Hypo fear

[tulip87]

Just back from a 4 day admission of prolonged hypos (joy of gliclazide...)

However it was the worst spell I've had yet, involving an admission to resus for one, and another episode of complete unconsciousnes for a fairly substantial length of time. Hypos requiring 3rd part assistance and involving complete prolonged unconsciousness (and the information I was very very lucky to be in hospital at the time...) is not something I've had this level of experience before and am quite frankly terrified. I'll be back on the gliclazide (lower dose) soon, and whilst a lot of things were going on which between them are thought to have caused the hypos, the irrational part of me is so scared this will happen again.

Does anyone have experience of this and advice how to cope either physically or psychologically. For one thing, I know hypos make me tearful and over emotional, which is probably why I'm crying as write this, but think even accounting for that this will be worrying me for a while.

 

[AliB]

This is a difficult one Tulip, because it is not something I personally have had much experience of. My numbers were way to high for too long for that to be an issue, and since going low-carb (which has helped to stabilise my sugar levels), apart from a few right at the beginning as my body was sorting itself out I haven't really had any problem.

I do get a warning - usually feeling 'not right' and a bit shaky/spacey which is enough to catch it before it becomes a problem. Having said that, I did get a little low last night - I'd had my normal dose of Metformin and Insulin but wasn't feeling very well (a threatening cold I think) and hadn't eaten enough for it to work on. When I tested it was 4.2 which is borderline for me.

I had half a square of plain choc and that was enough to bring it back up and it was fine after that. When I have had them in the past I would usually have just a little amount of carbs just to take it up enough to be out of the 'danger' zone, then have some protein to bolster it without spiking it.

I was only saying to my husband today that I think sometimes part of the problem is that people feel a bit low and have loads of carbs to boost it back up, but invariably they have too much which sends it soaring, then it plummets again and they are back into a hypo before they know it. We have a friend like that who seems to spend his days bouncing between highs and lows.

Why are you on Gliclazide? Have you tried controlling your Diabetes with diet at all?

I have been fine on Metformin and haven't needed to try anything else, but I know a friend of mine was on Gliclazide and had to come off it because she couldn't control her sugar levels on it and it made her feel bad. Hypos do seem to be a fairly common side effect of the drug.

 

[kegstore]

Tulip I really do feel for you as I think I know what you're going through. As a T1 I know next to nothing about drugs used in T2, but I'm guessing one of your main concerns is for the psychological effect of these episodes on you?

For weeks after I had my first unwarned hypo - at night - I was terrified of even going to sleep for fear that it would happen again. Admittedly it was a particularly bad one requiring 2 ambulances and a short stay in a Brussels hospital, but the utter confusion interspersed with flashes of complete lucidity are things that I have never forgotten.

Sadly it was the first of many such scenarios, but I was so busy with one thing and another, and my obstinate refusal to manage my diabetes more closely/effectively. Over a number of years I almost became accustomed to occasionally waking up in another part of the house, with little knowledge of how I got there. But the emotional impact on me was something I was totally unprepared for.

Thankfully I have a very good support network of family, friends and a superb healthcare team, all of whom I have discussed my experiences and fears with. This has helped me enormously, and I can't commend this to you highly enough. Developing a coping strategy that works for you is definitely a challenge, very personal to you and something that happens over time - there's no "quick fix" in my experience. The physical side of things is more about taking hold of your diabetes and managing control much more rigidly, but you may already be doing this.

I'm not sure if any of this has helped, but maybe knowing you're not alone will do. Take care.

 

[jopar]

Hi Tulip

I hope that you are feeling a lot better and recovery well...

Even though gliclazide can give the user an hypo, it tends not end quite as seriously as yours did, as the body does still have intack the ability to switch off insulin prduction and dump the liver.. An hypo at this level would suggest one of two things, either there was one hell a lot of excess insulin floating around your body or the switching mechisum didn't work to switch off further production or dump the liver,

It does make one wonder if there is another underlying problem that hasn't been digonsed, Addisons hits the diabetic in a similar way, give what on the onset looks like a very serious hypo, but it's the addisons dropping the glucose levels rather than insulin (very simple explination of what happens) it might be worth having a talk with your doctor to whether there could be another possible cause apart form gliclazide.. Just to rule other causes out..

 

[tulip87]

Thanks for your comments Ali.

I think sometimes part of the problem is that people feel a bit low and have loads of carbs to boost it back up, but invariably they have too much which sends it soaring, then it plummets again and they are back into a hypo before they know it.

Agree with you on this one, it's a big danger. Not the problem here though - even between hypos my sugars were only coming up to 5-6 with intensive treatment...and was in the hospital so they were making sure it was being treated appropriately.

Why are you on Gliclazide? Have you tried controlling your Diabetes with diet at all?

Sigh, I wish diet was a possibility (as in purely diet - since diagnosis my diet has changed dramatically and is low-moderate carb and no simple sugars). Unfortunately my diabetes is odd. I have MODY - not type 1, not type 2. So I am not insulin resistant like most type 2s, and therefore many drugs used to treat type 2 will not work (or so I have been told, and I've certainly had no joy with metformin or avandia). I am not type 1 as am not totally insulin deficient, however I am partially insulin deficient (I have an impaired fasting response and so do not produce insulin in response to high fasting sugars, but do once I start eating) due to my particular form of MODY and so need medication to help me produce more insulin - sulphonylureas or insulin itself. It's a bit complicated unfortunately and there is no perfect answer, hence stuff like this happens...

I know a friend of mine was on Gliclazide and had to come off it because she couldn't control her sugar levels on it and it made her feel bad

Sorry to hear about your friend's experience... hope she's found something that suits her now? I'm pretty lucky, gliclazide was doing a good job until I got ill, I think why me and the doctors are keen to stick with it if at all possible.

 

[tulip87]

Kegstore thank you, you've hit the nail on the head.

I'm guessing one of your main concerns is for the psychological effect of these episodes on you?

I think because I'm a medical student everyone presumes I can cope fine and know what to do. So was due to see the diabetic nurse Monday (discharged yesterday) but they called today and said they didn't need to see me, and I could call in 10 days if was still concerned. Now on the one hand I understand this - yes, I have no problem knowing when to restart my gliclazide, how to decide how much to take etc. But I do feel I need someone to talk to and keep an eye on me psychologically after this. I was hoping to talk to the diabetes nurse about the distress I'm feeling post hypo.

Just hearing your description really helps thank you, I do feel less alone. Just knowing someone else has experienced that fear of sleep and "what might happen" really helps (I know in my head that lots of people have experienced it, but actually reading it personally helps if that makes any sense).

I was terrified when I woke up after both hypos, particularly in resus, somehow I knew I was at risk and in danger, and that my life was at stake. Both times I was convinced I was dying. And then long term it's hard because they found me unconscious and unrousable after maximum 1hour (Since last BM check), but they said if I'd been at home and not being checked on... I'd have probably been found dead the next morning as my glucagon supplies were exhausted. Eek. What's to stop this happening in future? I guess I'm only going to exhaust my glucagon if I have more prolonged and repeated hypos, but this has happened before and so I know it could again. Sorry to rant, I just wanted to "vocalise" why I'm so afraid.

Given it doesn't seem I can talk to the DSN do you know who I could talk to about this? I really feel I need to "debrief" somehow...

 

[tulip87]

Hi Jopar, thank you so much for your post.

I hope that you are feeling a lot better and recovery well...

Yep, definitely getting there. No hypos for over 48 hours, and no serious ones for over 60 hours now so pretty sure gliclazide all out my system (blood sugars been in double figures for 24 hours! I know this is bad long term, but short term I needed it to know I'll be ok)

hypo at this level would suggest one of two things, either there was one hell a lot of excess insulin floating around your body or the switching mechisum didn't work to switch off further production or dump the liver

This is interesting, thank you. Was told yet again in this admission how gliclazide is long acting, and so whilst the risk of serious hypos is significantly lower than when on insulin, they have the capacity to be prolonged (especially if due to illness and inability to maintain carb intake, as in my case here) and this then can deplete glucagon store so that liver dumping does not occur and serious hypos can happen. I presume ths is what happening, but it is interesting about the thought the switching mechanism might not be happening (because this is now the 4th time this sequence of events has happened for me during intercurrent illness...). Perhaps one to look into...

it might be worth having a talk with your doctor to whether there could be another possible cause apart form gliclazide.. Just to rule other causes out..

It's a good thought. I've got an appointment start of December so think that's something I'll be doing... Thought I know they've checked thyroid and kidney function and those both ok. I really should know how you test for Addison's but have had a mindblock... do you know? I know when this happened I was producing normal amounts of cortisol which I think might be the test? But maybe there's something... would be good to find out if so.

Thanks for your encouragement.

 

[AliB]

Tulip, have you had a look at any research concerning Diabetes and Leptin? Whilst it may not actually help your situation it might go some way to explaining why?

 

[kegstore]

Tulip are you saying you don't feel you can or want to talk to your DSN? If your DSN says he/she doesn't need to see you that's all very well, but it doesn't help you out at all and you are the patient after all! But if you don't want to debrief to the DSN that's different and I'm not sure what to suggest, except maybe that some of my best "sharing" has been with friends who have little or no medical knowledge at all, and just the act of unloading my fears helped enormously. But I realise I'm in a very fortunate position as I also have an excellent healthcare team (even the GP) who are always prepared to listen to my woes.

 

[tulip87]

Hi Kegstore,

No I would like to talk to the DSN about it. I'm presuming they are the right person? I don't regularly see one at the moment, just my consultant, but I met one of them last week while inpatient (before the major hypos though, so did no discuss them). I think the problem is I wasn't sure what their role is. And also they have very busy lives, lots to be doing. So I agree it is fair that I don't need to see them to discuss my medication regime etc, I can manage the physical/numbers/control side ok. However being a medical student does not prepare me for the awful emotions and so I would like to talk to one of them about that, if it's their role. Perhaps I should get back on the phone on Monday and say I do feel I need an appointment and see what happens. I would just try to go to a counsellor, but I feel it perhaps needs to be someone with experience of diabetes to know quite where I'm coming from.

 

[copepod]

Tulip, as you've mentioned that you're a medical student, I wonder if there's any articles on student BMJ website about having diabetes as a medical student and into a medical career? I was a qualified RGN (nurse) by the time I got type 1 diabetes, and my main psychological problem was total lack of appropraite information from DSN - she really didn't know what to do with a 30 year old recent BSc Marine Biology graduate in 1997 (diagnosis made professional SCUBA diving, boat handling, minibus driving etc impossible), just laughed when I asked if I'd have to stay in hospital to start on insulin (that had been common practice when I was nursing a few yeasr earlier), and I still don't know why I was started on bimodal insulin instead of basal bolus regime. I realise that my situation, both profession / stage of career / type of diabetes /treatment are all different to you. Some medical professionals do seem to find having fellow medical professionals / students as patients particularly challenging. Many diabetes teams have specialist counsellors - that may be a good solution for you; I've also found that dieticians, particularly involved in DAFNE courses (for type 1 diabetes) are very good on facts and understanding where I'm coming from.

 

[hanadr]

Tulip
I stopped using Gliclazide a couple of years ago. Inever had a serious hypo on it, but didn't like its effect on me. particularlyweightgain. I was too heavy to start with and it kept getting worse.
I reduced my carbs to compensate for not having it and now my Bgs are better than ever.
It's horrid stuff
Hana

 

[kegstore]

Hey Tulip, I reckon it's worth trying out your DSN for listening skills, hopefully he/she will recommend someone to talk with if it's outside their area of expertise, or they really are that busy. Have to say mine is very good, but some of the stories you hear are shocking.

Counselling is also definitely an option - 2 of my friends are trained counsellors which is probably why I felt I had such good chats with them! I don't think it matters that you're a medical student, you're still a diabetic who has been through some nasty hypos and that will affect anyone.

Finally, is there a diabetes support group you could join locally? This place is great, but sometimes talking things through with someone face-to-face is hard to beat. I'm helping set up such a group here in Bristol, again your DSN may be able to point you in the right direction.