my-epilepsy

staying sane with day to day life…having epilepsy

Sep 10

Is this our cat?

by donnas72

So I had a chat with the other neurologist, but she knew nothing about me, just asked lots of questions then suggested I take the does up one level. I wasn’t very happy with that idea because the higher frequency started more than a week ago. But I thought hey I’ll just do as I’m told and if it remains the same, I’m going to take myself up another dose.

Well unfortunately I think that’s what I’ll have to do. Three days passed (Friday, Saturday and Sunday) and today what do you know!! Another seizure this morning. This time walking home from dropping Lilly off at child care. In fact once again I know what I was doing. Creepy! There is a shop called ‘Fiji Market’ on South King Street and it is well known for having a tabby cat hanging out in the front doorway. I always say hi and sometimes pat it because it reminds me of our old cat Charlie.

But today I obviously had a seizure and stood there at the front of the shop, grabbed one of Lilly’s snack bars and started feeding it to the cat. And then I tried to get him to come home with me. I then called Stephen and asked him if we still had a cat. He said no and then no doubt told me that I had a seizure. I couldn’t believe it at first. I remember being so sure it was Charlie (sniff, he was run over three years ago).

What an idiot! Again, I have no idea if there was any interaction with anybody else (who knows, the owners of the shop were probably telling me to bugger off and leave the poor cat alone). But it’s weird that I have again got such a clear idea of the thoughts in my head during or just post seizure. This time I went straight to my friend’s cafe and took a whole Frisium like I’m supposed to, and touch wood, no more seizures yet and I don’t feel as tired. Stephen has suggested I take a break from personal training also, because every day that I train I have a seizure. Also have had them on other days so hopefully it won’t be an end to training, I have been doing it for 6 or 7 years with the same trainer. But it’s just another experiment to see if that is playing a part.

*Sigh* Who knows if we will solve this one. Personally I’d just like to go back to the old dose of Frisium and have a seizure every week or two weeks. Much easier to handle…

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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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May 17

Drugs drugs drugs

by donnas72

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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