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Please help with disabling attacks

V

veggy

Member
Relationship to Diabetes
Type 2
Hello. I am new to the forum and looking forward to talking to people. Just now I need help from folk who might know or have had similar experience.
I am 70, and been type 2 for 17 years, most of the time Metformin and Jardiance controlled.
For years now, every month or so I get disabling 'dissociative' attacks that the doctors can't identify. Over three days I get mental issues like inability to talk and access memory, confusion, anxiety and inappropriate anger. Physical symptoms include aversion to food and drink, hot scant urine, damp bed linen through persperation (like having a fever but no temperature). There are more symptoms but this will do for starters. A lot of these symptoms seem to chime with hypo events, according to some sites I've looked at. Any of you kind souls recognise what is becoming a disabling problem?
 
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veggy said:
Hello. I am new to the forum and looking forward to talking to people. Just now I need help from folk who might know or have had similar experience.
I am 70, and been type 2 for 17 years, most of the time Metformin and Jardiance controlled.
For years now, every month or so I get disabling 'dissociative' attacks that the doctors can't identify. Over three days I get mental issues like inability to talk and access memory, confusion, anxiety and inappropriate anger. Physical symptoms include aversion to food and drink, hot scant urine, damp bed linen through persperation (like having a fever but no temperature). There are more symptoms but this will do for starters. A lot of these symptoms seem to chime with hypo events, according to some sites I've looked at. Any of you kind souls recognise what is becoming a disabling problem?
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Welcome to the forum. It must be very worrying for you.
Are you testing your blood glucose when these episodes occur as some of the symptoms could be ones if blood glucose is low or high.
However the fact it goes on for several days is worrying. Not having usual bladder function indicated you may be dehydrated so kidney function is affected. Some of those symptoms sound like ones that could occur with what is called acute kidney injury caused by dehydration among other things.
I think you should persist with your doctor to have some blood tests at the very least, as it could be hormonal, or vitamin deficiency. Long term use of metformin can cause Vit B12 deficiency and it is something more mature people can suffer from anyway.
Please follow this up with your GP as they will have your medical history.

The other thing that occurred to me is you could be getting urinary tract infection which also can cause some of the symptoms.
 
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Hi and welcome.

So sorry to hear that you are having these recurring incidents. It must be very worrying for you and those who love you. None of the medications you are on can typically cause hypoglycaemia (hypo) but some of the symptoms are certainly similar however hypos are typically over a dealt with by an hour or two, not a day or more.

Jardiance (Empagliflozin) can cause/lead to urinary infections and that is certainly another thing which could cause those symptoms and with that cause, they would last for days or maybe even weeks if untreated. You say that you do not want to eat during these periods? Do you manage to eat something or do you mostly fast for the duration of these episodes. I am wondering if you not eating reduces the glucose in your blood and urine and enables your body to recover from the infection once your glucose levels drop.

I think if I was in your situation, I would want to know if it was related to my diabetes and to do that you would need to do some home testing when these episodes occur and perhaps some in between levels to get a baseline of what is normal. Do you have a BG meter to test your levels at home? It might also be helpful to keep a food diary and see if there is anything food or drink wise, which may be triggering these episodes. Maybe something particularly high in carbohydrates.

I know it is a long time ago but can you tell us a bit about how your diabetes diagnosis came about ie. was it picked up on a routine blood test or were you symptomatic and went to the doctors because of those symptoms and if so, what were they.

Do you know your most recent HbA1c result? This is the blood test used to diagnose and monitor your diabetes management over the years. It will usually be a number in excess of 47mmols/mol, but can be into 3 figures if things are seriously amiss. Knowing that number helps you to understand how serious your diabetes is and how much work you need to put into it to help manage it. By work I mean dietary changes and exercise/activity. I am not talking about going to the gym or running if you are not fit enough or able to do those things but can be just a regular daily walk if you are able and/or going for a swim or even dancing round your kitchen after a meal to burn off some of the glucose in your blood stream. If you are not able to stand or walk, doing some seated exercises can help.

If you don't have a Blood Glucose meter to test your blood at home and you feel that this would be helpful to you, we can recommend some that are reliable and economical to use for those self funding. Home testing can be a very powerful tool in helping you to manage your diabetes with the right testing regime and we can give you advice on that too, so please ask, if these are things you are interested in exploring.
 
Can you advise me on best and cheapest way to keep daily BS track. My nurse is urging me to get a Libre but it's very expensive for an old pensioner.
 
You could just use a blood glucose meter @veggy As your nurse mentioned tracking your blood sugar, you could ask if she could prescribe one. If not, then you could buy one. Ask here as some are better than others.

I hope they’ve ruled out other causes?
 
Inexpensive monitors can be bought on line (cheaper than the pharmacy) those with the cheaper strips are GlucoNavii, TEE2 and Contour Blue. You can generally get a starter kit which includes a few strips and lancets (which can be (unofficially reused) so you should also order extra strips. They are specific for that monitor.
It is often not appreciated that monitoring with a home monitor can make all the difference to good management of the condition.
 
Hi @veggy and welcome to the forum.

Agree with the others that checking your blood glucose would help but would not think of a libre yet. Start with some finger pricking, probably starting with some first thing in the morning readings and then try to see if your "funny turns" have anything to do with your blood glucose levels.

If you talk to your DN/GP nicely, they might prescribe a meter and strips because you want to use it to help them diagnose your dissociative attacks. If they are a penny pinching lot they might say no, but it is worth asking.
 
Thanks to everyone for your helpful suggestions. Been on Libre sensors for a month now and captured one of the attacks as it happened. Deffo hypo related. Graphs show fall from 13 mmol/l to less than 3 in just a few hours. This latest attack was, like most of them, while I slept, so called nocturnal hypoglycaemic events. Interestingly, the hypo event precedes the full onslaught of the attack symptoms, which last always around 48 hours. And Libre shows the BS level quickly returns to normal after the sugar level drop, yet the attack lasts for the next two days. Go figure!! What really angers me is for literally years I have been reporting these attack to my doctor and he's never once suggested a link with diabetes. The question now is what causes these events. That's the next step.
 
@veggy Libre suffers from compression lows, especially overnight. What you’re describing sounds like a compression low - ie the sensor being pressed and generating a wrongly low reading.

Your symptoms are worrying, and I’d press for further investigation, eg could it be a form of epilepsy or whatever?
 
Epilepsy investigated, rejected. Good idea but... and why the correlation with the attack? If a compression artefact, why in the whole month of Libre monitoring did it happen within hours of one of my mysterious attacks, that's a 1 in 30 chance?
 
veggy said:
Epilepsy investigated, rejected. Good idea but... and why the correlation with the attack? If a compression artefact, why in the whole month of Libre monitoring did it happen within hours of one of my mysterious attacks, that's a 1 in 30 chance?
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I don’t know @veggy but correlation isn’t causation as they say. I’ve made wrong deductions about a cause of health issues, so I think keeping an open mind and keeping pushing is best. If it were hypos, the symptoms of those don’t last 48hrs. A normal hypo goes quickly and you feel back to normal very soon. Even bad ones don’t cause symptoms that last two days. They also don’t cause disassociation.

What you’ve described is quite specific and I’m sure there must be experts out there who could work out what’s causing it. It must be frustrating not having an answer. I think I’d literally make a list of things that have been ruled out and things that are yet to be ruled out. I’d also keep a diary detailing food, exercise, etc, in the hope that that will give you possible triggers to investigate re the attacks.
 
As @Inka says, what you describe is a "compression low" and not a genuine hypo. You will have laid on your sensor in your sleep in such a way that the sensor applies constant pressure to the tissue under it that it is sampling and that changes the chemistry of that tissue and results in a false low reading. The fact that you were high and dropped low and then returned to the previous high level tells you it is a false low reading. When you roll off the sensor again, it returns to it's previous level usually with a slight over correction first and then settles back down, so it might have come up to 14 and then settled back to 13. If it was a genuine hypo, you would not have returned to that previous high level. The liver can release glucose to recover from a hypo but will not release enough to push you back up to the previous inflated level.

I am sure it must be frustrating and scary to have these episodes but they are more likely to be associated with high BG than low BG in my opinion. Perhaps intermittent urinary infections as those can definitely cause confusion and irritability.
Having levels in the 13s overnight is not ideal and if that is a regular occurrence then your diabetes management needs action/adjustment to bring those levels down. You are taking medication Jardiance to remove excess glucose from your blood into your urine and glucose in the urine is a prime cause of infections, which could easily cause the symptoms you are experiencing.
 
Speak to the GP about UTIs and see if they will agree to do testing any time you have these symptoms. If they do a few pots and printed labels you can then drop them in on the days you have these attacks.
 
Had a long discussion with my professional diabetes nurse and we have a working hypothesis which we are now testing. For many years I have taken my Metformin in the evening, which nursy says may on occasion conspire with the liver to create a real sugar low which can then take days to recover from as effectively a refactory hypo. We are experimenting with shifting the Metformin to the morning to break the cycle. So far so good. Meanwhile I have sacked my useless GP who couldn't even pick up on my many symptoms indicating some correlation with my diabetes let alone explore a solution.
 
Thanks for the update @veggy

Hope that small change has a big impact. Have you had more episodes in the early months of the year?
 
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