place but it's always disorientating as I can't remember anything before/after the seizure. Been on Tegretol (carbamazapine) for 5 years now. Seizure free for 3 and a half years!

I've had one partial blackout from diabetes once, I had to be given the orange pen injection for that and it wiped me out for the day. I just remember coming round afterwards and being totally confused and wondering what was happening. Thankfully it's not happened since!