Get a Grip
When I recently posted about a crappy week, I alluded to a crappy hospital visit - let me elaborate. Since no medication has been working since my ill-fated dabble with generic medication, I have regular visits to a neurologist and he decided that since the last failure, it was now time for another EEG. It pains me to run down generics, but if you are going to claim that there are no differences between generic medication and their more expensive patent-protected versions, then please make sure that this is the case. No idea what I am talking about? Read more here.
An EEG is the one that leaves you looking like the Sputnik monkey, with several tens of wired electrodes attached to your head, neck, arms and chest via blobs of wax that sets hard and is a bugger to get off again afterwards. As the test starts, you are asked to open your eyes, close them again etc. as they calibrate the signals from your brain. The worst thing about my test was that they had a student doctor in, and the technician was muttering lots of “ooohh, did you see that there when he just breathed out” as some spike in the signal no doubt showed up on the screen.
The EEG is actually a series of small tests, some of them repeated. This time, the same as the previous time, the part with the flashing lights was a doddle: playing a series of increasingly rapidly flashing lights in front of your eyes as you open and close them, while monitoring your brains reaction to them. No light-sensitive epileptic action for me, so I won’t be putting the Wii back in the cupboard just yet.
No, the bit that gets me is the hyperventilation test: spending 5 minutes deep breathing - really deep breathing. It didn’t give me what I recognized as an epileptic seizure, but, apparently my brain-wave patterns belied this. I felt nauseous afterwards in any case, but so would you. Just try it, and see if your fingers and toes aren’t tingling and if you aren’t feeling extremely dizzy.
So after 30 minutes it was over, off with the wires and off to the bathroom to pick the wax from my hair while waiting for the neurologist to examine the results…
Her opening gambit wasn’t too reassuring: “Hhhmm, it looks a lot worse than last time, it looks like a volcano has opened and we need to get a lid back on it as soon as possible”. “Yes please, that would be nice”. “Have you considered surgery?”. “Yes, but only for a vascectomy: not to have a slice of my brain removed”, I hypothetically replied to my computer two weeks later. She considered this a viable option, but when she saw the look on my face, retracted somewhat. With hindsight, I wonder if it wasn’t designed to shock a little, something along the lines of “snap out of it”. Why do I think that? Well, because, one of the other things she said was that I needed to work on was the “psychological aspects”. I nodded along sagely at the time she said this, not really thinking about what that really meant. I am now wondering if she was implying that she meant something along the lines of:
- I was imagining half of the seizures. Maybe some of them aren’t really seizures at all. Maybe my disorientation comes from premature Alzheimer’s. D’oh!
- I was bringing them on myself by thinking about having them. For example, before an important meeting, I might imagine how I might react if I am half-way through a presentation and have a seizure, and it becomes a self-fulfilling prophecy. When I told her about this, she asked me whether it would be possible to get a job that didn’t involve me having to be in contact with people. Chance would be a fine thing.
- I could stop them before they start by positive thinking.
- Once they had started, I could bring them to a close more quickly by thought alone. I think there is merit in this one, and I have been trying it out, with maybe some positive results.
- Another reason, that I haven’t got round to thinking about yet.
You could tell it was the quiet summer period because she also had a student doctor with her for the consultation and she threw the whole panopoly of treatments at me, including, for example, the modified Atkins Diet which has been known to be useful to control seizures in children. There is no way I am going to go to thes lengths, but one of the things I have done since is to cut down on quick sugar hits such as Snickers (boo hoo), and - well - no difference really - apart from losing a couple of kilos…
The final outcome, as always, was a change in medication. So, now it’s time to slowly wean off the Keppra and onto Epitomax. One of the ultimately disheartening things about changing medication is that it is often followed by an improvement in the condition. This time I went 10 days without a seizure. Considering that I had been having at least 1-a-day for several weeks previously, this was a stunning result. Unfortunately, the effect seems to have worn off now, and I am back to one every two or three days, but I am still playing with the dosage and still handling a stressful time at work.
At the moment we are under extreme pressure on a project for our biggest customer, so it’s all hands to the pumps. This means that today I had to ask a guy who works from home to come into the office for 4 days next week. This is someone who, two years ago, was going to leave because his wife wanted to move to the countryside and he didn’t fancy the long drive to work. That’s understandable, but because we didn’t want to lose him, teleworking seemed a good compromise, and, even though management were against it, we fought to get it for him. When I asked him to come to the office, his reply was, “OK, I will come in for 4 days, but you need to know that for the last 2 days I will be on sick leave - 2 hours driving in each direction are going to leave me extremely tired that I will just end up sleeping on Saturday”. There may be some logic in there somewhere, but for the life of me, I can’t find it.
Maybe the neurologist was right. Maybe I just need to find a job where I don’t have to deal with people…
Hmmm. A job where you can avoid people? That’s a tricky one… Trouble is, if do that and your seizures continue then your neurologist will start telling you you’re agoraphobic, that’s triggering it and you should seek a job with more people contact.
I remember the days when I used to think medical doctors knew what they were talking about but frankly - and this is particularly true of neurologists - they haven’t got a clue. The more they think they understand about the human brain the more they realise that they fundamentally don’t understand how it works.
Don’t believe them just because they wear white coats!
Actually, the doctor knew this very well and she wanted me to understand that she didn’t have a magic wand. I think she was trying to say: “You have this thing, there is no magic cure, we have a wide range of potential palliatives, any combination of which may or may not work, and we can help you find the best of these combinations. But the bottom line is that you can only help yourself, no-one else is going to do it for you: try modifying diet and exercise, positive-thinking or whatever gets you through the night”. Or something like that.
You sure they weren’t a life coach instead of a neurologist?!