Category: Epilepsy

Keto Quiche

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This is something that has made low-carb a lot easier. It is what gets me out of bed in the morning. It is literally one of my favourite foods.

Here’s one I prepared earlier

A friend with epilepsy who is on the keto diet for seizure control put me onto an amazing very-low-carb “quiche.” The trick is to use cheese instead of pastry to form the shell.

Basically you line a dish with cheese, pour over eggs and cream, then put more cheese on top, and bake. Quick and easy and makes a big batch that you can keep in the fridge.

Here’s the recipe:

Ingredients

Suits baking dish of approx. 28cm diameter.

  • butter
  • lots of grated cheese (tasty)
  • 1 finely chopped tomato
  • handful of diced bacon
  • 1/2 small onion finely chopped
  • Optional: chopped cooked zucchini, squash, cauliflower etc.
  • 10 eggs
  • small tub (300mL) thickened cream
  • salt and pepper
  • generous amount of mixed herbs

Method

  1. Grease the baking dish with a little butter
  2. Line the greased dish with cheese
  3. Put the eggs, cream, salt, pepper, and herbs into a bowl and whisk until combined
  4. Heat a chunk of butter in a pan, and fry bacon, tomato, and onion
  5. Distribute fried mixture evenly in baking dish
  6. Optionally add cooked vegetables
  7. Pour egg mixture into baking dish
  8. Top with more grated cheese
  9. Bake at 180°C for approx 50 mins; keep an eye on it after 30 mins
  10. Insert a knife into centre to check if cooked
It can rise quite a bit so don’t overfill the dish

And you end up with...

Well, this:

Somebody should bottle this and sell it

It’s firm and fluffy and is just as good when fridged and reheated. I’ve been eating it for weeks and I’m not sure I could ever get tired of it. Bon appétit!

All in the wrist

AleksLeave a comment

Whooh, there we go. After a few months with only half-maybe-seizures, I had a pretty distinct one. A mild focal/partial/who-really-knows, which is about the worst that happens at this point. But I’m not here to talk about that.

Epilepsy’s major events like tonic-clonics (though I have never had one) kind of dwarf the myriad other weird and hard-to-describe symptoms. I’m hoping that my putting them into words might help others deal with them.

Believe it or not, this post is about... technique. One of the puzzle pieces that has dawned on us recently is the way a seizure changes my technique.

What technique?

I literally mean, technique. The way I drink out of a cup. The way I inject my muscles with insulin. The way I walk! Bianca and I have noticed things that really seem like a change in technique.

At first we called it clumsiness. But that didn’t quite capture it. I just seem to undergo a “permanent” change in the way I move and do things. I use different technique. And it doesn’t quite work. I have to unlearn it and relearn the right technique.

For instance, while injecting into my biceps they would twitch (very painfully). I had solved this problem months ago. And I did this by pressing my arm against the opposite thigh. But now it wasn’t working any more. I knew exactly how I used to do it. I pressed my arm down in my lap. Well, I could have sworn that was it. Eventually I started experimenting and found that I had to press down with my fist.

It was like my muscle memory and my factual memory had been displaced. A similar thing happened with drinking out of a cup. I was arranging my lips in a different way and spilling constantly. I had to experiment and re-learn. Clumsiness doesn’t cover it.

I still have Biadepsy

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I haven’t been reporting much on my diabetes because it’s been too inconsistent and intangible to really have anything to say about it.

Really it’s been a disaster. I’ve flapped around on some combination of Afrezza, NovoRapid, and intramuscular NovoRapid. Back when I said that my evening basal was intent to reach 0, it did reach 0, and things went great for a few days but that ended and slowly my Levemir slid back from morning to evening.

And suddenly the clouds part and it’s smooth sailing. I just... knew. I told Bianca “tomorrow everything will settle down. I don’t know how I know.” And they did. Diabetes started behaving. And it’s still behaving, a week later.

You might think that my fast-and-loose management was the problem. Think what you like. I’m confident that I know what I’m doing and it’s diabetes that was that unruly. The fact that I could sense that it was finally tamed, before the fact, says something. I mean, I micro-dose a lot and I get a good feel for what diabetes is doing underneath that. But the point is that the micro-dosing suddenly became much less necessary.

Looking back over the last month, I realise now that it wasn’t diabetes. It was biadepsy. My sugars were hard to control, which turned up the pressure on my epilepsy, which played with my hormones, which messed with diabetes, which... vicious cycle. I started working harder to get more sleep, be more aggressive with my sugars, and eat a more repetitive diet, and it didn’t work and didn’t work... until it did. I got off the merry-go-round. And I’m still off it. Hopefully it’ll last a while. These days that does happen.

It isn’t normal

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Oooookay so last time I said that I needed to take it easy for a while. I was experiencing extended emotional tension, minor irrationality, still not really coping.

That old pattern emerged. Take it easy. Things don’t get better. Keep taking it easy. No improvement. Rest rest rest. Nothing nothing nothing.

... my medication’s off.

Well, I nudged up my Lamictal by the smallest increment. Everything is going back to normal. Woot!

Just makes me wonder, if I had been on the right dose, what would have happened? Something tells me I would never have slid downhill.

That begs another question though: is Lamictal propping me up for higher and higher levels of stress and overwork? I don’t think so. I have dialed back my workload significantly compared to previous months, and am learning to manage stress better. Nonetheless I’ll pay more attention to getting fresh air and exercise and taking regular breaks. Aside from physical health it’s good for creativity and alertness and other things that I depend on.

Is it normal?

AleksLeave a comment

I keep telling people my epilepsy is virtually gone. It’s an oversimplification. It’s an easy way of conveying how gargantuan a change Lamictal has brought to me. But there is still something there.

I suppose a reasonable analogy would be like having malignant cancer surgically removed, leaving a scar and regularly getting tested for signs of recurrence.

Right now my health is clearly strained. A week ago I came back from an intense one-week trip to Sydney. I fit a lot into it. A lot of meeting friends, giving talks, getting work done, getting my blog rolling, going to a Jacaranda Club (epilepsy) meetup, and spending (not enough) time with family. Some late nights and even some medication stuff-ups. And then after I got back to Melbourne a friend stayed over for a weekend. I hadn’t laughed that hard in years, it was a lot of social interaction for an introvert, plus serious late nights.

So, it’s normal that I’m wobbly and spent and struggle to cope with doing work, right? That’s how I feel. Do I just feel that way because I don’t want it to be epilepsy? Yeah, I think so. But it’s more because my inner optimist is the voice I generally listen to.

Writing this post is helping me think objectively, though. Is this a normal human thing, or is it my health? I can never be sure. When I was untreated, these were some of the early changes that would happen as my risk of seizures increased.

I am constantly watching myself (and Bianca is watching me too) for signs that I am starting to slip. Is it normal, or is it a warning sign? Is it even real, or just due to overthinking? Is it normal? I don’t know. Is it normal? She doesn’t know. Is it normal? How do you tell?! What is normal??

Anyone who hears about this would say “that’s really unhealthy.” We know. But the alternative is disastrous. Unhealthy is better than disastrous. Kind of like getting painful biopsies to check for recurrence of cancer.

At the end of the day, I’ve objectively had a very intense time and, epilepsy or not, should take it easy for a bit. Which is what I’ve been consciously doing.

But no regrets about the last few weeks. The benefits significantly outweigh the costs. In this case. There are times when that isn’t the case, which were very common before Lamictal, but hardly ever now. I guess that’s why I often say my epilepsy is virtually gone.

HELLO WORLD

AleksLeave a comment

This blog has been many years in the making. There were so many well-defined ideas pent up in my head for so long, but I couldn’t write them down. And I mean really couldn’t. I had a serious, undiagnosed illness that meant writing was not a thing I could sustain. At the time, I had no idea why.

But here I am, having made an incredible recovery, ready to write. Words can’t express how much this means to me.

I intend to write mainly about my journey with type 1 diabetes and epilepsy. Both of these diseases are very isolating, because they are so complicated. There’s a lot more to them than most people assume. “Oh, you have to inject yourself with medicine, I could never do that.” “Oh, you have fits, I feel so sorry for you.”

Yeah nah. The needles are the easy part. I don’t have fits, but even for those who do, it often isn’t the worst part. I like it when people show they care, but it can still be really painful when someone clearly has no idea what I actually go through.

As someone living with two crazy chronic illnesses, I know it’s very nice to read about someone else who has similar experiences to you. It’s validating. It’s a relief, it releases pent up feelings. It makes you feel like you’re not fighting alone. So I hope I can give that feeling to others. I also hope others will find my experiences valuable, perhaps learn something or get new ideas.

But what do I know? I’m not a marathon runner or film maker or doctor. I’ve always been terrified of putting myself in the spotlight and I’m crap at networking and have never collected followers before. I’m not sure I’m meant for this. But part of me says I’ve got something to offer in my own way, so... here goes.

Welcome to my blog!