Type 1 and Epilepsy

I haven’t visited for a while—a lot has happened in the last few months. I’m going to tell my gruesome story (but it has a happy ending).

I was diagnosed with Type 1 in late 2010 at the age of 22, and I took it in my stride and got on with living the best life I could. But somehow my mental health began to deteriorate in late 2012 and totally unravelled in 2013. I became a fragile wreck. For a long time I thought it was burnout, stress, and I took time off to recover. Things didn’t get better. Despite a supportive family and no financial burden, life became a daily nightmare which I tackled good-naturedly and with a strong fighting spirit, because that’s who I am.

Unfortunately, there was no obvious medical problem. I didn’t get migraines or have convulsive fits (or, for House M.D. fans, bleed out of any orifices). It just seemed that I wasn’t strong enough to cope with diabetes and the other minor stresses in my life. Doctors labelled me as “depressed”, which I knew was rubbish. But I also had “episodes” (sometimes several times a week) where I felt some extreme negative feelings, unbearable pain and suicidal thoughts. The problem was, I barely remembered these episodes afterwards and struggled to explain to doctors. I had so many feelings that I couldn’t find words for. These episodes were the most likely to occur within 2-3 days after a hypo, especially multiple hypos.

It was hard to tell at the time, but I was also suffering from all sorts of intellectual and emotional problems. Poor memory, inability to form plans, disorganised thinking, hypersensitivity, paranoia, an inability to assess my limits, uncharacteristic anger, and much more…

Around 18 months ago, I started to wonder whether I might perhaps have a non-convulsive type of epilepsy. I was referred to a neurologist who seemed doubtful. He ordered an EEG, which was clear. So I dropped the idea for a while. But after some months of being optimistic (things got a bit better for a while, and then I started using Afrezza which helped too), the problems returned. I followed another theory (brain damage caused by lows), but eventually the fluctuating nature of my problem brought me back to epilepsy. 4 months ago, I raised the issue with a different doctor, had another EEG which this time was abnormal. A second neurologist was unconvinced. Finally, just last week, a third neurologist saw me and said that it’s clearly epilepsy, just an uncommon form.

So, that means my “episodes” were non-convulsive epileptic seizures, which would explain why I had extreme trouble communicating at those times and had poor recollection of them later. And the other problems I had are not uncommon surrounding seizures. (After a convulsive seizure, it is fairly common to have memory loss, sometimes temporarily losing all memory of the last several years of your life! Epilepsy can really mess with a lot of things aside from just causing seizures.)

Four months ago, after the EEG, my doctor prescribed me a first-line epilepsy medication, Sodium Valproate, and immediately everything started turning around. There were still good and bad days for a while… but within a month I got to the point where there were only good days. :smiley: The medication seems to have pretty much rid me of all the bizarre problems. And no side effects. It really is a silver bullet. Things aren’t perfect, but they are pretty close.

Months ago, when I read about how people with epilepsy have “auras”, I immediately thought, “that’s the perfect word for how I feel when I’m hypo” (the feeling I described here). These “auras” have also disappeared since starting the medication.

My suspicions

I think my diabetes, and in particular, hypoglycaemia, took a predisposition to epilepsy and wrenched it wide open. (I had a couple of events in my youth, before diabetes, which may have been “mini” versions of my seizures.) It is well known that seizures reinforce the neural connections that promote future seizures; and I think hypoglycaemia helped trigger these pathways too. This article suggests that T1D can cause epilepsy to develop.

I also believe that my epilepsy regularly disturbed my hormones, which made diabetes near-impossible to manage. (I often had to modify my carb ratios by absurd amounts to maintain stability.) So far, things seem a lot more settled on the medication.

Some reflection

The 5-year hole in my life is horrible and I’m struggling to come to terms with it. It does bother me that I told numerous endos that hypos are “really really bad” for me, that they “destroy me emotionally”, and nobody scratched beneath the surface. I tried to explain my episodes to psychologists and psychiatrists but they didn’t take much notice.

But I don’t blame the medical system. My symptoms were so subtle, so good at hiding themselves. My epilepsy hit me in just the right places to make it hard for me to explain what was wrong, hard for me to know what to do, hard for me to keep track of how much time was passing, hard for me to realise what I was going through didn’t make sense. Despite my memory and intellectual problems people could have conversations with me and be impressed by my intelligence and wealth of knowledge. It was just my really bad luck that I developed a condition so effective at eluding treatment. I guess statistically speaking it is going to happen from time to time, and I was one of the people that it happened to. I hope I can help others who find themselves in a similar situation.

The fact that this condition was so elusive also means it’s incredibly good luck that I found a solution at all, let alone within just five years. That all I have to do is take some pills twice a day. That I was able to make such a major and quick recovery once I started medication.

Thanks for reading. I hope sharing my story will help someone, somewhere, somehow…


Do you have thoughts on why the first EEG was normal but the second was abnormal? Was anything different done on the second EEG to try and trigger an episode or do you think it may simply have been luck of the draw to catch it at that time?

Did the third Neuro Doc run anything different to form their diagnosis or was that dx based entirely on testing you already had performed?

Are you aware of any family history of epilepsy?

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I’m glad you figured out what was going on and got a diagnosis! I used to have seizures as a kid, and had one weird incident as an adult, and to this day I wonder if I might have some form of epilepsy (apparently as a kid I would have been diagnosed had I had one more seizure). I also have a relatively rare medical condition that it took about five years between symptoms and diagnosis, so I can relate to how difficult that is. I hope the medication continues to be successful for you!

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I have a close friend whose daughter started having seizures, so I’ve followed this as he’s gone through the process. The main problem is that unlike diabetes, where there is an unambiguous diagnostic test (high BG), EEGs are by their nature subject to each doctor’s interpretation. An EEG taken immediately after a seizure is over will typically be normal, so to diagnose reliably it is necessary to be taking one at the time a seizure is occurring. Even then it isn’t clear - at the extreme ends there are results that most doctors would interpret in the same way, but there is a whole group in the middle that are open to interpretation. My friend got different diagnoses by different doctors (all of whom are respectable specialists in various esteemed Boston hospitals), and some were convinced she had epilepsy, while others were convinced her seizures were psychogenic, and thus not treatable with medications. I was amazed at how primitive and subjective the tools for diagnosis are - the brain is still very mysterious to modern medicine.

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@mentat, what a harrowing story but so glad you finally got appropriate treatment! I think it’s really incredible that you have shared your story here; this is something I had no idea about (atypical manifestations of epilepsy). I knew that epilepsy tends to be more common in those with T1D, but this idea simply wasn’t on my radar at all.
This is truly a service for others out there who may be grappling with similar symptoms.