It was while my friends were here, one of them is a shiatsu practitioner, the other one was holding my feet and rubbing them at the same time. P was due home to get changed for a funeral and I knew he'd walk in and think what a load of nonsense and be a bit bemused so I was waiting for that to happen and worrying what to say (couldn't say anything) and feeling a bit stressed about it all. Then the foot rubbing became annoying and I'm forming the words in my head to say "please stop rubbing" but they're not making it to my lips.
This is a common problem. The words in my head are not making it to my lips. They're going round and round in my head, forever silent. I can have a phrase go round in my head. A thought a feeling, that just doesn't make it out. Oh how this frightens me. To be locked in with my own words.
So I had a seizure. The feeling of not being able to control the noises my mouth makes. The knowing in my head that this was happening and not being able to control it. That Andie and Em would not know what to do. That Em had to get P from upstairs, Andie said he would know what to do. He's never seen me do this, I am crying in my head! He came and held my hand and Andie was saying if you can hear me Helen exhale, and I am making vowel sounds with my eyes closed and I can't make it stop. I can't make it stop.
P is under the impression it's a panic attack. I have no idea what does this to me. I think I got a bit stressed and didn't know how to process it so had a seizure. I was very upset, this means I am going to have more. I guess I need to embrace that. P spoke to the neuronurse as I did, who have upped my anti seizure meds and gave him reassurance that it wasn't the shiatsu that brought it on.
I have got to get my head round this. The thoughts in there are not coming out.
Posted on the brain tumour page and these replies helped;
Hi Helen. I can only comment from my own experience and am by no means an expert but please try not to worry. I returned home on Wednesday from my second resection. I had my first back in march followed by radio/chemo then 4 chemo cycles before I had a regrowth and had to go back for more surgery but what I do know is that being 2 weeks post op your going to still be at increased risk of seizures for a few more weeks just simply because you've had brain surgery. After my first op I was told that the increased risk usually lasted about 6 weeks just while you recover but like everything, every individual is different so don't quote me on that, the six weeks I was told is just a general figure.
Hey Helen! Congrats on that 95% !!! That's brilliant.
The seizures are most likely the result of scarring to the brain tissue: it's angry about being jabbed at, so it will probably be a bit crazy for the next little while. Scary (scarry?) :) , but not unusual at all. Hopefully after a short time things will settle down and the meds will keep things under control for the future. As Dave says, it's different for every person. It really is!
For myself, I'm on anti-convulsants for life: my tumour caused some wires to cross in the first place, and that was that. In my case, removing it didn't untangle those wires. My brain then gets extra annoyed after being picked and scraped at during surgeries (that's where you're at right now, post-op), so it throws big electrical parties to amuse itself until it heals or just can't be bothered to act up anymore. Or until the right level of medication is reached. They've been raised a few times since (**sometimes** triggering more seizures for a few weeks, but that's just a temporary and uncommon side effect of putting the dosage up. Again - Dave's words of wisdom apply here, so don't worry! Just fyi for peace of mind in case you're anything like me!).
So, it will take time, but you'll adjust to whatever the circumstances will be. I know all too well how frightening any kind of seizure is, and I still don't quite know how to deal with them. I do get sad sometimes. And I don't want to accept it. But letting family or friends know how to identify your auras and/or seizures (i.e. whether they involve convulsions, or are non-convulsive and not visible to them, like the aphasic episodes you describe) is really helpful for everybody. Seeing them, but also knowing how to react and what to do. It's a source of comfort in general - less stress and less fear that way. Combine that with the right meds, and seizure control gets much easier. Now, keep healing! xo