• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Am I having hypo seizures?

mentat

Well-Known Member
Messages
426
Location
Australia
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone,


For the last 4-6 years I have had major struggles after hypos. One very mild hypo can send me into a dark pit of depression, despair, and horror for up to 2 days.

Although epilepsy most commonly causes violent shaking seizures, in some cases it does not. I don't have violent shaking seizures, I don't black out, and have not been diagnosed with epilepsy. But I am wondering if I may be having hypo-induced partial epileptic seizures, followed by severe post-seizure symptoms.

My experience of hypos has always been odd. I have struggled to put it into words, and variously described it as:
  • Terrible feeling through the body there are no words for
  • Feeling like a nuclear bomb has gone off and I'm slowly being killed by radiation
  • Feeling an evil presence (Dementor) in the room
  • Intense feeling that something's wrong with the world
  • Feels like my soul is torn
  • Disgusting grey sludge in my veins
For the rest of the day, and sometimes longer, I not only feel like I've been hit by a bus, but my mind doesn't work properly. My perception becomes very focussed, particularly on negative things, and I find it hard to see the big picture of anything. I feel like I've lost control of the direction my mind takes, and I struggle to form memories during this time.

Yesterday I had a strange period of hyperactivity some 60 minutes after the hypo.

It really does feel like the electrical balance in my brain has been disturbed.

For a long time I have been avoiding hypos like the plague, but recently as my health has improved I got a bit less worried about hypos, and I had a very mild one yesterday that nonetheless derailed and destroyed me for the rest of the day.

I know everyone experiences seizures differently depending on which part of the brain is affected, but if anyone has experience with hypo-related seizures I'd be interested in your experience.
 
I have only had seizures twice from hypos and both times I was completely unaware of them. My mother observed me having one. Both times I ended waking up in the emergency ward on dextrose drips, I am sorry I can't be of more help. Your symptoms do sound like it perhaps could be a seizure are you going to talk to a Doctor about them to perhaps get something to prevent them, hypos are bad enough without you having to endure that! This is an awful thing for you to have to deal with.
 
Last edited:
I highly recommend seeing your doctor and getting tested for epilepsy. I have no experience with it so I can't be of help, but what you're describing is like a dramatized version of a panic attack for me. Hypos and panic attacks have very similar in symptoms and both can drain you for a full day (or more).

What are you testing at when you experience these mild hypos? From the research I did online it appears that seizures are more typical for when bloodsugars are dramatically low, not a tiny dip below 4 mmol/L.

I'm not knowledgeable enough on this to make a solid claim and I know everyone responds differently, so it's hard to say for sure. You could be experiencing a number of things, including seizures, panic attacks, or even be deficient in certain nutrients that can cause those sensations which are exacerbated by low bloodsugar. A doctor's appointment is mandatory in my opinion and with the generic/vague nature of the symptoms, I think that's your best shot at finding answers.

In the meantime do your best to prevent hypos and err on the side of slightly too high (not hyper) just in case.
 
A suggestion as to why mild hypos are causing these symptoms for you - your actual blood sugar is only one of the reasons you feel hypo symptoms. The speed at which your blood sugar is dropping and the length of time you spend hypo can also affect your symptoms. For example, yesterday I had a pretty mild hypo (4.3 -> 3.7 -> 4.0 -> 4.1) over half an hour, and it required about 60g of juice to treat (and even hours after, my blood sugar was in the 6's). I felt totally drained, physically and mentally, even though my actual blood sugar was never particularly low, and this was because I was borderline low for such a long time, and my body wasn't responding to the initial treatment of the hypo.

However, it is unusual to still feel different as a result of a hypo 1-2 days later unless you had an unconscious hypo. I would recommend asking a doctor about this.

As for the period of hyperactivity you experienced: often when I have a hypo, I immediately become more alert as my body recognises that something is wrong, and "wakes me up a bit" in order to help treat it. I suggest that a similar thing is happening to you - this is simply the body's natural reaction to a dangerous situation.

The weird feelings you described are not something I have personally experienced, but even with mild hypos I have had unusually severe symptoms. Once I saw the folds of a tablecloth moving (when it clearly wasn't) so I promptly checked my blood sugar and saw it was 4.1, a rapid decrease from an earlier finger prick. If your blood sugar dropped very quickly, you might experience symptoms of a very bad hypo when your blood sugar is much higher.

Again, these are just my personal experiences - you should ask your doctor about your own symptoms.
 
I should mention that I have also had many of the symptoms you have mentioned while having hypos like the feelings of doom etc. However I did not experience these until about after forty years of diabetes. They were quite terrifying not to mention disorienting.
 
Many thanks for everyone's input and perspectives.

I have just had a horror of a week following that hypo, something clearly wrong with my head, rapid cycling of moods and rapid cycling of beliefs, and after an emotional scene yesterday I'm back to normal again. Fairly similar to how this has played out in the past.

I have sought help with this several times over the last few years, with multiple medical professionals, but nobody really gave me any help. I guess it's time to try again and push harder.
 
@mentat I really feel for you because that is terrifying. I hope you find out what is going on and quickly because that is no way to live. Let us know how you go. Also have you spoken to a psychiatrist at all or a good physician or endocrine Dr?
 
Yes, I've seen two psychologists, a psychiatrist, a neurologist, and I see a good endo regularly.

Unfortunately I have always gone to appointments optimistic and cheerful, and I think this has contributed to my not being taken seriously. In addition I have struggled to put into words what happens during and after these "seizures" (or whatever they are) and have a hard time remembering what it feels like. A number of times I have made notes and brought them to appointments but I never get a chance to refer to them; it feels as if mental health professionals believe they will find the "real truth" by asking me an endless stream of probing questions and that anything I have written down is going to be too coloured by my perspective to be of any value.

This is indeed no way to live; I have been unable to work or maintain healthy relationships with anyone for the last 4 years and have never understood why. (Thankfully my family and fiancee are still doing their best to support me but those relationships have been not healthy at all.)
 
I'm wondering if Dr Bernstein maybe able to help you? Are you familiar with him?
 
it sounds more than just a psychological problem. I wonder if the release of adrenaline from your hypo is triggering some as yet undiagnosed problem.
 
Yes, I've got Bernstein's book

Although I do eat fairly high-carb sometimes, I've got my sugars under control these days. The hypo I had recently was due to my generally improving mental health, and starting to believe that hypos were not actually going to cause the emotional disaster they used to.

Clearly I have to go back to being extremely careful, and I will.

I'm trying to be open to the possibility that it's a purely psychological problem. I don't care what it is as long as I can start doing something about it. But I'm sick of people saying "you're anxious", "you're depressed", "that's understandable". Even if I have a psychological problem, that doesn't help me. The only real actionable thing I got was "I know this sounds crazy, but give that mental state a name so that it's easier for you and your partner to not take the behaviours personally".

But yeah, I do think there's a decent chance I have a physiological/neurological problem. And thanks for support here. I'm feeling a bit less crazy.
 
I would at least contact Bernstein as he may have a clue what is going on in that he sees hundreds of diabetics with co-morbidities. And yes it will be a huge relief just to know what the hell is going on. Your welcome regarding the support it's the least I can do and it would be good to find an answer for you, i'm trying to do some research of my own now as it's piqued my interest. Seriously though write or even skype Bernstein and see what he thinks as he is a physician and a specialist in hypos.
 
I would go see an epilepsy doctor because if this is true you need some medication to prevent seizures when having hypos. It's a death trap and if your wrong well nothing lost but if your right well enough said. I have an eerie feeling your right also and it needs some proper attention before something bad happens. Bernstein would know about diabetes with epilepsy co-morbitity. But I think you should see a local Dr soon who treats your concerns seriously and with respect and sends you to a specialist to find out if indeed you are having seizures.
 
I just read a lot of the posts on the epilepsy link you posted. They are very similar to what your describing, even the time lengths they spoke about post seizures and the out of body and strange thoughts etc.
 
genix said:
I just read a lot of the posts on the epilepsy link you posted. They are very similar to what your describing, even the time lengths they spoke about post seizures and the out of body and strange thoughts etc.
Click to expand...

Thanks, the validation is good. And it's something I've been missing for a long time.

Anyway, whatever it is, there is clearly something going on and I need to get to the bottom of it.
 
mentat said:
Thanks, the validation is good. And it's something I've been missing for a long time.

Anyway, whatever it is, there is clearly something going on and I need to get to the bottom of it.
Click to expand...

Absolutely, it should be your only priority.

Keep me informed and feel free to message me privately if you prefer or need to.
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…