I think I said I wasn’t going to turn this into a blog about my health, but because I have just had a comment on my blog post ‘ The Lady with the Headache‘, I thought I’d give you a quick update.
Reversible Cerebral Vasoconstriction Syndrome, being reversible, has reversed. There is a slight feeling of panic whenever I get a headache, but having stopped my SSRI antidepressants there is no reason why it should come back. HAving gone cold turkey from the citalopramm I had been taking, I think I have now adjusted as best I can to life in all its glory, without having the extreme highs and extreme lows cut out. It’s taken a bit of getting used to. I am very, very emotional… Talking of which, just in case anyone reads this and decides to stop their anti-depressants dead, DON’T DO IT. It’s not how it should be done. Discuss it with your doctor before you do anything.
I saw the nuerosurgeon (who was, I might add, lovely) during April, having gone on a cancellation. He sent my brain scans to Sheffield, who declined to carry out radiotherapy because of the location of the cavernoma – it’s too close to my skull. I am lucky, in that I have only one cavernoma and some people have lots. I know I am lucky, and yet I don’t particularly feel lucky. I would probably have gone through my life never knowing I had a cavernoma, had it not been for the RCVS. But now I do know, I rather wish I could get rid of it. Of course I don’t want brain surgery and to consider it would be ridiculous on something so small with such a low risk. But nevertheless, I am now aware that there is a risk. Ignorance is bliss, as they say. If it bleeds, I will have stroke like symptoms down the left side of my body – let’s be honest, if I have any symptoms which might be a bleed, I will go straight to casualty. I’m told that the symptoms would go away when the bleeding stopped and the blood was reabsorbed, but it’s not a nice thought.
To end on a positive note: for a couple of months after I came out of hospital, I thought of the cavernoma as my own, personal, ticking time bomb which I carried around in my brain. It was the first thing I thought about in the morning and the last thing I thought about at night. It isn’t anymore, which means that I am learning to live with it.
Leave a comment