I maybe should of put this in the “hypoglycemia unawares” discussion, but here it goes. I was wondering if while your low (you being anyone willing to reply) do you black out or are you aware of what your doing or what is going on, etc.
When my daughter goes real low, she has seizures. I just freak out. I know that I have to get control and handle these situations better. But in my mind I think she is in pain or distress of some sort. This last episode however, she didn’t go into a seizure but was twitching very badly. For me this was just as scary. But after, she said it was like she was blacking out. Now, I’m thinking that maybe I won’t panic as much if I realize she is blacked out and not hurting or anything like that. I hope I’m making sense.
So are you guys remembering what happens when your hypo? Are you aware that your having a seizure or anything like that? Are you in pain or distress (besides what’s obvious to us who are watching)? Thanks so much for sharing, your all so good about that!
Hi Lisa,
It really depends on how low i am as far as what happens But i am never in ANY pain. I occasionally will have a small headache. Absolutely nothng major. But since i am not a headache person i am suspicious of the blood sugar when it comes up and always check it. Does your daughter get any signals at all before the seizures start? Usually I will feel some nausea. Sometimes i start sweating. One time i felt a little light headed. I try to keep my blood sugar around 100 and lower, but don’t usually have many lows that affect me. One time I was in a store and had a low that came up pretty fast. I had ignored the little signs (because I didn’t know what they were) and got up to check out and was unable to write the check and needed help to get something in me. I was unable to think at the time. Thank God the clerk was also diabetic.
If your daughter’s lows are this bad, i can’t help wondering if she shouldn’t have a CGM. Is this a possibility? I am sorry i didn’t ask how old your daughter is. And you are definitely making sense. Anything that affects our children is terrifying. And it is especailly so when they can’t tell you so you can help before it gets to that level. But a word of comfort here. When we are blacked out, it is like being asleep. We don’t hurt when we are in surgery and we don’t hurt when we are blacked out. i hope this helps
She just started not feeling them, but she always used to. She is 14. We are looking into getting the CGM, but it doesn’t look like insurance will cover it. I’m going to be talking to the doctor about helping us regarding the insurance. Right now, we are just checking her sugar constantly and she certainly must feel like a pin cushion.
It’s hard to be calm when she is thrashing all around and her eyes are rolling up in her head and she’s making these terrible noises. But if she isn’t aware of it and in her world and she is just blacked out, then that would help me not to freak out so much - I hope. It is agonizing for me to see her like this and I just panic. I know that I got to get control and help her. I do help her, but I’m crying, praying and screaming all the way. It’s just terrible.
This is a pet-subject of mine, so here is my take on it …
I used to have a major problem with hypo induced seizures, the worst of which caused a wedge-compression spinal fracture. The experience is different for everyone, but I lose consciousness before the convulsions start. I think it is more distressing for people who witness it than it is for me. Having said that, seizures are not good and should be avoided if at all possible. Seizures scramble neuron connections and have a disabling cumulative effect.
The best way to minimise seizure risk is to eat low-carb. Let me explain … . My experience has been that seizures only happen if blood glucose has been dropping really fast. So the best way to avoid seizures is to stop blood glucose falling precipitously. Blood glucose only falls fast and far if something caused it to spike in the first place. As we all know, it is large amounts of carbohydrate that cause blood glucose to spike. And balancing this effect with injecting insulin is tricky, to say the least.
Seizure inducing hypos are normally the result of a mismatch between a carbo load and the corresponding insulin bolus. Which is why the risk of seizures is minimised by limiting carbohydrate consumption. Making fat the main source of energy goes a long way to provide a seizure preventing level of blood glucose stability. I have found that this works really well. I had a seizure last week, but it was the first one in 5 years.
Lisa, I am so sorry. That has to be absolutely terrible. Are you writing these in a log? i know that your glucometer can store numbers and give you an average, etc. But I use a simple notebook because i write in what I ate and what is going on in my day and if anything else comes up, like my blood pressure is high, etc. I write it down. It is extra wiork, but it may give you an idea as to when these are going to come up. If these come up after a particular food or a particular activity then you may be able to plan around them and prevent them. i don’t know how often they are, but I was wondering if a few bites of something like cheese may be able to keep things on a better level in between meals. If she drops too far too fast after a particular amount of insulin, maybe smaller more frequent meals might help. I realize she would have to stick more often, but if you found the combination it might help,. At her age, her hormones might be the thing causing the wild swings for her. Anything is a possibility. Please know that as you are crying and going through this time of crisis with her we are all with you. I used the thought of all the tu diabetes family to give me strength when I went through my last endoscopy. I don’t get anesthesia when they put all that down my throat, so i just held onto all the people who care about me. It doesn’t remove the problem but it makes it easier to go through. I will keep you both in my prayers for this and for the CGM. Please come back and let us know how things are going.
Mark, I always worry about what kind of permanent damage these seizures can be causing, and of course the doctors brush it off as if it’s not really an issue! I’m going to talk to her about the carb thing. I’ve been trying to convince her that diet is key, but when she first got diagnosed the nurse educator (for that particular doctor) told her that she could eat whatever she wants as long as she covers it with insulin. Now, no matter who tells her otherwise, she just sticks with what she wants to hear and believe. And she loves them carbs! She actually hasn’t had a seizure in about two years, but these two recent hypos were very close. I could tell by the look in her eyes that she was headed there, and she was twitching uncontrollably. At first I thought she was dancing (she competes).
Hi Saundra,
Our endo has us keeping a diary, but it doesn’t have a detailed list for what she is eating, only the amount of carbs, etc. As for eating cheese, and things like that in between, sometimes it may help. But we’ve tried it before and it usually makes her run high. Her numbers are really all over the place. Up and down. Since on the pump, she is better than before the pump. And dance has helped, although she runs lower more often. And that’s why I think that she’s not feeling her lows lately, because she is running so tight. Thanks for all of your prayers! Praying for the cure daily gives me faith that all type 1’s will see victory over this.
It seems from the response that I’ve received here so far, that most of you are not realizing what is going on while your seizing. I’m hoping that this will help me to not panic and stay in control of my emotions so that I can help her the best I can. Thanks again for sharing.
Insurance companies are coming around more and more to pay for CGM when T1’s suffer Hypoglycemia unawareness…Aetna approved mine on my first appeal. i sent in 15 pages of backup documents…and 2 letters from my endo…pre cgm A1C’s…post CGM A1C’s ( i initially paid out of pocket), meter reads in an excel spreadsheet highlighting highs and lows, and a lengthy letter about why i need it.
Aetna is always on the tail end to go with any new technology, so i was quite shocked when they approved coverage at 90%—sensors at 70%. But they are apparantly approving now for Hype unawareness and/or wide fluctuations in blood sugar readings.
I wrote both Letters of Medical Neccessity and emailed them to my Endo for her to sign(less work for her) - Dexcom has sample letters. If you want to see what i sent…reply and i will email you everything.
good luck
I strongly suggest a CGM—it will help so much, as she gets older, and wants to drive - with Hypo unawareness, she probably should not. I know T1’s that stopped driving for 3-6 months due to hypo unawarness.
Hi Lisa This is mary ann and I am new here. I have been a type 1 diabetic for about 38 years now and I was diagnosed when I was 15 years old When I was young I was very much aware of what was going on with my low blood sugars and remembered quite alot of it Now I am going thriugh hypoglycemic unawareness as for having diabetes so long. Unfortunately now I do not remeber too much of what I do and most times I do not even know ot is low until someone calls me or sees me or sometimes I see distorted images on the walls or someones face then I am alerted to check it and it is always low. My husband and children are very afraid for me especially because I work alone in my home as a homedaycare provider I had a few seizures but I barely remember much of it Also alot of hypoglycemia does affect your memory cells later I have a very forgetful mind now and it is really hard to deal with hope this helps mary ann
Lisa: Since I went on the pump, I am much better able to recognize my lows, since they come on less quickly and are not as intense.
When I was on injection therapy, with 4 or more types of insulin in the system, taken at a half dozen or more different times of day, the lows could come on very suddenly. Because of all of my highs and lows, I had developed hypoglycemia unawareness. Three lows required paramedics, and one of which required a brief hospitalization (the emts would not leave me because of my irregular heart beat – I now carry a card with my usual ekg, so anyone can know what is “normal” for me).
When I went on the pump, the severity of the lows decreased significantly and my awareness of them returned. I have been fortunate to never lose consciousness over them.
My symptoms: heavy perspiration, eyes are not able to focus (and it seems as though there are bright white spots in them), hightened tension or nervousness emotionally, my ability to speak intellegently (to the extent I ever had it) departs.
I’ve never had pain, other than a couple of times when there was minor tightness in the chest, but that went away as soon as I got my BG up.
The bigger problem was and still is over-night lows. I have really frightening dreams from which it is difficult to awaken and, when I do wake, I am so disoriented that I am not sure whether I am still dreaming (and dreaming that I am low), awake but impaired or worse.
Mollie,
This is great! I appreciate any info that you can send us that will help. My focus right now is to get the CGM and I am consumed by it. And we may be able to purchase the CGM and then submit the pre and post A1C’s as you did. This is exciting news for me. And for Jamie also. She really wants to be able to drive. I’m scared to death just thinking about it. Our endo will not sign for the license unless her A1C is 9.1 or lower. We just can’t seem to get there without the many lows. I’m curious as to what your A1C is now if you don’t mind sharing. Thanks again Mollie:)
Mary Ann, thanks for sharing. How do your children handle your lows? Are they able to help you and if so, in what way? Do your lows upset them much? Thanks for sharing!
Hi Jonathan, Jamie’s numbers are better since going on the pump. And the number of lows has decreased as well. It’s encouraging to hear that you are starting to feel your lows again. This is the second time I’ve heard this. When we were at the endo for her last visit, they implied that once your unaware, it will probably be like that forever.
Before the pump, she had four different hypo’s while she was sleeping. It was terrifying for me to find her in that state. I thank God that I woke up! I always worry “what if I don’t…” She is such a heavy sleeper. Every night I check her sugar at 12 and 3am. I’ve been doing this for five years. It would be so nice to have the CGM so I can just look at it and not have to poke her.
Thank you for sharing Jonathan! Your story is encouraging.
Lisa: The CGM has its benefits, but DO NOT RELY ON IT TO PROVIDE AN ALARM SYSTEM FOR OVERNIGHT LOWS. That is probably my greatest disappointment with it.
I won’t say that unawareness completely goes away, but, with decent control (limiting the broad swings between high and low), things do get better.
I’m curious…does Jamie have any recollection of having been low overnight?
Jamie has no recollection of her lows that occurred while sleeping at all. As a matter of fact, the first one she had was so bad (I estimate that she may have been seizing for about 10+ minutes before I found her), that in the ER she didn’t remember what day it was, and even kept thinking that she was still in there from being diagnosed. She kept asking us the same thing over and over again. I was so worried about this memory loss and and it instinctively told me that having these seizures can not be good. She eventually realized what day it was, but she lost a lot of the memory of the previous day which was an active day for us. She did not even remember going to sleep.
Now these last two episodes, which happened while she was awake were different. She told me she was low, so I got her the OJ, and then she wouldn’t drink it down and started starring blankly and twitching uncontrollably. I would say, “Jamie, are you okay?” (I know, sounds like a stupid question) and she would respond to me that she was fine. Then I would tell her to drink her OJ and she would take a tiny sip and put it down. I had the glucagel in my hand and was ready to use it on her, and she pushed me away and drank the OJ down. After it was all over, she said it was like she was watching the TV and then black out and the the TV would be back on. So it seemed like she was in and out. She says she did feel some of the twitching somewhat.
I realize as far as the CGM is concerned that I can’t rely on the alarm. But I’m hoping to just get up and look at the glucose level without poking her. Do you think that would work? Just to cut down the number of times she is poking herself to check her sugar throughout the day would be nice. We realize she will probably have to do it atleast three times a day, but right now she’s doing it anywhere from 15 to 20 times a day! Very extreme.
hi
lisa this is mary ann
yes my children do get upset with my lows especially my 16 yr. old daughter I deny my low blood sugars and get very stubborn about taking sugar to correct it in fact a few times I had her in tears! I have hypoglycemic unawareness and I do not know how to correct it. My husband calls me sewveral times A day to check me… But on the whole I feel that both my kids handle me very maturely with my diabetes They usually give me my glucose tablets or a glass of juice until I can think clearly But I feel God has blessed me with wonderful kids! mary ann
Lisa: It is interesting to hear Jamie’s perspective on what it was like – as though she were watching tv. In my more severe overnight lows, I often felt as though I were watching a movie filed with special effects that exagerated certain things.
My most notable experience with OJ was a time when, after my third glass of OJ, I had not recovered and actually did not remember having had them. My wife called 911 and they said to mix 3 teaspoons of sugar in with the OJ. By the 4th glass (with the sugar), I started to come around. I never lost consciousness, but there were things that I did not remember.
When I went o the CGM, my finger sticks actually increased, from 6-8 to 12-15. I still test very often, even with the CGM. I do not think having the CGM has really reduced my number of finger sticks. I do not trust the CGM enough. Once the technology is better, perhaps so, but not yet.
Sorry I haven’t responded all weekend. We’ve been at competition and I just haven’t had time to get on here at length. Jonathan: I got to tell you, this sounds so discouraging for me. What is the use of having the CGM? Was it really that unreliable for you? What kind did you use? Maybe you already mentioned it, but are you still using it?
Rainbowgoddess: Jamie uses Novolog with her pump. When she was on injections using Lantus with the Novolog it was much worse. I used to treat her sugar if she 90 or lower, and the endo’s office would chastise me for it commenting on how that’s not low. And honestly, she would seem to go a little high after that. How did you treat anything below your 5.0?
I was told it is more common for children to have seizures when they go low than it is adults.
I am an adult (24) and whenI start to go low, I can remember it. I usually just can’t make my brain work. I don’t feel them until I am very low, and at work once I dropped so low that I did actually black out. My boyfreind was there (as it was 15 mins before I finished). He said that I didn’t have a seizure or anything. But I was unconscious.
I was also told that it doesn’t cause any long term damage. However, you should try and find out why she goes low. Is she taking too much insilin for example.
