Sogger’s Blog

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…

I recently mentioned my problems with Tegretol and that the neurologist wanted to change to something with the same molecular structure. With hindsight, I’m not sure why he wanted to do this, given that Tegretol didn’t work, but his overriding concern seems to be getting me off the Lamictal. He therefore prescribed Trileptal and I switched over to it on the Friday.

It was on the Saturday that it started; it began with pain behind my eyes, something akin to a migraine (which as I said earlier, is something I suffered from before the epilepsy started, although I cannot say whether there is a link between these two observations). This was a bit of a pain (no pun intended), because we were away for the weekend and I couldn’t just slope off to bed. As the weekend went on, it got worse, and I found myself unable to get warm, shivering constantly and generally feeling rougher than I have for a long time. To compound this, the rashes that I also spoke about recently got worse and even itchier (hhhmmm, are you enjoying the imagery?). This led me to read the lengthy tome entitled, “Trileptal Side Effects”.

Among this long list were common ones such as “flu-symptons” and “cutaneous eruptions”, and, “if you experience any of these, stop treatment immediately and seek the advice of your doctor”. Great. I therefore stopped and the seizures started. It’s now Sunday and we are on the long drive home with me shivering even more. As we arrive, I have to get out of the car and open the gate. It is then that the shivering gets worse and I just want to get into bed and under a pile of 10,000 blankets. I fumble for the front door key as the shivers continue to get worse. Oh dear, a quick trip to the bathroom is necessary, and you can imagine (if you are a bloke) what that is like to pee with a shaky hand (and I speak in terms of directional control rather than teenage kicks).

Finally to bed, and I am virtually flinging the sheets off the bed, so much am I shivering. After a few minutes of trying to stop it, things are down to an acceptable level and I can lay in the dark, fully clothed, wearing my beloved Parka and covered in several blankets (fewer than the requested 10,000, but enough to be going on with). I surmised, after calming down, that what I experienced was a panic attack, brought on by not being able to get to bed as quickly as I wanted, and worrying that I am experiencing some horrible side effects and being unable to contact the neurologist to do something about it. If this was indeed the case, then it is the first time it has happened to me - apart from the time when I was abused for a full 90 minutes by a bunch of footballers during a match in the south of England for simply being “a northern c**t”. In either case, it is not something that I wish to experience again.

I called the neurologist on Monday morning and described the symptoms to him. The fact that I was also running a temperature (38.9°) suggested to the neurologist that it was “only” flu and that I should see the GP. The GP wasn’t so sure and prescribed blood and urine tests. The following day, the test results came back and, sure enough, it was “only” flu. I now know that people who say that they have a sore head and a runny nose do not have flu, and know that this is the first time that I have ever had it. 10 days later, I am still weak, and a recent walk in the Lake District left me unable to move for two days afterwards!

So I have restarted the Trileptal and of course this means that the rashes are still there, and, given that  it doesn’t work, I am still having the seizures. Now I just have to wait until June 2nd to see the neurologist and try yet another cocktail. And so it goes on.

Anyway, enough of my detailed epilepsy problems for the moment - If you find them extremely tedious, bear with me because I write them in order to help anyone else going through the same thing - it is difficult to find a description of symptoms that match my own when I am browsing the forums.

As Corporal Jones said: “Don’t Panic!”.