my-epilepsy

staying sane with day to day life…having epilepsy

Changes…

Woops it has been nearly a month since my last post. That’s terrible! I’d like to say it’s because I haven’t had a seizure for a month but noooo, that’s not the case.

So let’s see, I was going to see my neuro because I was having a seizure every 5 days so I felt the new drugs just working. So what happens? It was two weeks until my appointment and did I have another seizure in that time? NO! Which is great of course but kind of negated the whole point of my going to see him. Maybe the drugs were starting to work? Part of me thought briefly, maybe I’ll just lie and tell him they are still happening frequently, but I just can’t do that. Bad karma! So I told him the whole situation and he decides that next time I have a seizure he will ween me off another of the three drugs that I take. Frisium. I am quite happy about that because that is the drug that makes me sooo tired. He looked over my history and decided it has never really provided many benefits (always nice to hear that you have wasted $100s of dollars on medication).

So that “next seizure” happened to be that afternoon! Once again another case of me jumping into a taxi for no apparent reason when on my way somewhere (I think this has happened about three times in the last few months). So I’m now midway through coming off my Frisium. Good news, it hasn’t had any bad effects. I had a seizure this morning, exactly two weeks since last one! Quite pleased if this pattern remains. One a fortnight is much better than two a week.

And this one was a nice normal one at home with Stephen, no taxis or sandpits or any other humans involved. Did I tell you about the child care sandpit one? That was one of the every five-day ones, and I only found out the details a week or two later when I met up with the man, another parent, involved again. It all sounds so dodgy, and sometimes it feels dodgy, like it was one of those times (when we were younger of course, never anymore) when we had one of those nights out drinking and we got so drunk that we know something or other happened – just can’t quite remember. Or, another analogy is when you wake up and you had a dream that you know was interesting in some way or another but you just can’t remember it!

But back to the seizure – when I saw the dad again at childcare  I asked him about the seizure and yes, in my opinion I had totally embarrassed myself. He said he looked over and there I was lying in the sandpit out in the playground. He didn’t think much of it at first (maybe playing a game with Lilly or something), but then realising I wasn’t and I was just staring into space, thought yes perhaps I was having a seizure (luckily his wife knew I had epilepsy so must have told him) so came over and asked me what I was doing. Apparently I said “needed to go down” (take that anyway you like – I nearly died when he told me that). Upon further investigation, I explained that I needed to get down to the level below to pick up something. And the poor guy tried very hard to explain that there were no lower levels, no escalators, lifts, nothing. This was the ground floor, the bottom floor. He continued, he said, until I finally understood and therefore I guess I must have come out of the seizure and wondered what on earth I was doing sprawled across the sandpit. But I didn’t remember any of this so why I was very keen to find the dad. He was very nice about it and told me there was nothing to be embarrassed about (but let’s swap places and see how he feels if that had been him having the seizure!!)

So there you go. Pretty funny in the end.  OK I’m tired, going to have a lie down. Will try to start writing more regularly again x

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Had to happen

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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Almost a seizure diary really…

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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Drugs drugs drugs

Awesome title right? Unfortunately not so much in regards to epilepsy control. I’ve tried so many I’ve forgotten a lot of them now. And anyway I don’t know if I’m allowed to mention the actual names so I’ll just refer to them as “these ones I was on once”.

So right now I think I’m on a record number of tablets a day. A total of 12 – five in the morning, seven at night. Three different drugs. With my newest addition I’m actually doing well in regards to lack of side effects. All I have is tiredness – but not much more than I do normally, and my appetite is a bit odd. My neurologist said they had similar side effects to some I have been on before which caused some awesome weight loss, but I don’t think these are going to do the same (dang). Some days I have absolutely no appetite (woohoo!), but other times I have a completely normal appetite (which is rather large – bum!) so I can’t see any weight loss happening (sigh, I’m so female).

Some other drugs I have been on before have totally emptied my head, so badly that I had to call my neurologist and request to stop taking them. I just felt completely brainless (yes even more so than normal, can you believe it!!!!) and could hardly stay awake. Also I couldn’t walk straight – looked drunk most of the time. BAD.

Several other drugs I’ve taken have played badly with my eyesight. I’ve had diplopia (double vision) very severely. A suggestion of getting by in the outdoors by a good friend was to colour in the inside of one lense of my sunglasses and that worked really well. For some reason if I shut one eye I was ok, but when both eyes were open I saw two of everything. I had a very kind colleague actully help me up and down the stairs at work, something I could not do myself. And to mix these drugs with alcohol, even small amounts, was a big no no! I’ve had two embarrassing public events…

The first one was years ago, before Lilly was on the scene. I was with some friends after work at a pub and I made the mistake of having ONE drink, and taking my tablets. And I fell asleep on a colleague’s shoulder. I was shrugged awake, then walked zig zag across to the bathroom. A pub employee came over and kicked me out with the assumption I was totally pissed.

Second time was only a couple of years ago, and again, one drink and tablets together. I felt so incredibly unsteady and when I got up I nearly fell over. My poor friend I was with, totally sober, helped me out. This time the restaurant’s employee was very kind, and she raced out afterwards to see if we needed her to help get me a taxi. Embarrassing or what!!!!

So that’s my drugs. Oh and of course, being female again, the worst ones were my first ones which added almost 10 kilos to my weight. But luckily they didn’t even control my major seizures so they didn’t last too long.

I just cross my fingers that one day, I’ll find a combination of drugs that will completely control my seizures and I’ll get to do stuff like drive again. One can always dream!!!!

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