Anybody have much experience with waking up during a hypoglycemic seizure? I had another one last night, about the 5th one since it started a year and a half ago. Wake up in full body convulsions completely drenched in sweat knowing that something is wrong but not able to act on it until my liver dumps some sugar and lets me rebound enough to take action. I live alone and haven't talked to my family about this because it would scare the pants off them. It scares me. It scared my ex, he was present for the first two and told me if I took better care of myself this wouldn't happen. Nice guy. I have a CGM but out of supplies for it, top of my list to ask for more at my endo appt. In 2 weeks. So diabetic to diabetic, what are your thoughts or experiences? Oh btw, I am type 1 dx about 11 years ago. Brother and dad also type 1. I am currently on Apidra and Lantus shots. Thank you :-)

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I to have had niteime hypos even with the pump. Iv been Type 1 since age of 3 I am now 49. Luckily I have no problem falling back to sleep. I do not use the CGM since I had problems with that so I check my BS 6 to 8 times a day (midnight,4am,6am,10am,3pm,8pm. I keep all types of food nearby in cas im low or just suspend pump if real low. Going up and down steps were problem if I had to go to kitchen since I also have Multiple sclerosis (MS). I was married but wife walked out on me after finding me hypo when she came home from work. My grandmother was type 1 and dad is type 2. My mother dosn't understand how diabetes has changed over the years she still acts the old school was.

Boy I would tell my family since they are diabetic too.
Don't think you have do this alone.
Call your endo and have him/her call a script in for supplies NOW.
If its randoom haed to figure out.
CGM can help.
Tell yourself before you go to bed that you will wake up if you get low.
put some juice next to the bed so its easy to get to.
I have had a lot of these 40 years T1 strong not dead yet!
I would lower the Lantus and give a bolus in the morning if high and lower any bolus at bed time or don't give a bolus at bed time.
Just me thinking.
Hope you do better we have all been there.

Hi, thanks for sharing :-) I just think it's easier not sharing with my family. I didn't say it earlier but my dad is gone, passed away 7 years ago from complications of T1. My brother would likely lecture me. My mom would worry incessantly. I don't need any of that just someone to listen and give their input if they want. I've tried switching lantus to AM but my sugars go sky high no matter what I do. I have reduced my lantus once and now more since I just started exercising again. Problem last night is I ate later than I should have and then bolused like it was middle of day not bedtime. Seems in the last year or so my correction factor has decreased especiallybefore bed. I hate hate hate waking up high but I guess that's a better risk than not waking up at all. Plus I had a killer throbbing headache I couldnt shake and felt like crud all day. I hate the lucid low BG dreams too..in .the one last night I could feel it coming on just couldnt wake up in time. I will try that telling myself to wake up if low, I do keep juice and glucose tabs next to bed. Thanks!

I'm 44 and have been a T1 since I was 13. I've had more seizures than I can count (but guessing maybe around 30). I went on the pump almost 9 years ago and in that time I've "only" had 2. The pump made a huge difference in keeping those things at bay, so if you're able to consider it, I would highly recommend it. Freedom from clocks, the ability to eat when and IF I want to..I could go on and on about how much more wonderful pumps are over shots. But to your question, not once have I actually been conscious during a seizure. I can't imagine what that must be like, but I think it's actually pretty fortunate that's happened to you (I always try to look at the bright side), since you live alone! I agree with others who have said to try to tell yourself to wake up if you're low. I think our bodies go into survival mode when necessary and we just do what needs to be done. In fact, I woke up in the middle of the night last night and was 39. I woke up and felt hungry, which got me right up and to the OJ! So get those CGM supplies fast and if possible, really think about the pump. The ability to get your sugars under good control is so much easier (well, it's never "easy" but still). My last A1C was 5.1 and I've been in the 5's for years now. Anyway, do keep us updated and hoping seizures become a thing of the past!

Hello, I'm 42yrs old, and have been T1 for about 22yrs. I've been dealing with hypo gran mal seizures for about five years now. I've broken many bones, received many stitches, etc. during these seizures and the falls and tumbles I've dealt with during these seizures. I was having these seizures monthly day and night and finally got a Dexcom CGM and a Omnipod Pump about a year ago through my Medicaid insurance.

I live alone, as well, and in NYC so am not sure how/if payable where you live and insurance you have. But I must say that it's been 5 months since my last seizure so I'm happy and grateful thus far. I hear the next generation of my CGM (Dexcom) will be 35 percent more accurate for readings in the hypo range. so I'm looking forward to this.

My only suggestion for now, is to set you Hypo alarm for your CGM at a higher number (mine was set for 80 but by that time, my sinking level was too late to be rational enough to correct the problem with fast acting glucose, or juice, which I did keep by the bed) So, I raised my alarm level to 100 which gave me a cushion in time to deal with my hypo levels. I can't tell you enough as to how much I can't stand the way I feel during hypo's; the malaise and general confusion and feeling of helplessness.

Don't expect overnight miracles in your a1c numbers. Mine are now in the 9's but a year ago they were in the 11's. They are still relatively high, but better. I believe once I am less worried about having the seizures I will be better able to walk the tightrope needed to lower my a1c's further. For now though I am truly grateful I'm not having these seizures, and am in better control of my bg numbers. Sorry for rambling but hope you got something from this.

john

Don't care what the worthless technology is, UNLESS it is closed-loop, can ACT while trying to "warn" us... its horribly useless. Unless it wakes you, LONG before you free fall and seize... its worthless for you or anybody else (i.e. can't wake up, am seizing, the warning is worthless unless it does something else useful re: BG while its trying to warn us)! Will never be a fan.

Agree 100%, no family in this conversation. That being said which of the two of them would have you back if you told them? We can understand, they can see your eyes, help you more perhaps because they are there, in person.

Look there are all kinds of reasons to get dangerous low, but every single one (short of parallel health problems) guarantee there was too much insulin on-board, period. All kinds of potential ways that gets achieved, but bottom-line, end of the story, its simply too much for some reason, period. Any idea what the source of that excess is?

Oh and for the record, even the most adoring, deeply in love, genuine lover.... at times, can't handle this stuff. As a diabetic I won't be thrown, as a diabetic you wouldn't be either if your partner was a diabetic and had the same seizures. You'd act THEN be pissed, cry, freak out... but action would be first.

It is EASY for someone not diabetic to find simplistic answers. Something that makes them feel "better", safe to answer these complex problems. You, or I know better. But for them, the pump is the perfect answer, the numbers generated by our meters, for them once we use them, mean its all ideal/perfect, and nothing bad will ever happen to us again. TO them the technology seems to cure the disease

Its laughable, but that doesn't stop them. They need to believe we'll be "ok" and there will be a "happily ever after" to our diabetes story. False belief makes them feel safe.

======
My short answer cut back the insulin, until you can identify what factor(s) caused the issue. Shot too much at bed? Over dosed with dinner? Exercise that bit you in the butt and caused you to drop in the middle fo the night? Whats yous assessment, what caused the crash...

Find that answer(s), and you can go backwards and THEN look at the accusation he raised. First starters make damn sure it just does not happen again!

First I agree with others cut back on the insulin and find a new endo.. I had to mine was one of the best in the area but he had me dropping to 30's at night and would not listen even to his diabetic nurse. My neuro. referred me to another endo. with a new direction on treating Type 1's put me on the Dexcom immediatily my A1C had been 6 for 11/2 he said it might increase but their is aim is for more steady levels-no peaks and valleys. This is my first month the Dexcom is wonderful my dog has not woken me from seizures, I'm also epileptic and being alone 98% of the time my husband travels the 30's could certainly cause night seizures. Get your supplies and always have extra to be safe get funding if needed or ask your doctor for supplies they often have samples. When it comes to talking to your family try a support group at a hospital near you or stay active here on line their are so many wonderful people, reach out as you have but their are other options.
Best wishes to you.

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