The Highs and Lows of Type 1 Diabetes: Extreme Low Blood Sugar & Seizures

Wednesday, January 29, 2014

This is what a glucagon shot looks like.  It is SO important that to have one in case of an emergency if you are type 1 diabetic.  This will save your life.  

My first seizure was when I was seven years old.  It was only a few months after I was diagnosed with diabetes.  I had a double header soccer game that day.  I remember being so excited because I had scored around 10 goals and my Dad would give me a dollar for every goal I scored.  I was rich haha!

I recently asked my mom to tell me the story of exactly what happened the morning of my first seizure.  This was hard for her to tell me but I am sharing her story so that other parents with type 1 diabetics can be aware.

From my mom's memory:
"You were always active so when you were diagnosed with diabetes we did not want that to change for you, although your dad and I were still unsure exactly how exercise really affected your blood sugars at that point.  You had played two long soccer games that day.  You ate a ton of oranges and had a normal lunch.  We kept your insulin the same as every other day (thats where we went wrong). I did the carb corrections for everything you ate just like we were supposed to.  Your blood sugars that day were good.  They were not too low and never got too high.  That evening you were exhausted.  We checked your blood sugar before you went to bed and it was perfect.  Around 4am I had a weird feeling.  I went upstairs and you were fast asleep.  I looked a little closer and you were sweating.  I checked your blood sugar.  It was 35!  I tried to stay calm and had you walk downstairs with me to get juice.  You were in a daze.  We got downstairs and I told you to sit down on the floor.  I ran to the kitchen as fast as I could while screaming to your Dad to come help me.  Seconds later you were on the floor having a seizure.  We were panicking and didn't know what to do!  We called 911 and they said they would be there as fast as they could but in the mean time they told us it was vital to give you the emergency glucagon shot.  We mixed the medicine up in the little bottle and injected it into your thigh.  You seemed to slowly start to come out of it but you still were not our Lindsay.  After what seemed like forever an ambulance showed up and off we went to the hospital."

I remember feeling so sick the next day.  I also remember feeling like I had been run over by a truck.  My whole body was sore and I just felt weak.  My parents outlook on diabetes had changed after that...for good reason.  Paranoia for them was kicked into overdrive.  From that point on I was only allowed to spend the night at friend's houses whose parents were doctors or nurses, which basically eliminated everyone except a select few.  I can only imagine how scared they must have been and I would have been the exact same way.

My second (and it will be my last) seizure was when I was 14.  It was pretty traumatic.  I was a freshman in high school and on summer break.  That night I had gone out with a group of friends to Denny's.  I ended up doing much more of a correction than I should have that night.  At this time my parents were divorced and I was at my Dad's for the weekend.   I remember waking up in a complete sweat and shaking like a leaf.  I always kept my blood tester next to me on my night stand so I tested.  I was 39. I couldn't get the damn straw out of the plastic wrap to drink my juice.  I was panicking.  I tried to get downstairs as fast as I could.  We had these really steep stairs and I remember getting half way down and my brain was starting to take over.  It was the scariest thing I have ever experienced.  I knew I was going to have a seizure and I was still on the stairs.  I tried screaming out to my Dad but all I could get out was a muffle.  I tried to walk down one more stair while holding onto the rail and my body went stiff.  In my mind I was trying to scream for help but nothing was coming out.  It went black from there.  My Dad did hear my muffle scream...I am pretty sure he woke up to a whisper since my first seizure and thankfully gave me the glucagon shot as fast as he could.  He told me my head was in a pool of blood at the bottom of the stairs and he had no idea where it was coming from.  Turns out I had bitten my tongue really bad.  I woke up not to long after with a team of paramedics around me hooking me up and getting all my vitals.  I was still out of it but I heard one of the paramedics say, "She might have broken her nose and definitely cracked a few teeth."  To this day I still can see all of the faces that were surrounding me as I was waking up.  After a day stay in the hospital I came home.  Thankfully I had not broken my nose but I did indeed crack a few teeth which was fixable.

After that seizure I vowed to never have another one again.  And since then I have gotten even lower at times (I was 29 once while I was pregnant!) and was able to get my act together and treat it as fast as it could.  Now that I am a mom I never go anywhere unless I am prepared for the worst.  I bring my glucagon and never ever leave without tons of juice in my car.

How I am prepared and deal with extreme lows:
  • If I test and I am really low I try to stay calm.  The mind is a very powerful thing and I have noticed that if I start to panic my blood sugar will drop even faster and I will start to lose control.  I am in control and that is what I tell myself when I go really low.  
  • I treat lows with juice or honey and sometimes both.  I do tend to overcorrect for a low and don't always follow the 15 gram rule (sorry doc) but I would rather be over cautious than not. 
  • I always keep a juice box with the straw out next to my bed.  If I feel too low to test I just drink it and worry about testing later. 
  • If I am having a day where I exercise more than normal I will lower my insulin and check more frequently. Sometimes I even set an alarm on my pump to wake me up in the middle of the night to test. 
  • My husband is the most together person I have ever met and he knows exactly where my glucagon is and how to use it if I ever needed it again.  He has also dealt with me being really low before and has handled it like a champ (more on that later). 
  • I have had many talks with Max (my three year old) about me being low.  He understands fully.  He knows where the juice and honey is if I need it and can't get to it.  He also knows not to drink the kids juice boxes in my car.  He is a special little person for sure.  It makes me cry writing this but you must involve your family.  It is so important.
Telling these stories was not easy but I want to share because it can happen.  And the best way to prevent it is to always be over prepared in any situation.

If you are type 1 diabetic and have had an extreme low or seizure I would be so grateful if you shared your story as well.  How do you treat lows and what solutions have you come up with that work the best?

See also:
Exercise and blood sugar management (not as easy as it may seem)
How I prepared for pregnancy 

31 comments:

Charlotte said...

I'm in tears for your parents and for you. I never knew how dramatic and life threatening diabetes could be. Thank you for sharing your struggle, I hope it's helping a lot of people and opening the eyes of others.

Urban Wife said...

Oh, Lindsay. I cannot even imagine what your mom & dad were feeling! I'm so grateful that you've been sharing with us, even if it's hard. It really helps bring awareness to something that although I haven't personally experience, I have friends that have. You are so brave! xoxo

Meghan said...

I'm crying reading this. How scary this just have been for you and your parents!

Danielle said...

Thanks for sharing your story. Luckily My family and I are not living with type one diabetes, but it is always great to be educated.

Tiffany Smith said...

Glad to know that someone else's kids are deprived of the stashed juice boxes too;) Thanks for sharing!

Erika Lee @ A Tiny Rocket said...

You know what.. you are very brave. thanks for sharing. :)

Bailey said...

Thank you so much for sharing. I keep juice boxes in my purse, car, boyfriend's car, and home. However, sometimes if I am going on a short run, or stopping by the gym, I am not always prepared. I have never had a seizure or even passed out due to an extreme low *knock on wood!!*, but have definitely seen a number as low as 19 on my meter. Reading this post has reminded me how important it is for me to be over prepared in ALL situations, so thank you for that! I have found what you said about mind over matter to be very true. If I am in a situation where I am truly afraid I might black out, I say loudly in my head " You're okay, you're okay, you're fine, be calm." and so far, it seems to help me last unil I can grab an emergency snack. I am enjoying this series so much... thanks again for sharing!!

Mindy Singleton said...

Lindsay, thank you for sharing this story. As a mother of young children, my heart immediately sympathized with your parents. How SCARY! But you--even as an adult, this is YOUR everyday. What a brave woman you are!!
My mom became diabetic after getting Gestational Diabetes with my youngest brother. I remember sharing a Diet Coke with her and asking her if, now, I too had diabetes because I shared her drink. She laughed at me, of course. :-)
That was over 25 years ago and she still struggles with too high or too low and has a difficult time managing it - so thanks for the tips! I'll be sure to share them with her.
~M

emjay said...

I'm not diabetic so I have no idea what you go through on a daily basis, but I'm hypoglycemic. I really have to watch my blood sugar and make sure that I'm eating every 3 or so hours to ensure that my blood sugar doesn't get too low. I've had moments where my blood sugar has dropped really low and it can be super scary. There have been moments when I knew it was coming and tried to scream for help, but I wasn't quite as loud as I thought I was. Knowing that you're about to hit the floor is a scary thing. You're right about it being a mental thing- if you start to panic, it affects you. I try to keep myself calm and collected when I know I'm about to enter a low and I do my best to get to something that can fix it- like juice or a few bites of a luna bar.

Marjorie said...

I really appreciate you writing so much on diabetes type I. My grandfather had it and managed it terribly and died in his very early 60s from mismanaging his condition. His mother had it too. I just found out I have an autoimmune disorder that's related/similar to diabetes. While I'll always have this diesese, I want to treat it with diet and exercise as much as possible so I love that you post all these recipes and stories I can learn from!

Jenna Yerkes said...

Thanks for sharing. I feel having a Dexcom is so important for children and adults who
Have lows. I love mine and couldn't live a day without it!

Jenna Yerkes said...

Thanks for sharing. How scary! My lowest has been 43 and that was before getting a Dexcom. I honestly believe every child with type 1 should be prescribed a glucose monitor the same way they are prescribed insulin.

J.R. said...

Thank you for sharing. I know how hard those kinds of posts can be to write.
My lowest low that I remember is 24. I was laying in bed, just thinking about how I wanted to lay there, when I decided to test. I saw 24 on the meter, and thought, "whoa, that's low!" But I couldn't get up, and for a while, I just sat and thought about going to sleep. It wasn't a normal low-I wasn't filled with adrenaline, sweating, or hungry. Just oddly calm with my mind going a mile a minute. All of a sudden, I realized I had to eat or else something bad would happen. I found some old, sugar-free candies next to my bed, and I ate the entire bag. It was enough for me to be able to get up and walk downstairs, which is when the normal low symptoms hit. And hard. I tried to tell my mom how low I had been, but I was just chugging juice.
I've had a few other lows where I don't remember what happened, but I've never had to use a glucagon (knock on wood). I have a Dexcom and I'm so thankful when it beeps at me at night!

Tonya said...

I was in tears as I read this! My 10 year old daughter was diagnosed with type 1 last summer when she was 9. The lowest she's been is 51 and she "feels" her lows really well but I'm always worried about nighttime. She hasn't slept in her room since she was diagnosed and that is just fine with me! We're living YOLO (you're only little once) just like you guys :)

goatsdorun said...

Wow, thank you for sharing! I am not diabetic, but I think this is important knowledge to have regardless so people know what to do in these situations.

Stasia S. said...

SO glad you shared this! I think people rarely get to see this side of diabetes unless they are the care taker or significant other of someone who has the disease. It really speaks volumes of those who are strong enough to handle these situations...You asked for stories about any seizures or lows we may have had, so here is mine:

I was also diagnosed at 7, and unfortunately had a handful of seizures after my diagnosis up to the age of about 14 or 15. That was back in the N and R days of insulin...I was able to control my numbers during the day, but the peaks and valleys of that particular treatment ALWAYS sent me low overnight. I was especially prone to having a seizure if I was excited about whatever the next days activities were.

In this particular story, I was in the 4th or 5th grade. Both of my parents worked and I'm the youngest of 4 kids. My mom got me up before heading out the door, but somehow I had managed to go back to sleep (probably because I was already low). My older brother was in high school at the time and had forgotten his math homework that day. For some odd reason, his teacher actually agreed to let him drive home during class and bring his homework back...when he came home he saw my bedroom door open and my brown hair sprawled across the pillow case. This was obviously unusual since I was supposed to be at school. He did the right thing and got me out of bed, walked me to the bathroom and insisted that I test my blood sugar. I was talking to him, but according to him he could tell something was off because I was repeating what I had said as if it was the first time I had said it. I pricked my finger, put it on the test strip, and he goes, "you good?" It was right then that apparently my eyes rolled back and I collapsed on the floor and started seizing. He was very calm and even though he didn't know how to administer the glucagon, he called 911 and put me in a safe place so that I wouldn't get hurt during my seizure. He called my mom at work and apparently she immediately started sobbing, feeling guilty that she hadn't done enough to get me out of bed and ready for school. It's definitely a tough disease to have, but sometimes I think it can be harder for the parents :(

My brother had a lot of explaining to do when he got back to his math class so much later then expected, but luckily his teacher was very understanding :)

Anonymous said...

That is so crazy. I really don't know anyone (close) with type 1 diabetes... not since elementary school when we (the class) would take turns walking down to the nurse with the type 1 diabetic in our class to get his finger poked. Thank you for sharing, your blog is amazing. Your son is amazing, I remember the story you told about him saying he wants to be a dr to fix you. ;) So sweet.
Felicia

Lindsay @ Delighted Momma said...

Stasia S- Thank you so much for sharing your story! I am in tears reading it and what a special person your brother is. God was really looking over everyone that day.

Briley said...

I have not had a seizure, and I'm 24 years in. As far as diabetes goes, it's my biggest fear. My go to treatment lately has been Airheads (they are surprisingly easy to open). However, I always keep liquid glucose on hand for lows under 50, especially while running.

colleen said...

thank you for sharing so much about your journey! these episodes sound so scary - i'm glad they haven't happened in awhile and you're surrounded by so much support and love to take care of you, especially your little boys. max melts my heart.

vildmarket said...

As so many others have already said, thank you for sharing this very personal and important part of your life! I do not have diabetes but I am an RN who takes care of many people who do have it, and people like you who can be open in sharing their struggles and solutions are far more helpful than I think you realize. To see a real person taking necessary steps to manage this disease is truly inspiring to me as a healthcare worker & I know it will be inspiring to my patients as well!

SHUG IN BOOTS {Beth} said...

I wonder where they got the 15g rule? It is NEVER EVER enough for me. 15g might correct like a 70, temporarily - but it won't hold it there, and it's never enough to pull up anything under 60. It's weird because we are all different. My glucagon is expired. :( I need to get my doc to write me an Rx for another one. I will see him later this month.

SHUG IN BOOTS {Beth} said...

Oh, and I always keep juice boxes in my car. (They don't freeze! So far, anyway.) I load up the driver's side door, and the back of the passenger's seat where I can reach easily while driving. The straws aren't hard to open or poke through either. It's my go-to.

emily colay said...

I didn't read the other comments so if I am saying something someone already said, forgive me. I worked with a woman who is diabetic. She had a Jack Russell Terrier that they trained and now the dog can smell when her levels are off and he gently stands on his hind legs with his front legs on hers. She knows right away that she needs to check on herself. He can sense the levels about 30 min before she would even know. He's even gone to people in restaurants and done it so she has to ask if they are diabetic and then explains. Maybe that is something that would help - plus you would have a very devoted friend.

Melissa Heatwole said...

I read your blog often as I am type 1 since I was 12 and and am 30 now. My first and so far only low was a few months after I got married about 7 years ago and scared my husband to death when I wouldn't wake up one morning after he just thought I was sleeping in. He kep trying to wake me and I would only mumble back. He called my mom and 911 and I was 32. I just rememeber waking up in the ambulance and looking at the clock and it said it was 4:00 and I was so confused since it felt like I had just went to bed. It scared myself and my family so much, I now never sleep a full night with out setting both of our alarms to wake me up at 1 am and usually again at 4 if needed to check my blood sugar. I also keep glucagon in my purse at all times. Thanks for sharing about you life with diabetes, it is so nice to hear about another mom with the same things going on her life!

Heather Guymon said...

My daughter, Hannah, was diagnosed this past September at the age of 8. We have had a couple lows dip into the 30s, and it scares me so badly. I am so glad I came across your blog (someone had shared the Dry Drowning post and I read that, and was about to click out when I saw something about you being a type 1 catch my eye). I read this post and just burst into tears. I am so glad to see a beautiful strong mama with type 1. I fear for my daughter when she wants to start a family...we have a ways to go before that ever happens (hopefully) but it's so reassuring seeing people do it the healthiest way possible. I hope she can gain strength from examples such as yours.

Anonymous said...

I'm 29, I've been struggling with type 1 for around 5 years now. I've had two seizure 'episodes' this past year, none in the previous 4 years. One time was at the dump, I felt real low, started eating my emergency candy but it was too late. I regained consciousness as I was arriving at the hospital in the ambulance. I had bit my tounge badly and broke/dislocated two fingers when I passed out.. This last time at home while cooking dinner, minutes after taking a large dose for a big meal. Bam, waking up in the ambulance with another bloody tongue.. I've had to make the switch to R and N, Lantus and Novolog before. Its sad but I literally can not afford to buy the better meds and test strips. I now have health insurance for the first time in my life so I'm hoping I can get it together.

Natalie Henson said...

I have been a type 1 for 13 years and have had several lows. 23 is the lowest to date. I recently got the Dexcom G4 because I continually have lows in the middle of the night. I have had really scary dreams that woke me up only to realize that I was sweaty and shaky. Those nights I basically make a straight shot to the sugar bowl in the kitchen. It is so nice to have an alarm that goes off at 80 so I never have to experience that again!

samantha levitt said...

Hi my name is Samantha im a mom as well and a type one and Monday morning i went so low i had a seizure and bit my tongue bad and i don't remember waking up that day till 4pm it's crazy. I read your stories and im glad that there are other people in this world who face the same challenges. I guess i was fighting and screaming and puking while they tried to help me.

Anonymous said...

My husband had type 2 diabetes. He had the disease for almost 20 years. During the last 5 years he started having low blood sugars and was not able to recognize them. He was taken to the emergency room for an unrelated issue. They checked his blood sugar in the ambulance and it was 140. An hour and 15 minutes later in the emergency room they noted he had an altered mental state and ordered an EKG and Blood work. The blood work was back in an hour but I guess the nurse did not review the report. His blood sugar was at 77. Within 1 1/2 hours after the blood report was noted in his file, he was found not breathing. They were able to resuscitate him but he was brain dead. I believe he would be alive today had they monitored his diabetes.

Anonymous said...

OMG this brought me to tears....again my 21yr old daughter was diagnosed with T1 in Feb 2016..No problems yet..thank the good lord...thanks again for sharing this..:)

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