Hi, just wondering if anyone has had experience with seizures due to extreme low sugar levels? I had my first ever seizure while I was away on holiday in Spain. I was unconscious for a few minutes after the seizure. It’s been about a month but I still haven’t felt the same since and I have developed really bad anxiety.
Hi Edina, I am 47 years old and started having seizures when hypo at 15 years of age and they occurred between 1-3 am a majority of the time. The doctors back then did not believe my low sugars were the cause of and ran many neurological tests that came back negative. In 2006 I experienced the worse seizure U had ever had and it resulted with me having frontal lobe damage, a cracked skull and losing my sense of smell. Finally I was referred to a neurologist studying seizures by low blood sugars and found Keppra works best to control my seizures. I had not had seizures until the stress of my father’s passing this past April and thankfully it was only one. Today seizures related to hypo episodes is acknowledged more and I recommend you get a referral to see a neurologist and discuss this with him/her.
Having seizures affects those around you also and I recommend you all find time to discuss your anxiety and their anxiety/fear and how all of you can work together when you have a seizure. My family would attend to me during and after the episode and if I had a migraine afterwards, I would be out to bed and checked in regularly until it was gone. Other times I would sleep most of the day away and feel weak for several days afterward. My family would get me medical attention if I hit my head, broke my nose, injured a shoulder, etc. It doesn’t take anyone’s anxiety/fear completely away but it does help to have an open line of communication with each other.
I had seizures twice while pregnant, was hospitalized and both me and my baby monitored for a few days to ensure we both were fine. My daughter was born healthy and is a mother herself now.
Your ability to drive will definitely come up and it should be your decision to give up or not to give up your license. I chose not to and made an agreement with my family to check my blood sugar before driving and while I was out to make sure it was safe for me to drive and I have had no accidents or complications since. Again, you need to make your own decisions about such things because no one knows your body better than you. Stand up and fight for yourself and get a second opinion of you don’t agree with or feel your doctor is wrong.
Diabetes and seizures can be managed…It may not be easy but can be done. I hope the best for you and am here if you want to talk more.
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Thank you so much for sharing your story. It sounds like you’ve been through so much but you’re still standing strong, I admire that so much!
Seizures have to be the scariest things our bodies can go through. Was your blood sugar taken after the seizures? Mine was taken and it seemed to be fine once I gained consciousness, even before I was injected with a glucagon. It would be back to about 85 or so. I’m wondering if our body goes in to shock and then releases glucose to wake ourselves back up. I honestly did not get much information from the doctors as I was in a foreign country but they kept telling me the seizure was due to a low sugar. I had been drinking alcohol the night before which might have affected my blood sugar temporarily that morning, but I’m still not sure. I think that is what is giving me this anxiety. I don’t know why and how it happened.
Spring @sryoungman you have certainly lived through a most trying and frightening time, WOW. I’m happy to hear of how you aggressively fought through your episodes and of the support you received.
I guess that I’ve been “lucky”. With over 60 years living with diabetes I’ve only passed out twice where I needed EMS assistance to awaken and they have both been in the past five years; well, there was another time 50 years ago when I woke up, alone, on a snowbank - I figure I was out for about a half hour but luckily I’ve never experienced seizures.
Your advice to @Edina about checking BG before driving is very similar to my practice - and I’ve been driving accident free [except for two instances where the other driver failed to stop on red]. For years, it has been my practice to check my BG before driving, and stop every 90 minutes to check again, and now that I use a CGM, I place the receiver in the console for anything more than a 10 minute trip.
Hi Edina, I think the lowest my glucose has been during a seizure episode is 36 or 39. As I was being moved from the gurney to delivery table, I seized and my glucose was 70 something and this past April it was 56. Since my episode in 2006 where I cracked my skull, we have learned that stress is a huge factor in my glucose levels, low or high, and Keppra has been the best medication to work for me. I have been put on two or three other medications prior and honestly I cannot remember what they were.
I honestly believe no two cases of TID is the same and I say this because my husband is also a TID and his case is opposite of mine, meaning easier to control. That is why I suggested talking with your doctors and standing up for yourself to have things looked into because no one knows your body better than you.
Other than my sister and close friend, both diagnosed in adulthood with Type 1 and Type 2 diabetes, I do not know anyone else, except my husband :-), with diabetes. I find it difficult to talk with other people who have this chronic disease or about my experiences living most of my life with it. It has been suggested to me several times that I should write a book about my experience and life with diabetes because it would help other people who have diabetes or a family/friend who has diabetes and I say no. I say no, because I am not an uncommon case of a person living with diabetes and am not an expert or educator of diabetes. I am not special, I am just an everyday person who deals with the ups and downs of my every day life.
One last suggestion, if possible, keep a record of when you have a seizure, what your last glucose reading before the episode, how much insulin taken, what was eaten/drank, any activity you were doing and time and date. This may be a good source as to what is triggering the seizures and how to manage them. For example, it was determined that I had gastroparesis (my stomach did not digest food efficiently) and that my glucose tanked early in the morning and not enough in my body for it cover.
If you have more questions for me, send them to me and I will answer them.
Sometimes I would say “yes” and agree with you but the truth to me is that it is my normal and sometimes I am okay with it and other times I just want to scream to let go of the frustrations of my life.
Spring, after reading what has happened to you, I feel VERY thankful that I have gotten off so lightly - without seizure. Yes, each one of us is different.
Of the times when EMS had to be called I know that one my BG was 10 mg/dl.
Hi. I am a mom of two type 1 kids. A few years back the summer before my daughter was to leave for college she experienced a seizure. Absolutely the scariest thing about being type 1. Since then she has been in a CGM which links to her iPhone and she “shares” with my iPhone so if she is going low in the night and she does not hear the alarm after say two alarms I will go in her room and make sure she wakes to eat and drink something to bring her back up. This was a GODSEND especially while she was away at college. (I would either call her phone or her roommate to wake her- but 9 out of 10 times she will awaken by the alarm her phone sends out. Btw it gets louder each time if ignored) neither of my kids (now young adults) ever wanted to use a pump- not wanting to be tethered to anything, but both have found the CGM to be a great tool in helping control their numbers (get real time numbers sent to their phone 24/7) and avoid any highs or lows. Hope this helps. All my best…
Edina, I’m not sure what your current treatment is, but my son, who is Type 1, had two seizures when he was very young (ages 2 and 3) because of the NPH intermediate insulin that he was on before he started using a pump. It dropped his BG down too low while he was taking his afternoon naps. He hasn’t had any since his endocrinologist put him on the pump. I know that others who have had this issue have started using the CGM systems, and it seems to have taken care of the issue because of the low BG alert feature that most of them have. Hopefully, this was just a fluke occurrence, and you will never have this issue again. If you do, the best advice I can give you is to document everything about them: time of day, symptoms after seizures, what you ate, drank, did before the seizure, etc. A seizure log will help your doctor to figure out if it is solely related to your diabetes or if you are developing a seizure disorder that is unrelated. My husband, who is not diabetic, developed a seizure disorder a little over two years ago. It is well under control with medication, and logging his seizures when they occur has helped him to recognize his triggers and indicators of when a seizure is about to happen. It helps him to feel more in control of something that he has no control over. He has serious anxiety too, and it does take him several days to feel “right” again after a seizure. A lot of what you are experiencing is probably due to the anxiety you are feeling. I have noticed that he is almost hyper-aware of everything that happens with his body especially during the first few days following a seizure because he is more fearful that he will have another one. (Interestingly enough, his first seizure occurred when he was in Washington at a much higher altitude than he normally is. The doctors think this helped to trigger the first seizure. I know Spain has a higher altitude as well. It could have just been the perfect storm of circumstances that triggered yours as well.) As I said; hopefully, this will never happen to you again, but keeping track of it, will help you and your doctor determine if it is diabetes-related or not.
My one and only seizure was due to alcohol consumption.
You have to be careful when drinking and taking insulin.
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alcohol sugars sky rocket our blood sugars, but burn off rapidly. What this means is, your blood glucose may be 350 after drinking, so you give a correction bolus and the sugars burn off. Your blood sugar starts to drop because the sugars are gone AND you have a surplus of insulin on board. This leads to extreme hypoglycemia very quickly.
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Your liver is busy clearing the alcohol out of your system, and will not release glucose stores when glucagon is administered. Glucagon is usually ineffective when alcohol is the cause to the hypoglycemic reaction.
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Every cell in your body requires glucose to burn for energy. When your body doesn’t have enough sugar for the cells in your body to function, they start to shut down. The seizure is your brain’s last ditch effort to function. It is just randomly firing impulses to stay active. Your brain controls everything in your body, so when it is starved of glucose, everything is affected and recovery from that emergent situation takes time.
I’m not going to say you should NEVER drink, but as diabetics, we have to understand what happens when we drink and be cautious.
I wear an insulin pump, so when I’ve been drinking, I decrease my basal rate by 50%. When I do this, my glucose levels usually run high, but that’s better than a hypoglycemic seizure.
If I give a correction bolus, I make sure I eat a 15-25 gram carbohydrate snack and a protein, like cheese, an egg or turkey slices. A few tablespoons of peanut butter is also a good source of protein and carb.
I’m sorry you experienced such a scary situation, and have anxiety about it. I always find being educated about things help decrease anxiety, so hopefully this will help you understand why it happened and help you keep it from happening again.
I have been T1 for 44 years. Except for the first 10 years or so, I have averaged about three night-time low-blood-sugar seizures per year. Some facts:
1 - Earliest signs of seizures were biting tongue and the inside of my mouth, falling out of bed and bruising myself, post seizure head and body aches. Friends report me sometimes screaming.
2 - My seizures scare my friends and provoke criticism of my self-care.
3 - There is no consistent correlation between the low blood sugar range and the occurrence or severity of the seizure. I have had my blood sugar range between 17 and 70. In general the physical and mental symptoms of hypoglycemia vary.
4 - My endocrinologist sent me to a neurologist who prescribed lamotrigine, an anticonvulsant which I continue to take daily. The neurologist never referenced my diabetes of which she had been informed. My diabetes literature from before the 1990’s rarely mentions seizures in connection with hypoglycemia. Even now all I read is that seizures can possibly occur during low blood sugar. That’s all: nothing more.
5 - In my case seizures only occur at night during low blood sugar. A seizure is quite traumatizing to whoever witnesses it. Caring for my blood sugar is as much for them as it is for me.
Diabetes Forecast had an article about seizures being related to low glucose levels several years ago. It acknowledged doctors are becoming aware of the correlation but the reason for it is still being researched. Not all doctors agree on it and as more research is done, that could change. Seizures can cause you to feel lousy for a couple of days and I do believe they are hard on families and friends too. Prior to the day we got married, my husband had not seen me have a seizure. We got married in Reno and went to a restaurant to eat afterwards and he hears a plate break and the crowd react and thought of me. He came over to help me and unfortunately I bit his finger when he put pie in my mouth, needless to say he never attempted that again. I did not have signs of when I was about to seize. I would get out of bed, not conscious of it, go to the kitchen start fixing a PB&J sandwich and crash to the floor and that would wake up my family. At times while I was coming around, I didn’t know where I was, the year, etc., and I would question myself about such things and knew I was more “current” when I could get names, dates or the current job I had correct. When I awoke from giving birth, the nurse asked how I felt and I told her I had to push and she told me my baby had been born. The last thing I remembered was telling the doctors I had to push. By the time I saw my daughter, she was a day old. Not all diabetics experience having seizures and those that do, may not have the same signals as others. It is good many people are sharing their experiences to let you know you’re not alone may relate to your experience. Hang in there and ask questions even if you feel or think you shouldn’t. Type One Nation is here for us all.
Hi Edina. You are young and will soon get a better handle on Control. I became Type1 in 1946 and had nothing to provide any help in those early days. Have now lived with T1 for 72 years & no complications. Today you have many tools to help you and many friends to stand with you with support.
This thread has been very illuminating. Thanks for sharing! Does anyone have any tips for preventing nocturnal seizures due to hypoglycemia for someone who lives alone? My partner has T1D and has had 4 seizures due to hypoglycemia so far (all while he was sleeping). He uses a CGM but doesn’t wake up to the low BG alarms. We will be living apart for several months, and we are trying to find out if there are other tools he can use to prevent severe hypoglycemia while he’s sleeping.
@sjz333 welcome to TypeOneNation. There isn’t much you can do except try to control the overnight sugars. On shots it’s a little more difficult to get the overnight control and some find it useful to try for slightly elevated blood sugars and use slow release carbs such as “glucerna” or by mixing carbs with fats such as peanut butter and crackers. You have this snack in the late evening to protect from lows.
There are also pumps that uses the CGM signal to stop insulin delivery. When the CGM detects low, it stops insulin until blood sugar begins to rise again and it does this automatically.
Whatever your partner decides, I wish him good luck 
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Hi @sryoungman. Could you please clear up something for me? I have myoclonic tics (not seizures) - I had them for a while as a child, they disappeared, and they returned a few years ago. We don’t knew what caused them or why they went away and came back, but no one ever connected then with my diabetes. I take Keppra to treat it and it works well for me. I have heard of people having seizures sure to low blood sugar - thankfully nothing like that has happened to me and I’ve always thought of low glucose seizures as separate from neurological ones such as epilepsy. So I’m wondering if the Keppra you take is for diabetes or for a separate seizure disorder - if you don’t mind my asking.
Thank you.
I don’t mind answering your question just hope the answer helps you.
I started having seizures in 1985 and back then there was no correlation between hypoglycemia and low blood sugars. I have an aunt with epilepsy and my doctors did every test possible testing me for epilepsy and all came back negative.
Since I can remember all my seizures involved low blood sugars, convulsions (my arms, legs & head), loss of consciousness, feeling week when I came to and sometimes migraines. The majority of them occurred between 2 & 3 in the morning. Nothing was found until 2006 or 2007.
In 2006 I had my worse seizure and my head but a tile counter top & floor forcing my brain forward causing frontal lobe damage and loss of sense of smell. After being released from the hospital and put through more tests I was diagnosed with Type 1 Diabetes Mellitus with Neurological Manifestations which includes Peripheal & Autonomic Neuropathy.
I tried two other medications to control the seizures before being prescribed Keppra. I saw a neurologist for two years before she decided I no longer needed to be seen yearly because of the success I was having with Keppra.
As for 2011, all I remember is having a seizure and being hospitalized. I then diagnosed with Generalized Epilepsy (the whole brain is involved not focal). These seizures were known as Grand Mal seizures and now known as Tonic-Clinic seizures.
Late in 2019 I had another bad seizure hitting my head on our time floor and wall. My husband called 911 and entire to the hospital I had four more seizures (first time I had more than one within minutes of each other) and was intubated in the emergency department. I was hospitalized for three days. They added Seizure Disorder (same info as Generalized Epilepsy just the worse of the four categories) to medical records.
Sorry for such a lengthy response I wanted you to have the most information possible. Also, during the seizure in 2006 I cracked my skull and cracked it again last year just not as bad and in 1989 when delivering my daughter I seized and my glucose was 70.
I went many years with my doctors telling me seizures were not connected to my low blood sugars and thankful a connection has been made, can be diagnosed and treated. I hope this helps you.
Thanks for the advice!
Sarah,
Adding to @joe’s comment. Dexcom has a ‘share’ feature which allows designated individuals to receive CGM data via a smartphone app. This may be a good idea if you are distant.
One insulin pump available with the ‘insulin shut off’ feature is the Tandem t:Slim with CIQ (Control IQ Technology).
Joe has been a very helpful member for a long time. His words are gold.
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Thank you! My partner does have a pump that shuts off when his CGM is reading low BG, but sometimes he already has too much insulin on board by the time the CGM reads the low. I do have access to the Share app, but he doesn’t wake up to alarms in the middle of the night, so I’m not sure that he would wake up to a phone call from me, but definitely worth a try.
Thanks for everyone’s tips and information! We have a diabetes education appointment scheduled soon, so hopefully we can improve how he uses his pump/CGM. We will look into glucerna and being thoughtful about late evening snacks.