Convulsions & Delay Reaction to Insulin

[Moondancer]

Hello, new to the board. I was hoping to find info on diabetic convulsions. My DH has had T1 for over 30 years. He's otherwise very healthy. I've known him 4 years... the last 18 months or so we have seen changes for the worse. He often has low sugar over night and the last 6 months he has had convulsions almost every time. For a while it was 3 times a week. He's on a pump, which has been adjusted to try and prevent this low sugar over night. He also sometimes has very high sugar (300+) just before going to bed (and often there is no reason for the high sugar as he has not eaten anything for hours). He takes takes insulin but after 90 or more minutes his sugar is still very high so he takes more. Hours later is when the low episodes happen, ususally around 5 AM, long after it's supposed to peak. There seems to be a 4 hour delay of when insulin lowers his sugar. Like this evening he took 17 units at 11:15 PM when his sugar was over 500 and at 12:45 his sugar was still over 500! He called the Dr who said take 10 more units which he did at 1:10. It's 2 AM and it's 280 so it is finally coming down but we are expecing an episode at 5 AM. I've learned to sleep light and am able to tell when he's in trouble. Until recently I would shake him to wake him, ask if he needs juice and he would know he needed it. Now I ask and he says he fine, I check for sweat and/or watch for a few seconds and see that he is not fine. He used to not remember when he had the convulsions, now he's aware when they happen, even sits up in bed though I ask him not to. Last night he got up and walked around toward the end (!!) The convulsions always last 10 minutes - I start watching the clock after he's had the juice. I thankfully have been able to get 1 to 2 juices (small sunny delights) in him before the convulsions start. I have called 911 several times but by the time they get here, he's alert and on the way to being fine so now I do not typically call them... just wait out the 10 minutes. He tests a lot and counts the carbs. We just don't understand these highs for no reason and the delayed insulin reactions. We know stress is a factor and he is selfemployed which is stressful. Any suggestions are appreciated. Thank you in advance.

[Jen Jen]

Any changes in insulin, such as brand(Humalog, Novolog, or Apidra)? I have issues with certain brands(Novolog), each one is a different insulin, just similar results in action in *most* people. Has he gained a few extra pounds? That can sometimes cause problems. Insulin resistance is another possible explaination. Has his thyroid been checked? Might be good to push him into going to his doc and having bloodwork done.

[Moondancer]

Thank you for your response Jen Jen. He's been on Novolog for as long as I have know him - 4 yrs. I think he changed because the other no longer worked well for him. He has his blood checked 2 to 3 times a year. I know it should be at least 4 times but he has a fear of needles... yes, needles. He can obviously give himself injections and put in the set for his pump but to have someone else stick him in a vein is something different - at least for him! I don't know if they check for thyroid issues. I'll follow up on that. He has gained some weight but is still thin. I don't think a 36" waist for a man almost 5'11" is by any means overweight. He has not been told by Dr to lose weight. I went to his last appt with the NP at his endo office just a couple months ago. He rarely sees the Dr but is in contanct with the NP via phone and email often. I suggested he see Dr that is willing/able to see him in person. He said the Dr is the best in our area and when he gets sick he wants him to be his Dr. My argument is that a HUGE part of being a Dr is to prevent people from being sick! I lose that argument. Anyway, they do not offer much advice for the convulsions... claim he can not be aware that he is having them. I beg to differ... he often speaks to me during the convulsions and later tells he how he felt. The NP said to go see a nurologist. He has an appt in April. Oh, he also was on Wellbutrin (sp?) for clinical depression related to dibetes. He learned it could cause convulsions so he weaned off them and they did subside a lot but they still happen. Last night we averted them and low sugar by staying up til 4 am and checking his sugar every hour. Not a long term solution. The Dr on call last night said he should ask his endo about a faster acting insulin. We had never heard of such insulin. Thanks again Jen Jen. Really appreciate your suggestions and will check out the thyroid. I'll do some research on resistace too. The NP really only said that when the numbers are as high as he sometimes has it takes more insulin to lower it. Whatever that means? How much more? I know it's all different for every person.

[Jen Jen]

I don't blame him for being wary of those darn nurses that draw blood, they can be mean and spiteful. I've had to draw my own blood a few times, it's not impossible and I don't suggest it, but I have.

He may want to try another insulin, I avoid Novolog at all costs cause I either can't come down, crash hard, or feel just deathy ill from it. I took it for years just fine, it would be my preferred due to price, but I feel so bad with it now, I can't. It sounds like the Dr on call last night may have been confusing the Novolog for Novolin(R), they are quite different. Out of the three rapids, I'd recommend having him try Apidra. It's the newest, but weight does not affect it as it does the others, even a pound can have you altering your basals and such.

My theory on the convulsions might be half the Welbutrin(I don't agree with antidepressants for the most part) and half the lows. When you have a low sugar, your body, regardless of D status, will still react the same and release glucose. If you crash frequently you will not have anything in those stores, the body needs ample time to replenish. The body usually will also respond with highs after crashes, for a good day or two for just one low. I'd back off the insulin at night when he's dosing(or rather, not double dose per NP's orders). Being high is a ***** but lows are worse IMO, but something is going on at night and the insulin is stacking all at once. He might be staying high in the evenings because his body has fallen into this pattern, and it's trying to protect itself, or it's the insulin. Fat pockets can prevent insulin from absorbing right away(especially if same areas are used repeatedly), even if you don't think they're there, they can be. It's a way the body protects itself, insulin is pretty nasty stuff.

Blood work should be done on a regular basis, even though I am one of the worst about it. Liver, kidneys, thyroid... it can all affect the D if just one is not working quite right. Also, potassium levels need to be checked. He may be severely deficient due to the insulin, it's a problem they've known about for years about the synthetics. I'd recommend getting him a multivitamin, or change your table salt for the alternative, which is potassium chloride, Kidney functions must be checked beforehand though. Diabetics usually have problems with low potassium, but Drs usually disregard it when it comes to treatment. Potassium is one of those finicky things, you need to stay on top of it and not OD either. Not enough you can have a heart attack, too much you can have a heart attack. Poor kidney function, which often goes hand in hand with D, can cause elevated potassium levels, or the inability to metabolise the potassium properly. So thus the reason they often neglect treatment of low potassium, even though treatments have improved for D and we're healthier. It's a valid concern, but can be dealt with in diet and suppliments, unless it's extremely severe.

Welbutrin will take time to get out of his system completely. I believe it's a full two weeks or more with Welbutrin.

[Moondancer]

Wow, thanks again for all the info. I can't tell you how much research I have done and some of the possibilities and information you mentioned were never in anything I read. I will add potassium levels to my/our list of things to check and research. He hates bananas. He does take a multivitamin. I "made" him get his kidney's checked about 2 years ago. He had many of the "milder" symptoms... too many to ignore. They were fine though. Since he got health insurance I've been asking him to get it checked again.

We had heard of the fat pockets before. He changes the site around but admittedly not as often as he should have, until recently. He was keeping the set in longer than recommended to save $ because he was paying for everything out of pocket. He got fantastic insurance in Auguast so since then he changes along the lines of what's recommended.

I think the Welbutrin was part of it... these convulsions started very regular after being on it for a while. I think he only convulsed one or two times in the 3 1/2 years I knew him before the Welbutrin. He's been off it long enough for it to be out of his system but ever since, he convulses almost every time he has extreme lows overnight - it's almost odd if he doesn't. It's difficult to ignore the coincidence. I, however, do not doubt the lows being a factor. Thanks for the detailed explanation of that.

Thanks again.

[Jen Jen]

Actually, bananas are not the richest food in potassium, it has high levels, but I believe potatoes hold more. Potassium info is out there, it's just hard to find unless you are more specific. Just another tidbit about potassium... Low potassium can also cause BG problems in non-Ds(glucose intolerance), due to insulin production requiring potassium for one of the channels(two channels, the other utilizes calcium). Also, the major, most common, cause of osteoperosis is potassium deficiency.

The reason I really do not agree with antidepressants is because a doc pushed them on me. I complained about being tired all the time(wasn't depressed by all means, just tired), they stuck me on Zoloft, I still feel the affects of it, though they're not as intense as they were at first. I believe they can cause last affects, it may be something he may have to contend with for a while. First thing he needs to do though is get the lows under control, which may seem a near impossible feat, but keeping at it and trying different strategies, something will work.

Since he has health insurance now, definitely push him, make him take advantage of it. Health insurance is a pain while dealing with them on certain issues(*cough*UHC*cough*), but it's well worth it all.

[Mama Belle]

A couple of things: have you checked his BG during a convulsion to make sure that it is related to Diabetes? If his doc wants for him to go to a neurologist, this would be valuable information to have on hand. Also, has you husband's doctor given a prescription for glucagon? If he is having a convulsion, glucagon is the fastest way out (no need to call 911).

My dad suddenly became unaware of his night-time lows when he was started on effexor. He switched to zoloft and has been fine ever since. I think some anti-depressants can definitely cause issues with folks who have diabetes.

[Moondancer]

Jen Jen - I find your comments on depression/tiredness/potassium very interesting. K told the NP that he was tired all the time... she said (and other Drs, not just is endo, concurred) that it was clinical depression from dealing with D for over 30 years. He told her that he did not feel depressed or hopeless, just tired and no energy.

Momma Belle - thank you for your response. I have not tried to test him while he's convulsing. I'm not certain I would be able to without really, forcibly restraining an arm. Both arms and legs jerk uncontrollably and it involves his torso too... he sort of does crunches with his stomach and his arm and legs (and neck and head usually) are extended in air, off the surface of the bed and then they all jerk back down toward the bed in unison. These are not small movements or twitches. He often complains the next day or two about his body/muscles hurting (like they would from over exertion). I will definitely try to if the convulsions are not severe and I feel I won't hurt him. I would like to have that info for his appointment with neuro. I do not test when I first know there is a problem because I know what's coming and I want to get sugar into him ASAP. There were two occasions in early evening hours where he was wide awake when it happened. He felt it coming on and tested in the low 30's one of the times - don't recall the other. Usually right after an episode we test and he is low like maybe 55-60 but that is at least 10 + minutes after having up to 2 sunny delights. (God, I hope they never stop making those in the individual serving sizes!) We do have the glucagon. I have not used it because I was told that if the person is able, to give them something orally. So far I have caught it early enough to give him juice. I thought I was supposed to use the glucagon if he were unresponsive or in our case already convulsing - though I'd hate to have to use a needle during convulsions! So, if I go straight for the glucagon, it will hopfully stop the convulsions quicker? I will see if he is OK with this - I think he will be.

Thanks again for your responses. I really appreciate it.

[rickst29]

The RIGHT thing to do would be to always treat as if low bG is present- 15-20 grams, right away.

Then, shortly AFTER he comes out of it you/he do a test. If he's now 160 or even more, then his bG was OK earlier, and EEG workup is probably needed. But if it shows only 80 or 100 (or LESS :eek: ) after all that sugar or juice, then he was definitely hypo.

You should, I think, get friendly with a STRONG neighbor guy, who can come over (even in the dead of night, it's an emergency and doesn't happen very often). He holds the convulsing and combative husband while you stick that Glucagon into hubby's thigh.
- - - - -

We used to do this SEVERAL (like, MORE than 8) times per year at my house. (For many, many years.) I now wear a CGMS, haven't needed a Glucagon or my neighbor to come over and fight with me since putting it on. Document every occurrence of extreme low bG, you will need documentation if you want to fight for insurance coverage on the CGMS Sensors or Devices.

And yes, Glucagon is faster and more certain to recover a sub-40 low.

[Moondancer]

Thank you for your reply Rickst29. I would always treat as if he's low first then go from there. He had another episode this morning but the convulsions were fairly mild in comparison to the past. I gave him 2 Sunny Ds and about 5 to 6 min into the convulsions we did a test and he was 56. We were surprised how "high" the bG was considering his reaction. I have read somewhere that if you drop quickly you can have a reaction even though the levels are not that low. Maybe that was the case here. There is just no rhyme or reason with this disease.

I'm glad to hear the CGMS is working well for you. My DH just got a new pump in the fall... I doubt the insurance he has (even though very good to diabetics) will pay for a CGMS anytime soon. I have talked to him about keeping a log as you suggested for insurance purposes.

[rickst29]

I pay cash for my Sensors, but I'm quite lucky (they last a really long time for me) and I only need to spend about $70 per month.

I don't know if the sugar in Sunny Delight is mostly table sugar, or mostly high-fructose corn syrup. Either way, though, it comes on slower than REAL glucose/dextrose does. (Sugar tabs are more expensive and he needs to chew them. Glucose Gel is even more expensive than the Tabs, but comes on really fast.)

I'm glad to hear that you more-or-less confirmed (again) that he's DEFINITELY low when this happens. Maybe it would be a good idea to back off his pump basal amounts during the period 2-4 hours previous to these events? If they nearly always happen in the pre-waking AM hours, it would be safer to wake up a little bit higher, I think.

[Moondancer]

I have used the dextros/glucose in the tubes in the past a few times when he was mostly out of it and could not drink anything. I don't know how well they would have worked on their own as those were times when 911 came since I had no way of knowing how much he really got and it was when this situation was new to me. It's been quite a while since he's been that out of it. I will try those next time to see if it's quicker. We also buy the gel cake icing in tubes as recommended by the NP. Are they just as good as the dextros tubes?

He has adjusted his overnight basal amounts 3 or 4 times. It helped a lot for a while. He was waking up a bit high but that was better. Something seems to have changed the last two weeks.

Thanks again.

[audreish]

Moondancer, I am new here as well. I just wanted to share with you my experience. My DH had the occasional convulsion before he started pumping. The final one was so bad - we had just moved into a new apartment, I was at work all day and he was unemployed at the time. He spent all day unpacking, hanging pics, and completely neglected the eating thing. I came home to find him on the bed, blood pouring out of his mouth, and unconscious. I screamed and cried and called 911. While waiting for the paramedics I discovered that the blood was because he had bitten his tongue while convulsing and his bottom teeth gave way. Luckily this was better than the other possibilities that were going through my head. He woke up before the ambulance came and I could tell he was low - but not nearly as low as I had seen him before. The paramedics tested him as soon as they arrived... he was at 62 - much higher than his lowest lows. He was on the pump 2 weeks later!

After much research and learning what life could be like on the pump we've decided it was the crash - not the actual sugar level that caused the convulsion. He was always high - usually over 200 - so dropping from there to 62 was drastic even though 62 is not super-low. If your DH is experiencing drastic highs, giving a large correction bolus, remaining high, correcting again, and then crashing hours later and convulsing it sounds like the same kind of thing. Add to that the wellbutrin and the stress... What I'm getting at is even if you test (or give sugar and test later) and it is somewhat normal don't discount the blood sugars as the cause. I would really look into other insulin. And this sounds like a stupid question - but is he changing his infusion sites regularly?? My DH used to always give his shots in the same place, on the same leg, and had so much build-up there that the insulin took FOREVER to take effect, even with fast-acting.

Good luck, and keep an eye on him!! :-)

[Momof4gr8kids]

Thank you for your response Jen Jen. He's been on Novolog for as long as I have know him - 4 yrs. I think he changed because the other no longer worked well for him. He has his blood checked 2 to 3 times a year. I know it should be at least 4 times but he has a fear of needles... yes, needles. He can obviously give himself injections and put in the set for his pump but to have someone else stick him in a vein is something different - at least for him! I don't know if they check for thyroid issues. I'll follow up on that. He has gained some weight but is still thin. I don't think a 36" waist for a man almost 5'11" is by any means overweight. He has not been told by Dr to lose weight. I went to his last appt with the NP at his endo office just a couple months ago. He rarely sees the Dr but is in contanct with the NP via phone and email often. I suggested he see Dr that is willing/able to see him in person. He said the Dr is the best in our area and when he gets sick he wants him to be his Dr. My argument is that a HUGE part of being a Dr is to prevent people from being sick! I lose that argument. Anyway, they do not offer much advice for the convulsions... claim he can not be aware that he is having them. I beg to differ... he often speaks to me during the convulsions and later tells he how he felt. The NP said to go see a nurologist. He has an appt in April. Oh, he also was on Wellbutrin (sp?) for clinical depression related to dibetes. He learned it could cause convulsions so he weaned off them and they did subside a lot but they still happen. Last night we averted them and low sugar by staying up til 4 am and checking his sugar every hour. Not a long term solution. The Dr on call last night said he should ask his endo about a faster acting insulin. We had never heard of such insulin. Thanks again Jen Jen. Really appreciate your suggestions and will check out the thyroid. I'll do some research on resistace too. The NP really only said that when the numbers are as high as he sometimes has it takes more insulin to lower it. Whatever that means? How much more? I know it's all different for every person.

Moon dancer, Sounds like some scary stuff. Dark corn syrup is better the light corn syrup. It has 45g of carbs per 2 table spoons.

I think these are definately sireous symptoms, but by the way you describe them they cannot be seizures. If both sides of his body are shaking the both sides of his brain are effected totally. He would not be able to talk. Take that as good news. Maybe his brain isn't being effected. 10 minutes of strait seizing daily, or almost daily would more then likely cause noticeable brain damage. Hopefully the nero can get to the bottom of this so that he doesn't have to go through this anymore, and neither do you.

As far as his insulin is concerned,since he knows now that it wont bring him down for many hours, and that if he gives more he will go low enough to cause potental brain damage I'd wait out the high until the insulin kicks in, and then check 4-6 hrs post high and correct again if needed. Running high for that long isn't great, but it is much better then risking the complications from a bad low. Our endo put it this way. They can reasonably treat complications from highs, but where the brain is concerned they can do nothing to correct the damage done to it by bad lows, seizures, and comas.
Best of luck to both of you. Please keep us updated. Jamie

[Moondancer]

Audreish - Wow! That must have been scary! I'm glad things turned out OK. Seeing blood had to freek you out more that a little bit. Thanks for your reply. When we moved just over 2 years ago he had a crash that night. The ER people were a bit confused to see us in a new home! They were like "Didn't you used to be on Main Steet? Not good when the 911 crew recognize you! I have read that a fast drop can cause hypo symptoms even when the person is not really low. Or even just normal sugars can cause hypo feelings in someone used to having high bg's. I also have learned that the body will create its own glucose by using protien in the body's muscles as the energy source. Scary to think the body is "eating" itself.

Jamie - thanks for the info on seizures and the syrup. I appreciate it. The seizure info is especially interesting. Will look more into that before the April appointment with Neuro. I have recently read that insulin stays in the system for 5-6 hours even though his is supposed to peek at around 90 minutes. We discussed this and I suggested he wait to take more but what he's been told to do and what I'm reading are clashing. Since I did not go to medical school, I lose! I do understand how he would feel this way.

He's only had 2 episodes (I think) since that real bad week to 10 days we had recently and these last two were not at all severe. Just some arm or leg jerking now and then and that only lasted a minute or two. I'm hoping whatever the Wellbutrin did is finally on its way out, if that is what contributed to the convulsions.

I have been on a mission to find info on D for the last 2 - 3 weeks and have learned so much. I know more about D now than he does! We have an appointment with his Endo within a weeks time to talk over some changes that we hope will result in better control so these massive doses are not needed. He does change the site but just to another area on the stomach. We have noticed that his stomach area is larger than it was a year or so ago (but not so much the rest of him) I suspect due to the pumping for 7-8 years and in part to some weight gain. Both of these can result in insulin resistance as can the high bg's themselves. We have talked about moving the site to thigh or butt area but he has yet to do that. I'm not sure why. I wish he would try it once and see if there is any difference. I can only suggest, share what I've learned and let him make the decisions.

Thanks for all the support. It does not go unappreciated.