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Coping with a T1 Parent and Seizure

Discussion in 'Ask A Question' started by ldne97, Apr 4, 2020.

  1. ldne97

    ldne97 Family member · Member

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    Long post - skip to the end if you would like (please read if you can)
    Hello, I’m new to the forum and was hoping to get some advice/comfort/support from anyone who has type 1 or anyone who knows about type 1 and seizures.

    My mum was diagnosed in October of 2018 (at 47 years old) with Type 1/LADA, which the doctors thought was stress induced due to her job. She’s managed it so well over the past 18 months, always organised and planning and prepared with sweets or juice, and during those 18 months has been praised by the clinic for taking to it so well. It’s still been very hard for her but she’s taken it in her stride. I think because of how she’s coped, the family have become a bit complacent with it and have stopped treating it as seriously as we should have.

    Yesterday, mum came into me and said she felt faint and was having a hypo (Libre was saying she was at 3.8). This was after she’d injected and then eaten lunch, and also had sugar due to low levels. This normally happens with her milder hypos so I told her to go lie down straight away and wait for the sugar to kick in. 2 minutes later I heard a loud crash in her room and went in to find her fitting on the floor with her face/nose/mouth spewing blood due to the fall. The blood definitely made it worse than it was but still terrifying for a 22 year old to see her mum like that.

    We think there was a combination of factors that meant her BG didn’t increase fast enough/her reading wasn’t accurate.

    Amidst the panic we phoned an ambulance, injected her with the Glucagon kit we had, and she slowly came around after a lot of wailing and lifelessness.

    When researching online all I see is death death death and negativity and it’s very frightening. I understand how serious the disease is and I do always take it very seriously, but I was wondering if anyone else has experience seizures and can give me a light at the end of the tunnel?

    She keeps on top of it, I have to emphasise how out of character this was as even her hypos are dealt with very swiftly and never get too close to the wire.
     
    • Hug Hug x 7
    #1 ldne97, Apr 4, 2020 at 12:13 PM
    Last edited: Apr 4, 2020
  2. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @ldne97 ,

    Welcome to the forum.

    Sounds like a frightening experince for you both.
    Did your mother check the libre reading against a meter test?

    I've not been that far down the line with a low but have come pretty close..

    I'll tag in @therower @kev-w @Juicyj
     
  3. xfieldok

    xfieldok Type 2 · Well-Known Member

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    Not T1 so no helpful suggestions.

    I can say from experience, always follow up a freestyle reading under 4. They are notoriously inaccurate under 4, although your mum was clearly having a hypo.

    Let's hope it was a one off.
     
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  4. sleepster

    sleepster Type 1 · Well-Known Member

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    I have had a couple of seizures from hypos but it was when I was asleep and I hadn't woken up, I was told it was because they were prolonged hypos but when the first one happened (which was the worst) we had no idea what had caused it and so I had to have an MRI, CCG and ECG to make sure it was nothing more serious. Because of the seizures I was offered a pump and since I've had it (8 years now) I haven't had any seizures. Does your mum have good hypo awareness usually?
     
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  5. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @ldne97 Although I no longer have to deal with hypos (after pancreas transplant) I had more than one where I fitted. The most memorable was about 20 years ago, therefore 13 years before I said goodbye to all this. I was downstairs sitting on a long bench parallel to the kitchen table and I disturbed both my wife and daughter who were upstairs. They came down to find me striking the table rapidly with my right arm, and my right foot, which was stretched out the length of the bench, was reacting similarly. The rest of me was inert and resting on the table, except my right cheek which had gone into spasms. I have had other hypos which have either caused total memory loss (including my father's name) or complete automatic pilot. Although they are never to be taken lightly, it worries me how much the media present them as "Thank God so-and-so was there to save this diabetic, who would otherwise have died". I must have had hundreds, literally, over a span of 54 years as a Type 1. This in no way lessens the effect it has, particularly on those trying to help, but I wanted to offer you some solace in what must have been a truly frightening experience. Your mum is fortunate to have you around. Keep up the good work!
     
    #5 Grant_Vicat, Apr 4, 2020 at 1:31 PM
    Last edited: Apr 4, 2020
  6. xfieldok

    xfieldok Type 2 · Well-Known Member

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    Forgot to mention. Don't forget, if your mum's scan was, say, 3.8, that was the reading 15 or 20 minutes before. It's really important to fingerprick if you are chasing a hypo.
     
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  7. kev-w

    kev-w Type 1 · Well-Known Member

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    I'd say not to trust the Libre for monitoring a hypo as it's telling you what you were 15 minutes ago or longer, always blood test on a dropping line under 4mmol, another suggestion would be not to lay down whilst waiting for the sugars to kick in but sit in a chair.

    Another thought is if you could afford £150 or so and buy a 'miaomiao, blucon or bubble' transmitter, these fit on top of the libre ( a pain but...) and use your mobile phone as a receiver with software to show you the readings, which using another piece of software (not too hard to use/do) you're able to see your mums readings 24 hours a day remotely.

    Also with hypos, I 'think' there can be two types, the fast one from to much fast acting/not enough food and the basal hypo which (for me) creeps up slowly lowering the O2 content of my blood slyly, and so if the two types coincide they can hit harder *my opinion, not a medical fact* and then add the possibility of the honeymoon period just for giggles...

    Oh and 'fitting' per se I think is 'just' part of the hypo as the hypo is a lack of oxygen in the blood thus depriving your brain of it, hence the danger, I've seen 1.8mmol on my test meter before but was functioning and conscious and aware of a very loud heartbeat throughout my body and was pretty scary....

    Good luck.
     
    • Winner Winner x 1
    #7 kev-w, Apr 4, 2020 at 1:46 PM
    Last edited: Apr 4, 2020
  8. ldne97

    ldne97 Family member · Member

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    Hello, thanks for responding.

    She didn’t check against a meter. The Libre hasn’t caused her any problems so far with the inaccuracies though we know it’s possible, so she rarely uses anything but the Libre to check, and of course while fitting we weren’t able to start testing her otherwise but I think it could definitely be something to do with this.
     
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  9. ldne97

    ldne97 Family member · Member

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    She normally does have good hypo awareness and is still in an early period where she gets very sweaty and faint, even when it’s a milder hypo so the awareness is still there.

    Sometimes she’ll nonchalantly announce to the room “does anyone else feel absolutely boiling hot right now?” before putting 2 and 2 together, so she has her moments!
     
  10. ldne97

    ldne97 Family member · Member

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    After speaking to her she keeps saying she should’ve checked with a meter but as I said it happened within 2 minutes - her checking with the Libre to her having a fit, so I think in this case it could have been a few variables coinciding and hopefully was a one off. Definitely can’t take for granted the Libre will be accurate
     
    • Hug Hug x 1
  11. ldne97

    ldne97 Family member · Member

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    I’m glad to hear it can be dealt with and isn’t always life or death! Her fit was similar in the uncontrollable jerking with her limbs just flapping. She also had memory loss and a lot of confusion - while having the seizure as she came around she was terrified of me, pointing and screaming at me because she didn’t recognise me, didn’t know what she worked as or what day it was etc, the usual memory loss things. She’s okay today, albeit with 2 black eyes and a lot of damage to the face. Just have to keep on top of it.

    Glad to hear you’re doing better now!
     
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  12. ldne97

    ldne97 Family member · Member

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    Definitely will be less trusting of the Libre when it’s getting to that dangerous edge of things. She’s a primary school teacher so I think the ease of it while in class has become a bit too comfortable!

    I think we’re definitely going to look into this as it would put all of our minds at ease, as well as hers. When she was first diagnosed there were a lot of sleepless nights out of fear of hypo-ing during the night as well, and I think that’s come back now after yesterday.

    It’s still a trial and error game at the moment for her basal insulin but she agrees about the hypos - there are just so many factors that affect it, it’s hard to pinpoint it.

    I’ve seen her have very low hypos before as well and only feel hot and dazed, so the fit sent us into complete panic that the worst was happening. You’re warned of these things but never think they’re going to happen.

    Thanks for your advice!
     
  13. therower

    therower Type 1 · Well-Known Member

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    @Idne97. Sounds like you’ve had a traumatic time at the hands of diabetes, or more to the point insulin and low blood sugars.
    I’ve been in exactly the same place your Mum found herself in on more than one occasion.
    28 yrs and I’ve survived everything that T1 has thrown at me.
    DO NOT google anything. Come here and get information from the people who know.
    My parents initially and my wife and daughter more recently have had to deal with me whilst hypo. I’ll not run through all the details but blood, stitches, ambulances and blisters are amongst things on the list.
    Diabetes thrives on one thing more than anything else in our lives. Negativity. Simple as that. If it can get us afraid it thrives.
    People just think it’s all insulin and carbs and that’s it. Unfortunately Diabetes is far more than that. It has an ability to install fear and doubt which can change how we live our lives. For along time many years ago it had a hold of me. Mostly a fear to go sleep at night, having to eat huge amounts of carbs before bed, ultimately poor control, more doubt, it all becomes a vicious circle.
    This is why it’s imperative that you have to be as positive as is possible. We have to be the ones in control even when it gets the better of us occasionally. Your Mums hypo must at the moment be feeling like the most negative event you could imagine. But you’ve got to look at the positives.
    1. Don’t ever trust technology. Gut feeling is always a better guide than technology. Not only your mothers but your gut feeling.
    Think back to how she was prior to the hypo, the look on her face, her complexion, he speech, her eyes, her actions. There will always be signs that a hypo is imminent.
    2. Don’t let your mother out of your sight when either she says or you feel she maybe going low. Very seldom do hypos see us just lay down. For me I always want to get up , move about, escape even.
    3. Never assume anything. Just because you’ve eaten recently, just because you’ve taken hypo treatment it doesn’t mean you will not go hypo. 99.9% of the time is what life is like with diabetes. Don’t obsess about the 0.1%. BUT don’t ever forget it.
    You learned a lot yesterday, good and bad. You and your mum have come through it. Diabetes gave it its best shot but ultimately you beat it.
    We occasionally recall hypos I’ve had down the years and end up having a good old laugh about them.
    Be positive, as difficult as it maybe at the moment it’s the best medicine for living with this condition.
     
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  14. LooperCat

    LooperCat Type 1 · Expert

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    I can't really add much to what the others have said, and I've not had that happen to me in my nearly 22 years of T1. I'd reiterate backing up a low Libre reading with blood always - they get very sketchy when you're low. And in a fast moving situation like a hypo with fast sugar to treat it, the 15 minute lag is pretty useless. Blood readings are always gold standard, which is why ambulance crews alway take them rather than trust a sensor reading.
     
    • Agree Agree x 1
  15. ldne97

    ldne97 Family member · Member

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    This was a very kind response - thanks very much for all your advice. It’s comforting hearing from people who have actually experienced it and possibly on a more gory scale as well!

    Definitely right about the technology, we’re looking into more reliable alerts and definitely using her meter more.

    I hope we can learn from this and take more care when dealing with the hypos, we’ve realised it’s not just mum who has to deal with it, it should really be all of us.

    Thanks again!
     
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  16. ldne97

    ldne97 Family member · Member

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    We ordered a Miao Miao tonight, many many thanks for your direction. It’s been very useful.
     
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  17. kev-w

    kev-w Type 1 · Well-Known Member

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    IMG_0459.PNG
    That photo is my 'nightscout' screen generated by iPhone software called 'xDrip' using the Miaomiao and will make alarm noises when my levels approach the yellow which is very useful although I should mention that the software doesn't always work (far left shows a non existent hypo) and is a learning curve, but so is T1 diabetes.

    Good luck to your mum, I brought 2 kids up from the age of 4 & 5 as a single dad, they're 26 and 27 now, we had a few occasions where things went wrong with my diabetes but we managed :) although I did embarrass the kids with a hypo on their school playground at the end of the day, I was working school hours on a building site and managed to hit the playground wearing rigger boots and shorts, hot day, hard graft and missed the warning signs and woke with a teacher feeding me his biscuit stash and milk and sugar but had some odd looks the next few days...
     
    #17 kev-w, Apr 5, 2020 at 8:22 AM
    Last edited: Apr 5, 2020
  18. ldne97

    ldne97 Family member · Member

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    That’s exactly what we need right now even if it’s just for an extra bit of support during the night or when she’s in the classroom.

    It’s really comforting to hear the less positive stories because sometimes constantly seeing people showing their 100% in range graphs every day, or seeing that everyone else seems to have it together can be a bit disheartening.

    Lots of ups and downs but we’re learning every day.

    Thanks again for all your help, it’s offered a lot of comfort.
     
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