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Path of the Brittle Type 1: Gran Mal Seizures

You may or may not know that seizures can happen when your sugars are close to rock bottom. Symptoms of low sugars have changed for me over the years, but when I was young, and on a volatile insulin combination by necessity, they were harder to recognize and act on. Add to this different little classroom or social etiquette issues about just grabbing food when one is out. I've been through over 33 seizures in my lifetime. Some involved hospitalization afterwards, some I refused ambulatory transport. Fortunately for me, we were living in Ontario just before the major physician shortage for the majority of these, so cost of care didn't bankrupt the family, and I was also seen to in a timely manner for the most part.

Going into them has always been both scary and infuriating. Scary because I would often not come out unscathed, and infuriating because it was the physical realization that I screwed something up in what I ate, didn't eat, or when.

Each time I went into one, there would be risk of neural loss. The health workers always drilled me on basic things when I came too and fortunately I could answer right away most of the time. I know I've lost capacity through it all, but I was also fortunate enough to have a great capacity anyways. Also, because they were the more violent, Gran Mal type, I would inevitably have some sort of minor injury from the flailing before anyone could administer treatment. Sometimes it was just a bruise, others scrapes from pavement, sometimes cuts from plastic things, once my tongue fell in the wrong place and I clinched hard enough on it to injure the side, and once I required dental surgery to move one of my teeth back into position, after being pressed below the rest of them.


The shakes were the most tell-tale of the start of what was about to happen, but sometimes before that I could spot irritability in my attitude or getting cold and sweaty at the same time. The cusp of going down was always the worst, very dark time...

Over time I learned how to better spot the signs before it was too late, and had in place certain controls that enabled me to fix it all whenever it came about. The seizures were rare by the time I was leaving high school. I changed insulin types on a suggestion from a new specialist, and though my body refused to use one of the types when I was 4, it worked then.

Now I haven't gone into one for over 6 years. I still go into hypoglycemia every now and then. My system has come to the point that it will wake me in the middle of the night if my sugars are going too low, at which point I can go get food. I'm glad for that defense - I never want to experience this portion of my past again.
FluidMind FluidMind 31-35, M 34 Responses Dec 24, 2007

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I never new about the seizures wow,I did go into a coma once my sugar was 15.I have had diabetes since I was 17 now 49 on an insulin pump.I do a lot better with it.I new when I fell out I had nothing on wake up to my boyfriend 2 neigbors and 2 paramedics my first question before I looked down was do I hav e clothes on ( I did) thank god!Good luck too you!

My dad is diabetic. Ever since I can remember (since I was like 2) he's had siezures AT LEAST once a year. Usually more like once a month. Mostly in his sleep or before bed.. To the point where we knew the paramedics personally. I've woken up to him screaming and falling to the ground cracking his head on the table, my brother found him in his house unconscious after having one 2 days prior and nobody finding him. You name it we've seen it. He just can't seem to get his blood sugar under control. We try and try to tell him but he's a very proud man and I think he doesn't want to feel like he needs help doing everything. Now, after 16+ years of my brother and I experiencing this, I am overwhelmed with concern about him living alone. I got a call this morning from my brother saying he had another one, the school he works at called saying he didn't show up, and sure enough he found him half concious more in the seizure state, at his house after being there for who knows how long. I'm at such a loss, I don't even know what question I'm asking, anybody have any suggestions? Any thing would help. A nurse or somebody to watch him is out of the question.. I just want to know my dad is safe. I'm tired of wondering if I'm going to find him dead one day.

I think one pf my greatest motivation was I didn't want to be anyone's burden. The difference here is now that takes the form of not wanting to make others worry or have to witness the care of the paramedics, while it sounds like your dad was diagnosed later in life than I was and won't integrate any of the care steps I learned when I was a kid. What may help is expressing that his body is different now, and learning how not to be the burden he has become involves learning how it has changed, and how to take care of it, like a class.

I don't know how else to help. It sounds like this has been a very difficult journey for everyone involved. Remember he may become even more stubborn about it, as he may be feeling his mental capacity slipping away and doesn't want to admit it because of the pride you mentioned. Perhaps something else that might help is telling him that preventing further slips can only happen if he gets a handle on this. Careful with that one, though.

I hope for the best for you and your family. Take care, and I hope your dad sees the good in learning something new for the sale of his sons' wits.

yeah he was diagnosed when he was 18, hes now 60 when i was younger and living with him hes tried out different insulins but its always been the same.. he is losing alot of memory especially since the last episode. i will try telling him to look into taking a class but he really is not a people person and doesnt like going to things like that.. im not very involved with his life unfourtunately but i think i just need to get a doctor to convince him its life or death now but i just dont really kknow how to go about talking to his doctor. i just wish he would take care of himself -_-

Hi im 40 & have had type 1 diabetics for 10 years for about 2 years i was having seizures at night always with low blood sugars , while having a seizure i will always wake up & have to just wait until they finished , they are not nice one night i had 3 i was always by myself my doctor changed my insulin & have been seizure free since

Hi,<br />
Regarding the pump, is it really good, i asked, and was told, that i should control the amounts in injects in my body, so it is same as getting injections.<br />
I have been diabetic for 17 years, i am 32, and now i am getting Seizures more than anyone can handle i had 4 last week, i throw that insulin bottle away, but i am scared to death, and do not know if the pump will fix things for me..<br />
Thanks

All I can say was I was takeing 5-6 shots a day the pump helps me stay in control.They also have something that goes with the pump that checks your sugar all the time no more finger poking it also sounds an alarm if your sugar goes low.But of course my insurance doesn't cover it and its very expensive.I f you can try it what do you have to loose I am hear if u wanna chat anytime!Good luck

I been diabetic for 27 years and have had many seizures, recently I have started on an insulin pump and it has had a fantastic effect on keeping my BG stable, the hose and site attachment is a bit annoying but the effect on my stability is priceless. I wish I had done it sooner.

I am on a pump also I do a lot better saw a girl with another thing like a pump on her it checks her sugar all the time no more finger poking an alarm also sounds ir her sugar goes low,but my insurance doesn't cover it and its very costly!

I was on the same type of insulin once upon a time. I've switched to the Humulin equivalent of what you're taking now (I'm one of the weird ones that Novolog's products refuse to work on). I hadn't had a seizure in 10 years until one of the most stressful days in my life recently where I apparently forgot I'd already taken my Humalog for dinner that night and took a second shot of the same dose. I'm thinking that I need to really pursue cutting edge research in terms of a cure... After 26 years, enough is enough.

I have had type1 diabetes for 38 years, and can't begin to tell you how many times I have went into insulin shock and almost killed myself, or thew something that could injure someone. I would go nuts. I was taking Humulin R during the day, and Humulin N before bed. When I went into insulin shock, I would go into a seizure. My doctor put me on Novolog and Lantus 2 years ago, and that never happened since I've been on that new insulin. I still have low blood sugars at times, but I don't go off the wall when it happens. Diabetes effects everyone differently, so I'm not sure if this would work for you- maybe you should talk to the doctor about getting an insulin pump- that usually stabilizes you blood sugars. I know exactly what you're going though- and I hope that this will help you.

When I was younger, we lived in Winnipeg. The cold and wind I experienced while waiting for the school bus would often mean arriving at school with low sugars, and though my memory fails me now, may have contributed to the many siezures from my childhood. Cold climates can affect one's sugar levels adversely. However, something else strikes me about your comment. Not only was the climate different, but also the social environment, general activity level, diet, and insulin manufacturer.<br />
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Where I would start is with his endocrinologist to adjust the overnight dosing of his long-acting insulin, or perhaps even type of long-acting insulin. When I was diagnosed, nothing but a volatile mix of "short" and long acting insulins would work on my sugar levels, and to make matters worse, I rejected all but one brand. Siezures were a common occurrence, until my late teens when I switched types to a rapid and an alternate long-acting insulin. The siezures overnight virtually disappeared, but I had to track my meals more closely for the effects of the rapid insulin.<br />
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This should not substitute for consulting the endocrinologist, but questions to ask are: Does his night time insulin neeto be reduced? Is there a different combination of insulin types that might make his sugars more stable overnight? Should his diet be increased, or conversely should his diet in South America be examined for beneficial foods?<br />
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This is a complex issue and there isn't enough to say what the cause could be one way or the other, but I hope I've given you a good starting point for questions to ask. I hope you find the answers that lead to a reduction in seizures. Take care.

my son has had 6 seizures all together, 2 in dec of 09 and 2 in jan of 2010, the ones in dec were grand... the ones in jan you could call them mild, he mostly gets them between 3 and 7 in the mornings , <br />
he was gone to south america for 10 months and had nothing, however he has been home now for 3 weeks and already had one... i woke from the noise he was making...<br />
can there be something weather related or where we live... we do live in alberta near the rockies????<br />
i really would like to help him,,,

my son is 16 now, in dec of 2009 he had 2 seizures both grand mal type. in Jan 2010 he had another 2 but more mild. he always has them between 3 and 7 in the morning. he was in South America for 10 months and nothing happend. now he is home for 3 weeks and he had another one, (i woke up from it at 3:40 in the morning). he has type 1 diabetes, but does anyone know how much weather plays a facture in this deseas. <br />
or the enviroment? he was diagnosed in 2007.

Hasn't been any correlation I've heard of, so at best my contribution would be speculative. I hope they find what happened with your brother. Sounds like he's been through a terrible experience.

My 52 year old brother with type 1 diabetis since the age of 2- was taken to the hospital via ambulance today after having 2 seizures. Following the first he was given something to bring his blood-sugar level to a normal range- then had another. He had a total of 5 today. The news I received after an MRI was that he had a stroke(s). I've been researching "seizure/stroke/diabetis", but don't see the correlation. A neurologist will see him tomorrow.<br />
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He's very "brittle" with neuropathy involving digestion, feet, and brain.... Can anyone give me insight into the probable cause of seizures when blood levels were in the normal range?? Could it be a stroke with no stroke symptoms?

Hi, I have had Type1 diabetes for 37 years, and I don't know how many times I have went into Insulin shock, it has been too many to count. I went into DKA (hyperglycemia) 5 times. It is not fun having this disease. When I first got it, I was in grade school and the kids used to tease me and say to the other kids, "Stay away from her, you'll catch the disease she has!" Probably half of those kids who teased me back then have Type2 now, or know someone who does. However, everyone with this disease is different, and I changed insulin, and test my blood all the time, so I have been doing OK. I have tried an insulin pump, and I did not like it at all. It is now sitting in my garage gathering dust. I understand exactly how you feel, because the longer you have it, the worse it gets! Every doctor I go to has something different to tell me or ask me. One doctor will say, well, you have to do this- and then I go to another, and they say something completely different! Im just living the best way I can, and I try not to eat sweets (even though I LOVE them) and whatever happens, well, its GOD's will. I hope that you are safe and sound , because there is truly someone who understands what you're going through, and cares. Hope to talk to you soon.

Diabetes is partly about sugar levels and partly about energy levels. If we're spending too much fighting off fatigue, cold, illness, we may find ourselves running short for other things. I had similar problems with a physically demanding job when I was 16, and had to essentially shut down for a day when I got it off, because I simply did not have the energy to keep doing it otherwise. In your husband's case, make sure his sleep is deep and restful, and have him get a few more hours a night - the better rested he is, the less of his energy he'll have to spend moving himself when he's tired.<br />
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Diet is part of the puzzle too. Enough carbs to have energy for the night will be important, but so will proteins. Milk and cheese were the best insulator for me when I was young - and they also help fortify me for whatever work I had the coming day. The effect may take a while to build, but your husband should notice a difference in a few weeks at most.<br />
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The next time he goes to see his endocrinologist - ask about training. Don't be embarrassed about it, the Diabetes Associations in various countries can help, but the Endocrinologist may also know of some specialized materials, and be able to give guidance based on your husband's individual case.<br />
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If he doesn't have one, or hasn't gone in several years, talk to him about going to see one, if only so you can become better informed There is a lot to absorb about this condition, and you both will be better off if you've got as much knowledge about it as he does so you can help the next time. Hopefully there won't be a next time, but just in case. Much of what you'll hear is about preparation and making sure you carry certain things - ask detailed questions about insulin types versus types of sugar recommended. For instance when I was young, because of my insulin's behavior, only glucose was recommended if my sugars were low. I have more freedom of choice these days, but be sure to ask.<br />
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I hope this works out for you.

I am a newly wed and my husband has type 1 diabetes. This week I witnessed for the first time him having a seizure and it was the worst thing I have experienced. I felt so helpless. He hasn't had a seizure for two years, so it isn't frequent, but him working nights and 7 days a week is really having a toll on him. I was wondering if there is literature out there for diet for diabetes so that I could be more of a support and accountability for him. thanks.

I have had many seizures since I was diagnosed 30+ years ago, but only one since I got my insulin pump.<br />
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Feels like being run over by a truck, and then the driver comes out and kicks you in the head for good measure. I was very lucky that I was never alone when it happened. <br />
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It's a *****, but it's also kind of spiritual in a way. Just think, this is what they used to do to mentally ill people, on purpose!

Thanks for sharing, CaitlynBec. It doesn't sound related to diabetes, but migraines are no fun either.

I'm sixteen years old, i do not have Grand Maul, instead i have silent seizures.<br />
They go on in the brainwaves of my head, it causes migraine headaches that can last up to day and weeks, when i have them i cant go outside, i have to stay in the dark and in a quiet silent room. I started having these my 5 grade years.

Indeed it does, imstuckinhere. Although I must say the only time I experienced this down time after a seizure was when I refused ambulatory transport. Whatever happened at the hospitals the other times, be it properly treated to restore my fluids or what have you, I felt better after being in the hospital a day than when I didn't go with the paramedics. I'll research what I can on this aspect of it - I'd nearly forgotten about it - and hopefully have some info to help people after they've suffered a gran mal seizure without having to go through the extra expense.

being an epileptic, I can say that after a grand mal seizure, your body takes a week to rebuild strength...it is tired, litterally your muscles were over used and your brain, from the stress of your neurons all firing at the same time, is mushy and tired as well...a week to a week and a half you should feel quite crappy** hope this helps

Great info, 2Quirky! When I was younger,I had pondered why I hadn't heard anything about a device like this before. I'm glad it's out there, though kind of upset it's not being adopted. As your husband's case points out, it's not so simple to identify when you need to have eaten more, especially for new diabetics.

I've seen my husband have seizures from the lows. He JUST got a new Continuous Glucose Monitor---it's a new thing. He has to go get trained to use it, but you implant a little sensor that sends a signal to a little thingy (which is also used as a finger-stick BG tester) that will tell you continuously where you are... it also will sound an alarm or vibrate to warn you when you're getting too low or too high. Thank God!!! Not all insurance companies will approve these things & they're costly, however, I think they can save lives. He once crashed through a building in has car while low, and another time went into seizure in a swimming pool. Ask your endocrinologist---and good luck everyone!

Hi Keyna, I'm sorry to hear about your epilepsy. Though I don't need one these days, my parents would arrange for me to not be alone either because the seizures were from sugar drops that were both sudden and severe. I understand the needing a babysitter thing, and am sorry to hear the frequency of your seizures. Have you sought alternative medicine for them? There may not be much that can be done on that side, but were I in you're position, I'd be seeking all avenues that could possibly address the issue. Take care, Keyna.

I understand how you feel about the seizures, I have grand mal epilepsy, and have been having 1-3 seizures a week for almost 4 yrs now, and so far everything that the Dr.'s have tried hasn't worked. I am constantly hurting myself. The seizures have ruined my life, I can't work or drive a car anymore. I can't even go to the grocery store by myself for fear that I might have a seizure in the store. I'm 36yrs old and basically need a "babysitter". I know it's not the same as your seizures because I don't have diabetes, but I just wanted to share with you.

P.S. By "capacity" I do mean mental capacity. This is only at risk when you go under and into a seizure, though, the low periods don't present any practical risk otherwise, or so I've been told.

Thanks for commenting, weareallher.<br />
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What you're describing does sound like a mild case of hypoglycemia. If you want to get a better idea of how this is affecting you sugars day-to-day, I would recommend the TrueTrack glucose monitor, found at many pharmacies, mostly because the cost of their test strips is half what the rest of the industry is charging. Talk to your local pharmacist when buying the device for some advice on 'normal' ranges in your region (US and Canada use different measure standards, and if you're lucky you can find a machine that will readout in both). They may also have some more information for you, but do mention this to your GP.<br />
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Hope that helps, take care.

Thanks for the comment, shyici. Sorry to hear about your older brother's condition. It's unfortunate he got into that mindset, it really is going to be his ruin. As much as it sucks have to learn and do so much more about our condition personally, it will be even worse if we don't make the effort. I'm sorry you had to witness this decline in your brother. Does he also not acknowledge the family's displeasure with his attitude towards it? Maybe he got stuck in denial. I wonder if he has noticed how terrible he starts feeling after leaving the ER? Personally, having my sugars high or low is a definite beacon to me by how bad the symptoms make me physically feel.<br />
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I was very worried about my own condition a while back. Sometime after my 30th, I did some reflection and introspection and realized that some of my capacity had been diminished, despite that the doctors had said that there was no damage. I was a very prone to them by way of insulin mix (volatile, but the only one my body would accept back then) and metabolism. As I grew older, the frequency decreased, and I made it a point to never be caught blind-sided again. Switching of medication and a close eye on that for 2-3 years was enough to start me on this road. I'm glad I took the time back then - I'm not as vigilant about testing now, something that drive my new specialist up the wall, but I have worked this out from that transition period, and still maintain no auxiliary complications from diabetes - something few who are more vigilant can say after so long.<br />
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Thank you for your kind words. :) Maybe I will throw a celebration soon.

I'm so glad to hear you have been seizure free for so long now. My dad started having seizures last summer.. I was alone with him for his first one.. one of the scarriest experiences of my life. I was with him for one other and accompanied him in the ambulance. The two he had when he was with me were more localized, and he had two others when with my mom, and they were the grand mal type. It took him weeks to recover from the grand mals. As you know, the seizures were caused by brain cancer which he has gotten treatment for, and he hasn't had a seizure since last fall. I can't imagine what it must have been like for you growing up with this... I'm glad it is behind you now and I pray it stays that way.

It gets easier to deal with as time goes on. That's one thing I learned growing up in a family who had many ills all around. It taxes us in ways we never knew possible, but in the end, if we manage our ills well, we come out stronger people for it.

I am not diabetic, though my father is, but am pretty sure I have hypoglycemia instead. I've never experienced seizures from being to low but I have seen been well below 55 before. At that time the squares on the bathroom floor were moving on there own. Another time I was working all morning and started to notice a round spot in my vision about the size of a dime. By time I found a snack, under 3 min, the spot had turned into most of my frontal vision. It took a good 30 minutes for my sugar to come back up from that one. <br />
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Before I found the symptoms of hypoglycemia I really thought I was starting to lose my mind. Fortunately I had a friend who had the same symptoms and we searched together to find a cause to our problems. After cleaning up my diet I have felt far less crazy but it's still a constant battle everyday to keep my sugar levels up.