No Cavernoma, No Drugs

After my visit to see Dr Lennox back in March you will remember that I went onto Topiramate for prophylaxis and ramped that up over six weeks. Meanwhile I had my MRI (scans from which you can see here but the findings were disappointing (or so I thought) as they failed to find a cavernoma in my temporal lobe as well as being rather worrying (talking about what amounted to hardening of the arteries in my brain and what sounded like evidence of small strokes).

So today we went back to see Dr Lennox. It was on the NHS this time so it was all something of a rush and at the time I was a bit upset by it but now I've had time to analyse what was said the conclusions are really quite profound in some ways:

1. Hardening of the arteries - bit of a red herring that one it turned out: apparently what they were seeing is perfectly normal for a man of my age. Moreover my blood pressure is textbook at 105/70 and my blood cholesterol is 4.2 which he described as "enviably low" so I'm doing all the right things to keep it under control. So that was a big weight off my mind.
2. Epilepsy - sadly he seems to have given up on that one. I wasn't really very happy with the way he dismissed it. The impression I got was that as it was under control with the drugs why mess with it? (Because it means I can't drink and AEDs have side effects? Anyway save that for another day.)
3. Migraines and headaches - he claims to have cured my migraines and that what I'm suffering from now is largely medication-overuse headache. He says that if I go completely "cold turkey" then that will cure me. There's a good article here which backs all of this up. The bad news however is that:

   When you stop the painkillers or triptan, the headaches or migraine attacks are likely to get worse for a while. Some people also feel sick, become anxious, or sleep badly for a few days after the painkillers or triptans are stopped. These are called withdrawal symptoms. You will have to tolerate the headaches or migraine attacks for a while, and other withdrawal symptoms if they develop.

   Your headaches or migraine attacks should then gradually go back to a normal pattern. This often takes 7-10 days. However, in some people it can take a few weeks (occasionally up to 12 weeks) for the withdrawal symptoms to go completely and for the headaches or migraine attacks to return to their normal pattern.

   So I've now gone "cold turkey" and, as it happens, I've got a blinding headache at the moment.

   But it's not all bad news as I also got a box of Cadbury's Roses on the way back from Addenbrooke's: I figured that if I can't take proper medicine I might as well self medicate with something to cheer me up while I'm feeling crap over the next few weeks.

   And as the Topiramate is making me lose weight chomping sweets shouldn't be a problem.

4. This is the biggie and I didn't really grasp how big it was at the time as I was still getting my head around the last one: my original cavernoma in my pons has gone. Yes, that's right, I do not have a cavernoma any longer.

   Of course it still leaves me with the neurological damage from the bleed in 2002 but unless I'm very unlucky and one reappears I'm not going to get any further bleeds, which is what has always scared me - especially given it was in my pons where even a small bleed can be "game over player one".