my-epilepsy

staying sane with day to day life…having epilepsy

Jun 27

Well, that was a non-event

by donnas72

Went to the neurologist yesterday. I was so sure he would take me off this drug but instead he has increased the dose. Blah. I think he was impressed when I told him it didn’t give me any bad side effects. (This is rare). So dose increased and we’ll see how it goes for two months. And then? We’ll wait and see.

Hasn’t started well anyway, this new dosage because I’ve already had a seizure this afternoon. One that I will laugh at soon but not yet, not tonight. In fact surprisingly I am so tired I can’t even begin to describe it. Going to bed. Even while Offspring is on and that’s saying something. Goodnight x

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Jun 22

Had to happen

by donnas72

Twice this time. Last night I sat on the couch and apparently rubbed my chin like I was in deep thought. And then this morning I seizured mid-toothbrushing getting ready to leave to take Lilly to child care. Can’t remember anything else Stephen has said, except that they seem to be in two stages and longer these days. The normal “rigid” phase, where I grip things, then I think he said the second stage is I am quite floppy and need to be sat down. And am unaware of my surroundings (sounds better than unconscious) and confused for longer.

I’m going to see my neurologist on Tuesday so I’m quite pleased about that, I think I keep saying that but I am v curious as to what the next step is going to be. I know one option will be to turn my VNS up a notch; I’m quite happy with that.

Stay tuned, let’s see what happens…

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Jun 15

Almost a seizure diary really…

by donnas72

Yesterday was my “due date” for a seizure, as they seemed to be happening every Thursday. But yesterday passed and woohoo!!!! no seizure.

But early this morning – boooooooo – seizure. Just the same old complex partial, however this time I was mean to my little girl. Well, I didn’t hurt her and I didn’t yell at her, but apparently I pushed her out of the way when I woke from my post-seizure doze. I feel so horrible, and this is just the icing on the cake now when it comes to asking my doctor to take me off these drugs, as they are of absolutely no benefit whatsoever.

I’ve decided that I have ‘drug resistant epilepsy‘ after reading this article –  CAN YOU PREDICT WHO ARE LIKELY TO HAVE DRUG RESISTANT EPILEPSY?. And I can learn to accept that, and not keep hoping that one day a new drug will come out that will work for me. Such is life, it’s who I am and there are a lot of worse things that I could be suffering from.

I’m going back down to my morning hang-out shortly, my local pub. Sounds terrible I know as it is not even 10am. But it’s not to drink alcohol, I promise! It’s to have my morning coffee with my good buddy the publican Brandon. This morning is his shout, and he’ll be back from the shops/cafe shortly. Thrilling news I know, but he is a wonderful person and is a real help on my seizure days. As I have said previously, I am not very comfortable being alone on days when there is a good chance I will have a seizure (although recently there hasn’t been more than one a week). And Brandon is a great person to be around, he is funny and also very helpful with advice on various issues. So as dodgy as it sounds, on the way home from dropping Lilly off at child care, I call in at the pub for at least an hour or so. WITH TAKE AWAY COFFEES!!!!

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Jun 8

Completely unrelated post

by donnas72

I’ve realised, quite some time ago, but still don’t remember, that asking a three year old the question “are you sure?” is pointless because they do not understand it. For example:

Mummy: “do you want to go to the toilet?“

Lilly: “no“

Mummy: “are you sure?“

Lilly: “no” – therefore if she understood that she’s contemplating and she’s now wondering if perhaps she does need to go. HA!

But I still say it! Every time! Can’t seem to help it! Must be the epilepsy 😉 (Gotta use that word in some context don’t I?)

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Jun 8

Mexican seizure – incautación

by donnas72

Only one seizure this round (touch wood as usual). Yesterday I met up with various friends and spent the time in between walking back and forth up and down King Street to meet them. Good exercise though, particularly helpful for all the Canberra food I ate (even though most of the meetings were again to eat 🙂 But finally I was walking up King St to go meet Lilly at child care. And I was alone. But the reason I know I had a seizure was that the first post-seizure memory I had was that I was sitting at one of the benches outside Guzman y Gomez, the yummy Mexican take-away that’s been there for a few years. And it was 4:30 – when I was supposed to pick Ms Lillian up. So I realised what had happened. I got up and left, rather embarrassed and hoping I hadn’t ordered something and was running away.

But it got me thinking, I wonder if I had had some sort of aura, which made me sit down and have the seizure. I have read that you often don’t remember these, so maybe I did have one – I knew I was going to have a seizure so I decided to sit down in case I did something dangerous like run across the road. Trouble is, I’ll never know. But it’s a nice thought.:)

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Jun 6

Winter Winter Winter

by donnas72

Yes there’s been a big gap between posts. We went down South to see Stephen’s family in Canberra. It was cold!!!!! I should not complain about the temperature, I will always remember what an ex-colleague (you know who you are) told me the winter temperatures were where she comes from (-25) so why on earth am I complaining about +6?????

So what did we do there? Mostly we ate. Ate. Oh, and we ate as well. The most fantastic food you could imagine. I just love the food at both Stephen’s parent’s and Stephen’s sister’s houses. I wish I enjoyed cooking, and I can’t even use epilepsy as an excuse for not cooking. It’s just pure laziness. I’ve never liked cooking. I don’t mind following a recipe now and then, but I have to follow it word for word and I just find it tiring. I wish I wasn’t like that. Oh well. Lucky that cooking skills runs in Stephen’s family and my husband himself is a fantastic cook.

Tomorrow I am due to have a seizure or two or three if this routine keeps up. I think I am going to stop taking these drugs. I’m seeing my neuro in 3 weeks and I’ll tell him if anything they’ve worsened my seizures. Plus Stephen has said that I have become very “vague“. I hadn’t noticed that but I guess it’s something that only gets noticed by others. He said he is worried about me a lot because my replies to conversations have been slow and sometimes I’m just not there, almost like I’ve been in a seizure.

I realised when he said that, that he’s never known me as someone without epilepsy. He’s only seen me as someone on different drugs, and how they have affected me. Some have side effects that affect Stephen just as much as they affect me (and now Lilly too). It must be pretty hard – reverse the roles and I think I would have trouble being married to someone with epilepsy. So once again, thanks Stephen, for putting up with the various Donna versions you have to live with. Wonder what he’d think of me if I took none? I asked him that, and he said, he probably wouldn’t like me 🙂

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