Hypo Fits

[Jemma85]

Hey, I wrote this small essay on the introductions strand when I joined this week, think I might have posted it in the wrong place!

I have been very lucky with my control and thought I was fine with a very good Hba1c of 6.4 in the summer. However out of the blue I had a fit in my sleep, only noticed because I was sharing a room with my sister at the time. When I came round I was completely unaware of what was going on, I felt very confused but did not feel 'low'. An ambulance had been called whilst I was fitting and when they arrived my blood sugar was very low so they pumped me full of sugar (way way too much!!) and then let me out of the ambulance with instructions to go to my doctor in the morning.

Before I could get to see my diabetic doctor I had another fit 3 days later whereby I walked downstairs and collapsed on the floor and then had a fit- I have absolutely no recollection of even getting out of bed! I woke up on the hard conservatory floor! This time my blood was tested immediately after the fit and again I was low. I was taken into A+E by the ambulance this time where they did many tests but everything was normal.

I got to see my Diabetic Doc the next day and he thought they did sound like hypos but he was going to do epilepsy tests also. I had a MRI scan and then an EEG monitoring, both came back completely clear. My doctor said that my control had been running too low and my low symptoms had turned themselves off whilst I was asleep. I was just wondering if anybody else has had this problem? I took to very stringent testing before bedtime to make sure I was at least 8 before could sleep. I had heard that the glargine I was on, the absoption of it could vary by 30% during the day and I thought that this is what must be happening whilst I sleep.My doctor had now cut out 30 units of my daily dosage. I had one more fit exactly a month after my first one, I had slept in late on a Sunday but was plenty high enough before I had gone to bed. Again I was taken to hospital and I was low again. I was put on a carb counting course which was so useful, I can't believe hwo much insulin I used to take without need!

I then asked to have a go on Levemir as its absorption was a lot more level, I have been on this twice daily now and am so much more stable! No fits and I have regained my sleep hypo symptoms, as I was woken up by one the other day- I was so pleased!! I am wary that had I not known about Levemir and my doc being quite wary of putting me on it I might still be struggling on with Glargine which after 4 or 5 years had chosen to not agree with me!

Sorry for the very long nature of this post, just wondered if anybody else had experienced a similar situation? I am having an absolute nightmare with the DVLA at the minute trying to get my license back!!
Jemma

 

[mmackay20040]

Hi,

I suffer from exactly the same fits. Worst scenario was one when I went to bed fine and happy only to wake up at 4am in the police station, naked, locked out of my flat with no idea how I got there. Apparantly, I'd walked out of my flat, walked down the street to the police station and asked them to let me into my flat....... Needless to say, it wasn't one of my proudest moments.
I've lived with fits in my sleep for about 5 years now and they are terrifying...mainly as you are totally unaware of anything even happening. I would wake up in a different room, battered and bruised, with badly bitten and swollen tongue. I even had a gash down my neck once from what I can only imagine was catching my neck on the corner of the radiator by my bed. I was finally put onto a pump to try and overcome the fits. This was the case for about 18 months but they have started to re-occur. I don't know what to do about them and nor do my diabetic team. It's horrible and very frightening. I can totally sympathise with you as I know exactly where your coming from.
As for the DVLA, they are aware of my fitting, all my fits are during the night and as such, I can retain my licence on a 3 yearly basis. I'm not sure if you have ever fitted during the day?? All of mine have been while I'm asleep.
You can contact me privately if you want to chat about it or discuss anything? I'm really sorry to hear that your going through the same thing but at the same time, I'm thrilled to find someone to talk to about it!!
Hope to hear from you soon and hope they manage to help you prevent them or if not, help you deal with them.

Marie xxx

 

[Jemma85]

Hi Marie,

I agree- I am sorry that you are having such a hard time but it is refreshign to hear that someone is having the same thing! I must admit that prior to the summer, despite having it for 14 years I was not even aware that diabetes could cause fits so had even convinced myself I had epilepsy!!

I thankfully have only had 3 fits that I am aware of, but on all 3 occasions the feelings of confusion were immense. It took me a good few hours in A & E to piece together what day it was, my sisters 21st had been a few days before and I had real trouble even recalling if it had been her birthday yet. You sound like you have been very confused aswell, I now live with a friend but was thankful to be living with my family when these fits occurred to bring me round!

Are your hypo symptoms in the day still prominent? Mine have never gone in the day so thankfully no fits in the day. Now im on levemir the dips in the night I was suffering from seem to have completely gone. Have you tried to change the type of insulin at all? Did you get your sleep symptoms back when you were on the pump?

Good to hear about your licence, DVLA are just soo slow and I get a different story on the progress everytime I ring up, very very frustrating!!

I am suprised at how little has been written about the occurence of fits with diabetes! Also even my diab doctor seemed to be a little confused on the issue which was a bit worrying.

Take care,
Jemmax

 

[Sweet3x]

I had this once. Fortunately, my boyf was with me at the time. He called the ambulance and I was sent for a scan to rule out anything other than low blood sugar. I think it's just one of those things Only happened the once, as far as I know, though

 

[KimSuzanne]

I've had fits since the age of 7 years old I lose about half an hour before and after the fit, my nurses and doctors were always confused by my fits and I was never given warning about them. Mine I'm afraid have become like yours and I've been told its the lantus I take seeing the octor this week about changing it. I've never heard anyone else mention fits before its nice to know I'm not as unique as I thought I was

 

[christaylor8]

Hi everyone, you have no idea how relieved I am to find you all! I have had diabetes for 10 years now and have in the last couple of weeks been having night fits. My fella is at his wits end and can't remember the last time he had a good night sleep. I of course wake up feeling fine and don't know what all the fuss is about. Quite worrying the wandering sleepers though. I am on lantis and have just got off the phone to my doctor to get in and discuss this. I never have a problem during the day and have been taking less and less humulog and lantis which is not helping at all. I seem to be lucky with my reaction thus far and best of luck to everyone else to get this sorted. Should I get any revelations on Wednesday I will keep you posted!!!

 

[farmerfudge]

Does anyone actually know what's happening here with these fits? Is it because it's a hypo that's going untreated because you're aspleep and is what might happen during the day if you didn't address the hypo?

 

[KimSuzanne]

Personally I don't know whats been causing the night time problems although my GP (also diabetes GP) said that Lantus had been shown to work longer than 24hrs so she thought I might be getting a double dose. However this doesn't happen every night for me its around every 3 weeks so the doctor also said it could be the insulin doesn't agree with my hormone levels.
Summary no-one has any idea! Its very frustrating - I live in a household that lives in anticipation of me coming in the room singing "We wish you a merry christmas " or falling asleep on the stairs and in the hallway! Surprisingly comfortable with the duvet and pillows!

 

[farmerfudge]

KimSuzanne,

I notice you've been T1 for 18 years, have you found these sort of things get worse over the years?
Singing "we wish you a merry christmas" aside

 

[KimSuzanne]

Hi Farmer

I'm 'complicated' or 'unique' as my mother says - had my pancreas removed at 16 years old due to chronic pancreatitis and numerous episodes of DKA from 11 - 16. But to be honest its settled since then the Hba1c is down (not as much as I'd like) but its better the last 6 months have just been an absolute nightmare - constantly tired, the morning wierd episodes and generally felling pretty awful all the time.
My diet is good, not changed it recently and I'm active - I work 12 hour days, currently back in education part time!
My diabetes just seems to be sticking bot fingers up at me just lately!

 

[farmerfudge]

I'm sorry to hear of your situation. You've almost been handed diabetes through the removal of your pancreas then? Obviously far from the norm. I was wondering if there was some cumulative affect at work here due to the number of years you'd had the condition.

 

[Jemma85]

I think it might be what would happen in the day if you left the hypo untreated, I was told that the fit is the brains last ditch attempt at getting attention to the problem? ie by alerting others I guess. I have also been told it is a result of the body hauling sugar from your liver to stop the hypo.

KimSuzanne, its interesting what you say about the insulin having different reactions with hormone levels, 2 of mine happened exactly a month apart. I don't seem to be having any variation according to the time on Levemir now.

I do think there could do with being a bit more research on these fits and the effects the different types of insulin have on their occurence. It is nice to know there are others having very similar situations!