Seizures

Type 1 and LADA
1

In the Facebook Joslin medalist group someone asked if any of us had experienced seizures due to low blood sugar. Every medalist had been type 1 for at least 50 years, and most of the 53 replies given indicated there had been no seizures. Only a few said they had experienced seizures.

I always thought that a low that caused unconsciousness, with difficulty in being revived, was a seizure. Some medalists were saying that unconsciousness with a low is not a seizure, even if glucagon or a trip to the ER is involved. I began thinking I did not know the true definition of "seizure".

How do you define a seizure? I found the following definition of seizure on Google:

"Seizure: Uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, thought disturbances, or a combination of symptoms.The type of symptoms and seizures depend on where the abnormal electrical activity takes place in the brain, what its cause is, and such factors as the patient's age and general state of health.

Seizures can be caused by head injuries, brain tumors, lead poisoning, maldevelopment of the brain, genetic and infectious illnesses, and fevers. In fully half of the patients with seizures, no cause can yet be found."

One medalist said she had many seizures when she was very young. She fought and bit her tongue, and lost part of her tongue with the biting. A few medalists have had seizures with terrible convulsions. Most medalists have not had seizures in light of the definition given.

During my first 60 years with type 1, I had at least 200 episodes with unconsciousness and difficulty in being revived, but I never had convulsions or needed to be restrained, so I conclude that I have never had a seizure. After starting pumping in 2007, I have not needed assistance with a low.

Have any of you reading this post had seizures? If so, were they long ago, or do you still have them? This may be a very personal question, so I understand if you do not want to reply.

2

I've had seizures, but they weren't caused by low blood sugar. I have passed out from low blood sugar once, and had numerous other times where I was not aware of my surroundings and needed assistance but not truly unconscious.

Between the ages of 8 and 12 I had four, possibly five, seizures. If I'd had one more seizure as a kid I would have been diagnosed with epilepsy, but I never had that final seizure.

The first time was when I whacked my knee on the edge of an open drawer - don't ask me how that would trigger a seizure, but a friend witnessed me lose consciousness, walk across the room, and then collapse and start convulsing on the ground. I don't remember any of it other than my knee hurting and then waking up with my friend starting at me in bewilderment. My mom didn't really think a lot of it other than mentioning it to my doctor at the next appointment.

A while later I was sitting at my desk in my grade 3 classroom when I suddenly felt like I was going to be sick. Next thing my teacher heard a chair scrape back and turned around to find me unconscious, and when they tried to move me I kept stiffening up (but I wasn't actually convulsing). No memory of anything except suddenly gaining consciousness sitting in a chair at the back of the classroom surrounded by my teacher, a teaching assistant, and the principal. They didn't call 911 for that one but my mom came to the school and drove me to emergency to get checked out.

In grade 4 I was diagnosed with Type 1. Hence why we don't think the seizures were connected to diabetes.

In grade 6 I was using a playground swing when I suddenly, for some unknown reason that may have been a seizure, I let go of the swing and went flying. I do have a memory of flying through the air seeing this sort of madly spinning kaleidoscope and praying that I wouldn't die, but I have no memory of letting go of the swing or of landing. That one resulted in 911 and paramedics and an ambulance ride.

In grade 7 I was in church when I suddenly felt like I was going to be sick, turned to my mom and started to tell her I didn't feel well, and lost consciousness in mid-sentence. Like grade 3, I kept stiffening up as my dad carried me outside, but no convulsions, and I woke up pretty quickly from that one. My BG was not low when we checked it.

Three weeks later I was in the middle of eating breakfast when I suddenly called out to my mom that I couldn't see. She came running over and then I lost consciousness and was apparently on the kitchen floor doing the stiffening-up thing. The weird part about this one is that I wasn't fully unconscious - I couldn't feel, see, speak, or move, but I could hear my mom call out to my dad to call 911 and could hear my mom and dad yelling back and forth as the person on the phone asked questions. By the time the paramedics arrived I had come to, and my BG was not low, so my parents drove me to emergency.

Then there were many, meany years of peace.

About a year and a half ago I woke up in the middle of the night feeling terrible and thought I was going to be sick to my stomach. Instead I checked my BG (which was not low), sat down on the couch and was about to check my BP because I felt so horrible when I lost consciousness and then came around very gradually about five minutes later. No one was around to see what actually happened, but given my history of seizures the doctor at emergency said if anything similar happens again then it's something that should probably be looked into.

So that's my story of seizures. Each one was weird and different, even from my perspective and certainly from the perspective of people who witnessed it. I don't know if a seizure due to a low BG would be different or similar to seizures caused by the brain going haywire for other reasons.

3

Thanks, Jen, that is a very interesting history. I am so glad you are doing so much better now, and I hope you never have another seizure.

4

I hope so, too! It was a medical issue I had all but forgotten about until that episode a year and a half ago. Thankfully haven't had anything resembling that since.

5

I'm one of the fortunate ones. I've had T1 since 1961 & I've never had a seizure due to low BG. I've never been unconscious, a few times I've been unaware of my surroundings but recovered when my husband fed me glucose tablets, in fact I've never been to the ER due to a low BG. Twice I've been unconscious due to high BG, 1st time I had pneumonia 2nd time I was in hospital trying to fast for a biopsy for celiac test, so I think they don't count. I think I am lucky as until 1980s I didn't really pay that much attention to T1, apart from taking insulin.

6

I also have had very few episodes of losing consciousness due to hypoglycemia, just 3 in 46 years type 1, as far as I can recall.. I was told that I had what "looked like a seizure" while a friend was driving me to the hospital for a low blood sugar. I was unconscious by the time she got me to the ER.. so I remember very little. I guess I can say that is the one and only time I have had seizure like symptoms due to hypoglycemia. It was about 12 years ago.

God Bless,
Brunetta

7

I have been T1 43 years and have had a few seizures related to low BG (20-30 range). My symptoms included muscle spasms where opposing muscles both contract at the same time leaving me on the floor twisted into a pretzel. One time the seizure included facial muscles so that I could not talk - just howl.

They seem to have happened when I was experiencing very rapid BG drop. The last, and worst episode was about 4 years ago. I was 90 when I left work but felt strange on the way home 15 minutes later. Pulled of the road and tested - 54. Called my wife and daughter because I did not think it safe to drive. Got home 10 minutes later, bingo a seizure. They tested me at 24 while calling 911.

Unfortunately, I hate the glucagon kit and never think of it before it is too late because by the time I recognize that I need it I can no longer do the ritual by myself.

Fortunately, these events are very rare. I used to ride the glucoaster and would routinely over correct a high. Stuff I have learned here has helped my tremendously.

8

I had a "seizure" once due to hypoglycemia shortly after I was first diagnosed 30 years ago. I was fifteen years old, hospitalized, started on seizure meds and got my learners permit taken away.
I eventually stopped taking the meds because I knew it blood sugar related and got my drivers license after a year of being "seizure" free.
I haven't had any more seizures but a few episodes of unconsciousness with lows that required 911 calls by my family.

9

A lot of people talk about getting the "shakes". When are the "shakes" really seizure? When your arms other muscles are jumping (and there's no music playing) and you can't control it isn't that really a low grade seizure (no passing out required). Then you treat it and your brain gets enough sugar and your shaking (seizure) stops. If you talk about getting the "shakes" then I think you geta lot of people saying yeah dude.

10

To me shaking with a low is more like trembling - the same thing that happens when you're really nervous and your body puts out a bunch of adrenaline. In fact I think it's exactly the same cause, as your body released adrenaline during a low as well.

11

Did you ever get the shakes so bad your arms will jump around like 6 inches and you can't stop it when your sugars low. That used to happen to me when my sugar was real low (30's). Hasn't happend since I stopped goin so far down the rathole. Hard to keep a rhythm, but you get some crazy beats.

12

Yes, I have had on occasion the seizure-like stuff with arms and legs when my bg was in the 30's. That is much more huge than the simple "adrenaline shakes" which can occur at much more moderate (even just 60's) bg.

13

Nope, I haven't had that. I did have one low when I was a kid where I couldn't move my eyes properly (like they wouldn't go in the direction I wanted to look), and another where I couldn't talk no matter how hard I tried, but neither of these was really shaking or twitching, more like my muscles just wouldn't respond to my brain.

Usually I don't get shaky with lows, either, at least not until I'm down at 45 or below.

14

Related to your "eye's won't go" symptom... I have had once or twice, severely low hypos where my two eyes simply would not point the same direction, never mind the direction I wanted. They were all over the place!

15

I have eye muscle issues to begin with (strabismus, nystagmus) so for all I know mine were facing different directions, too. I just remember trying to look at pictures in a book and it was impossible. Pretty sure my entire body felt numb for that one as well. Somehow no one noticed anything was wrong until about two hours later when they noticed I was acting weird.

16

Funnily enough I had similar eye symptoms when recovering from Ketoacidosus, after I was rushed to hospital, the next day my mother came to visit & she said I seemed drunk with my eyes rolling around, I remember that however hard I tried I could not bring her into focus.

One of my low BG symptoms is blurry vision, when I start to have difficulty focusing I know it's time to test.

17

I had two of these really bad episodes last week; sudden drops, too much insulin mixed with too much activity and I was uncontrollably shaking, every part of my body for close to 1/2 an hour. My friend was with me, she said it seemed like a mini-seizure. It wasn't just shaking hands, it was legs and entire body, unable to stand. I'm most certain if I hadn't downed a bunch of glucose I would have seized.

18

That sucks. BIg jerking motions - legs too - ditto. Were you testing your sugar when it started and stopped? Didn't the shakes stop a few seconds after you got your sugar raised to normal?

19

yes many of them they involved low b/s (below 20) uncontrolled involunteery movements biting the toung even the paramedics and the ER drs called them seizures