I have been with my partner 3 years and he has Type 1 diabetes. At the beginning of the year I experienced him having a seizure, which has led to a lot of anxiety for me as someone supporting him. I feel constantly on edge for example if I can’t hear him in the house for periods of time. He also often twitches in his sleep and I will wake up shouting on him to make sure he’s okay which is disrupting both of our sleeps. He often panics when his reading is low and I am struggling to reassure him as I am also now panicking after experienced what can happen in the worst case scenario. We have recently been on holiday and I had a lot of anxiety being in a different country, and feeling helpless if the worst was to happen ( seizure) and scared to see him go through that again and how to help him alone if he were to fall/hurt himself/ not come back around. ( he is a lot bigger than me too so l struggle to help him if he needed on a bed or help when unconscious). Sorry for the lengthy post, Just looking for any advice, similar situations and coping mechanisms to help my anxiety as I want to support him as best as I can which I’m unable to do right now as it’s becoming a lot for my mental health.
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Anxiety after partner having type 1 seizure
- Thread starter Sunni40
- Start date
Leadinglights
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- She/Her
Welcome to the forum.
Brilliant you are seeking help with supporting your partner.
Are the seizures associated with low blood glucose (hypos) if not then it needs investigating as to why they happen.
What technology does he have to monitor blood glucose so these hypos can be picked up early and he can take his chosen hypo treatment.
How long has he been Type 1 and what insulins does he take.
Is he himself concerned when this happens.
Remember if needed you can always call 999 for help.
Hello 🙂 Thank you so much for your reply, yes the seizure I witnessed was a low blood glucose hypo. It was when he was having a nap and his Libre had disconnected, when he woke up due to feeling hypo it was too late by the time he had gotten up to get sugar.
The libre has been disconnecting a few times recently which isn’t usually too much of an issue but during the night or a nap it means the alarm isn’t going off. Which is why I think I’m waking up in a panic thinking the worst, as that’s when it happened- during sleep.
He was diagnosed at 16 and is now 27 so over 10 years and has had maybe 6 seizures over that time but 2 of them have happened in the last year. The libre is the freestyle 2, I’m not sure if this is a common issue with the disconnecting? And He uses novorapid and levemir for his insulin.
For glucose treatment the glucose gels and shots don’t seem to work for him so he no longer orders these and usually has a coke to take his readings up, sometimes that can take up to an hour for them to go up which causes the panic as we watch his levels drop. Then often he over takes the sugar and ends up with a really high reading and there just seems to be no happy medium as he gets frustrated when his high and anxious when it’s low.
He does also have anxiety’s when his reading is low and gets nervous/ doesn’t want to talk when they are like this as he’s scared of having another seizure.
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No he hasn’t, which i encourage him to do but sometimes I don’t feel like he’s very proactive with it. I have spoken to him about how I am feeling with my anxieties the moment and we have agreed to try and get an appointment together, which I think will be good as I want to learn as much as I can to support him. Thank you for your reply🙂
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome to the forum @Sunni40 . I am pleased that you have found us, and it is great that you are looking to support your partner with this.
A seizure is very scary for both of you, and it would be good to have an appointment with his team to review his management. A review of the Libre data could help to show whether his basal insulin dose needs to be changed, and/or whether his carb ratios need to be adjusted. I tend to forget to look back at the data when all is going well and then get a trigger to do a good review (or a reminder from other posts on here)
The Libre can help to head off hypos (but only when it is working). Some lows can be caused by compression on the sensor. This is more common at night, and can be irritating. Lows on the sensor are worth checking with a BG meter,
To reduce the anxiety levels what does your partner have his low alarm set at? It can be useful to have this set above the hypo level (4), which then gives some time to take action before having a hypo. Many set theirs at 5, and then eat something quick acting if the alarm goes off. I do this and still take some insulin with the snack, knowing that this is going to raise my levels quickly but will also avoid me going high afterwards.
Having had a hypo it is easy to over treat it and then go very high.
You mention that he is using coke to treat the hypos. Is this full sugar? You mentioned that it can take an hour to get back up from a hypo. He may find that a fruit juice brings him back up more quickly and is easier to get down. I remember @rebrascora emphasising that the glucose is absorbed quickly in the mouth, so I tend to take my time swallowing when treating a hypo.
We are told to wait 15 minutes before testing again after treating a hypo. Those are always the longest 15 minutes. I find a need to set a timer to avoid testing again too soon.
Levels rising and falling is just part of having T1, and it is a case of finding ways of keeping in range when we can. 70% in range is considered good management. 100% is impossible. After meals it is common to see a rise, and this can be reduced by timing our meal bolus, delivering it a while before we eat. The time gap varies for each of us and it is a case of trial and improvement to discover what works for each of us.
Do keep the questions coming. Thee is a wealth of experience to tap into on here, and do encourage your partner to join. Let us know how you both get on.
A seizure is very scary for both of you, and it would be good to have an appointment with his team to review his management. A review of the Libre data could help to show whether his basal insulin dose needs to be changed, and/or whether his carb ratios need to be adjusted. I tend to forget to look back at the data when all is going well and then get a trigger to do a good review (or a reminder from other posts on here)
The Libre can help to head off hypos (but only when it is working). Some lows can be caused by compression on the sensor. This is more common at night, and can be irritating. Lows on the sensor are worth checking with a BG meter,
To reduce the anxiety levels what does your partner have his low alarm set at? It can be useful to have this set above the hypo level (4), which then gives some time to take action before having a hypo. Many set theirs at 5, and then eat something quick acting if the alarm goes off. I do this and still take some insulin with the snack, knowing that this is going to raise my levels quickly but will also avoid me going high afterwards.
Having had a hypo it is easy to over treat it and then go very high.
You mention that he is using coke to treat the hypos. Is this full sugar? You mentioned that it can take an hour to get back up from a hypo. He may find that a fruit juice brings him back up more quickly and is easier to get down. I remember @rebrascora emphasising that the glucose is absorbed quickly in the mouth, so I tend to take my time swallowing when treating a hypo.
We are told to wait 15 minutes before testing again after treating a hypo. Those are always the longest 15 minutes. I find a need to set a timer to avoid testing again too soon.
Levels rising and falling is just part of having T1, and it is a case of finding ways of keeping in range when we can. 70% in range is considered good management. 100% is impossible. After meals it is common to see a rise, and this can be reduced by timing our meal bolus, delivering it a while before we eat. The time gap varies for each of us and it is a case of trial and improvement to discover what works for each of us.
Do keep the questions coming. Thee is a wealth of experience to tap into on here, and do encourage your partner to join. Let us know how you both get on.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome @Sunni40 🙂 I had a hypo seizure many years ago and it was terrifying - your partner and you have my sympathies. The horrible thing is that you’re usually aware of it.
You mention the Libre disconnecting - my first thought is for him to get a Libre receiver. He should then set his Low alarm at the highest setting, which is 5.6 I think. However, he might be better off asking for a Dexcom. This is something he should discuss with his team. Something like the G7 has an amazing array of alarms, including Falling Fast.
You mention him having these seizures during naps and when asleep. I find if I have a daytime nap, my blood sugar drops (presumably due to lack of stress) so I always make sure I’m above a certain number to nap and have a small amount of carbs beforehand.
As your partner has had a lot of seizures and is also twitching at night, then it sounds like his insulin doses might need adjusting. Does he take the Levemir twice daily? If so, he might need less at night than in the morning. Both doses might also need to be reduced.
His team might also suggest he runs a little high, keeping above a certain number for a while as much as possible. I’m presuming he carb counts and adjusts his Novorapid? Is there any pattern to the seizures or any particular times they happen in relation to food? Has he worked out reasons for any of them?
You mention the Libre disconnecting - my first thought is for him to get a Libre receiver. He should then set his Low alarm at the highest setting, which is 5.6 I think. However, he might be better off asking for a Dexcom. This is something he should discuss with his team. Something like the G7 has an amazing array of alarms, including Falling Fast.
You mention him having these seizures during naps and when asleep. I find if I have a daytime nap, my blood sugar drops (presumably due to lack of stress) so I always make sure I’m above a certain number to nap and have a small amount of carbs beforehand.
As your partner has had a lot of seizures and is also twitching at night, then it sounds like his insulin doses might need adjusting. Does he take the Levemir twice daily? If so, he might need less at night than in the morning. Both doses might also need to be reduced.
His team might also suggest he runs a little high, keeping above a certain number for a while as much as possible. I’m presuming he carb counts and adjusts his Novorapid? Is there any pattern to the seizures or any particular times they happen in relation to food? Has he worked out reasons for any of them?
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi and welcome.
Really sorry to hear you experienced such a horrid and scary situation. Seizure are very rare, or they should be so his diabetes management really needs looking at, so it is great that you are trying to get an appointment if he has had so many and in my view, 6 seizures in 10 years is way too many. It might be worth asking about a DAFNE course which is an intensive education course for keeping yourself safe with insulin in all manner of everyday situations and learning all the factors which can cause your levels to drop.
First to consider is why it happened, so that you can take steps to try to prevent it in similar situations in the future. Not meaning to be personal, but had he done any physical activity before the nap. Physical activity can make any insulin in your system much more effective and needs to be considered if you exercise or do something physical whilst your mealtime insulin is still active, so up to 4-5 hours after injecting for a meal. Many people don't consider that things like sex are physical activity and often it can be spontaneous, so you don't consider it when you inject your meal time insulin like you would if you were intending to go for a run or a swim or a game of football in the afternoon. Most of us reduce our meal time insulin if we plan to exercise afterwards or make sure to top up with carbs if it is unplanned activity.
Alcohol can also lower levels and cause hypos as can hot weather.
It concerns me that he had to get up to get his hypo treatment. It really is important to have them within reach at all times but particularly when waking from sleep as a hypo in that situation can make you much more vulnerable. I keep my hypo treatment of choice (jelly babies) on me at all times and on the bedside table during the night so I can literally reach across and get them without even sitting up or putting the light on. I also have them in the bathroom as a hot bath or shower, particularly after exercise, can drop your levels quickly. I personally wouldn't find a can of coke particularly practical because there is quite a volume to drink to get enough glucose, plus I can't drink fizzy stuff fast and I would have to sit up to drink it whereas I can chew jelly babies whilst lying down. As @SB2015 says, your hypo treatment will absorb quicker in your mouth than gulping it straight down so perhaps the gel sachet's would have been more effective if he had held them in his mouth. The mouth is also closer to the brain than the stomach so the glucose absorbed by the cells in the mouth will get to the brain quicker than from the stomach. 3 well chewed jelly babies or 4-5 glucose tablets should be very effective in bringing levels up..... BUT you will not see that recovery on Libre for quite some time and should absolutely not rely on Libre or other CGM (Constant Glucose Monitor) for assessing recovery from a hypo. You should always revert to finger pricking 15 mins after treating a hypo to check recovery because the way the sensors work means that it will almost always show your levels continuing to drop 15 mins after hypo treatment and cause you to panic and over treat them which will result in a high later which is not good for the body either. So finger prick kit should be close to hand too in these situations to check your blood for recovery and not rely on the sensor at these times. Having a good disciplined routine with hypo treatment is important but prevention is obviously better.
You mention the Libre keeps dropping out..... Does he have other Bluetooth devices paired with his phone? If so, that might be the issue as I believe Libre is not a strong signal. Keeping the phone close is obviously also important particularly in situations like this when your life might literally depend on it. Personally I use the dedicated Libre reader rather than the phone app and never have a problem with not getting alarms. I have to scan to get readings rather than get them automatically like they do with the phone app but the alarms are really reliable and it isn't affected by other BT devices that might be connected to the phone or OS updates which can throw the LibreLink app into a wobble from time to time. You can also use the Libre reader as a BG meter. Putting some effort into sorting the problem with his phone dropping connection should definitely be a priority. And also having his low alarm set higher. The fact that he is realising too late that he is low suggests that his hypo awareness is affected and he perhaps needs to put some work into improving that by running his levels a bit higher for a while, so his body learns to spot low BG before it gets too low and warn him earlier, even if the Libre has dropped out. Running low too often can cause the brain to get used to these lower levels as being normal and erode the normal early hypo awareness signs. Good hypo awareness would be getting those signs in the low 4s which gives you time to respond well before things get critical. If your partner's body isn't giving him warning signs until he is close to passing out/fitting, then he needs to work on improving his hypo awareness by running consistently higher.... not talking silly high but maybe keeping above 6 or even 7 as much as possible.
Finally, a pump might be the answer and having seizures should probably qualify him, so that is something to consider asking about when he sees his nurse.
Anyway, those are just a few of the things that occurred to me whilst reading your post. I hope some of them are helpful as this situation is not normal for people with Type 1 and with help and some effort on his part he should be able to improve things and hopefully significantly reduce the risk of it occurring again. I can totally understand how scary and unsettling it must be for you and it is great that you want to support him with resolving it, but ultimately he has to make some effort and to know that it isn't normal for this to happen and just accept it as part of living with Type 1, especially with modern insulins and technology but you do need to put aside some time and "headspace" to sort it out.
Really sorry to hear you experienced such a horrid and scary situation. Seizure are very rare, or they should be so his diabetes management really needs looking at, so it is great that you are trying to get an appointment if he has had so many and in my view, 6 seizures in 10 years is way too many. It might be worth asking about a DAFNE course which is an intensive education course for keeping yourself safe with insulin in all manner of everyday situations and learning all the factors which can cause your levels to drop.
First to consider is why it happened, so that you can take steps to try to prevent it in similar situations in the future. Not meaning to be personal, but had he done any physical activity before the nap. Physical activity can make any insulin in your system much more effective and needs to be considered if you exercise or do something physical whilst your mealtime insulin is still active, so up to 4-5 hours after injecting for a meal. Many people don't consider that things like sex are physical activity and often it can be spontaneous, so you don't consider it when you inject your meal time insulin like you would if you were intending to go for a run or a swim or a game of football in the afternoon. Most of us reduce our meal time insulin if we plan to exercise afterwards or make sure to top up with carbs if it is unplanned activity.
Alcohol can also lower levels and cause hypos as can hot weather.
It concerns me that he had to get up to get his hypo treatment. It really is important to have them within reach at all times but particularly when waking from sleep as a hypo in that situation can make you much more vulnerable. I keep my hypo treatment of choice (jelly babies) on me at all times and on the bedside table during the night so I can literally reach across and get them without even sitting up or putting the light on. I also have them in the bathroom as a hot bath or shower, particularly after exercise, can drop your levels quickly. I personally wouldn't find a can of coke particularly practical because there is quite a volume to drink to get enough glucose, plus I can't drink fizzy stuff fast and I would have to sit up to drink it whereas I can chew jelly babies whilst lying down. As @SB2015 says, your hypo treatment will absorb quicker in your mouth than gulping it straight down so perhaps the gel sachet's would have been more effective if he had held them in his mouth. The mouth is also closer to the brain than the stomach so the glucose absorbed by the cells in the mouth will get to the brain quicker than from the stomach. 3 well chewed jelly babies or 4-5 glucose tablets should be very effective in bringing levels up..... BUT you will not see that recovery on Libre for quite some time and should absolutely not rely on Libre or other CGM (Constant Glucose Monitor) for assessing recovery from a hypo. You should always revert to finger pricking 15 mins after treating a hypo to check recovery because the way the sensors work means that it will almost always show your levels continuing to drop 15 mins after hypo treatment and cause you to panic and over treat them which will result in a high later which is not good for the body either. So finger prick kit should be close to hand too in these situations to check your blood for recovery and not rely on the sensor at these times. Having a good disciplined routine with hypo treatment is important but prevention is obviously better.
You mention the Libre keeps dropping out..... Does he have other Bluetooth devices paired with his phone? If so, that might be the issue as I believe Libre is not a strong signal. Keeping the phone close is obviously also important particularly in situations like this when your life might literally depend on it. Personally I use the dedicated Libre reader rather than the phone app and never have a problem with not getting alarms. I have to scan to get readings rather than get them automatically like they do with the phone app but the alarms are really reliable and it isn't affected by other BT devices that might be connected to the phone or OS updates which can throw the LibreLink app into a wobble from time to time. You can also use the Libre reader as a BG meter. Putting some effort into sorting the problem with his phone dropping connection should definitely be a priority. And also having his low alarm set higher. The fact that he is realising too late that he is low suggests that his hypo awareness is affected and he perhaps needs to put some work into improving that by running his levels a bit higher for a while, so his body learns to spot low BG before it gets too low and warn him earlier, even if the Libre has dropped out. Running low too often can cause the brain to get used to these lower levels as being normal and erode the normal early hypo awareness signs. Good hypo awareness would be getting those signs in the low 4s which gives you time to respond well before things get critical. If your partner's body isn't giving him warning signs until he is close to passing out/fitting, then he needs to work on improving his hypo awareness by running consistently higher.... not talking silly high but maybe keeping above 6 or even 7 as much as possible.
Finally, a pump might be the answer and having seizures should probably qualify him, so that is something to consider asking about when he sees his nurse.
Anyway, those are just a few of the things that occurred to me whilst reading your post. I hope some of them are helpful as this situation is not normal for people with Type 1 and with help and some effort on his part he should be able to improve things and hopefully significantly reduce the risk of it occurring again. I can totally understand how scary and unsettling it must be for you and it is great that you want to support him with resolving it, but ultimately he has to make some effort and to know that it isn't normal for this to happen and just accept it as part of living with Type 1, especially with modern insulins and technology but you do need to put aside some time and "headspace" to sort it out.
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There's some brilliant advice above.
I just wanted add one thing.
I noticed you commented that he takes a long time to recover from a hypo and often over treats.
Does he use finger pricks to check a hypo and hypo recovery as recommended?
Libre (and other CGMs) are fantastic pieces of kit if their limitations are understood.
There are two that are relevant here
- CGMs have a tendency to over-egg highs an under-egg lows. Therefore, it is important to double check with a finger prick before treating a high or a low unless he feels obviously hypo.
- you may have heard that interstitial fluid (the stuff a CGM measures) runs 10 to 15 minutes behind blood when it comes to calculating BG. Therefore, Libre predicts the current reading by extrapolating the current trend by 15 minutes. This means, if his BG was falling (or flat and low) 15 minutes ago, Libre will tell him he is still low or even lower despite recovery. Therefore, once again, it is important to double check hypo recovery with a finger prick. This avoids overtreating and shows the hypo recovery is likely to be shorter than it seems.
I just wanted add one thing.
I noticed you commented that he takes a long time to recover from a hypo and often over treats.
Does he use finger pricks to check a hypo and hypo recovery as recommended?
Libre (and other CGMs) are fantastic pieces of kit if their limitations are understood.
There are two that are relevant here
- CGMs have a tendency to over-egg highs an under-egg lows. Therefore, it is important to double check with a finger prick before treating a high or a low unless he feels obviously hypo.
- you may have heard that interstitial fluid (the stuff a CGM measures) runs 10 to 15 minutes behind blood when it comes to calculating BG. Therefore, Libre predicts the current reading by extrapolating the current trend by 15 minutes. This means, if his BG was falling (or flat and low) 15 minutes ago, Libre will tell him he is still low or even lower despite recovery. Therefore, once again, it is important to double check hypo recovery with a finger prick. This avoids overtreating and shows the hypo recovery is likely to be shorter than it seems.
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Lots of things have already been covered. Dexcom G6 and G7 both have an app called the Follow app which you can connect on multiple phones so you would get alerts as well as him. The Dexcom one doesn’t have it enabled.
Do you have a glucagon pen in the fridge (that is in date) and do you know how to use it? If you are ever unable to rouse him enough to get glucose treatments into him this is your emergency device that you use as you call an ambulance.
Mini bags of skittles and Haribo have about the right number of carbs and are handy to have stashed around the house.
Do you have a glucagon pen in the fridge (that is in date) and do you know how to use it? If you are ever unable to rouse him enough to get glucose treatments into him this is your emergency device that you use as you call an ambulance.
Mini bags of skittles and Haribo have about the right number of carbs and are handy to have stashed around the house.
Lucyr
Well-Known Member
- Relationship to Diabetes
- Type 1
Hopefully he also doesn’t drive? If he does then do be aware that this is illegal. If he’s had two seizures in the last year these must be declared to the DVLA and licence revoked. There is an exception if they were when asleep but your description of things sounds like even if they’re only when asleep he should be reviewing whether he has good enough hypo awareness, as hypo unawareness must also be declared to the dvla.
Definitely sounds worth him going on a carb counting course, even if he’s done one before. Life with T1 doesn’t have to be like this, it’s perfectly possible and common even for needing help with a hypo to be a less than once in 10 years event.
Definitely sounds worth him going on a carb counting course, even if he’s done one before. Life with T1 doesn’t have to be like this, it’s perfectly possible and common even for needing help with a hypo to be a less than once in 10 years event.
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Thank you all so much for your help, some of these things have been really helpful and we’ve spoken a lot about it. Hopefully we can get an appointment to help make life a bit easier for us both through trying new things and learning together!
Leadinglights
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- She/Her
Don't hesitate to come back with further question or ask for help if needed.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Diabetes can be quite isolating as many of us don't know anyone in the real world with it who we can compare notes with, so it is often possible to assume that everyone experiences it the same but it can be highly individual. Being able to come on the forum here and swap/share experiences with others really gives you an understanding of how best to manage it and what is normal and what isn't and what you can try to fix whatever problems you are experiencing. You certainly shouldn't just accept that seizures happen from time to time and it is part of having Type 1. There are things you can do to try to prevent them but if you don't know other people to discuss it with, you just don't know what those things are. Most Type 1s just muddle along on their own with an occasional appointment with a consultant or nurse once a year if they are lucky and perhaps don't feel they can discuss these issues or they just have to put up with them, but you absolutely don't.
The forum is here to help you and your partner in any way we can, so do please ask if there is anything you don't understand or need more help with.
The forum is here to help you and your partner in any way we can, so do please ask if there is anything you don't understand or need more help with.