Hi, I'm currently facing an upcoming MRI (this Tuesday), my first, and it's kind of brought the magnitude of my problem right up close. Suddenly I realise that none of my options are really rosy. If they find nothing I'll be condemned to a life of meds, and the meds, so far, have been very difficult.
I was unable to get past 600mg of Tegretol without unmanageable side effects (bad nausea, 'drunkenness' and quite bad hallucinations). I am now on a combo of Tegretol and Lamotrigine but it seems to be causing (or is causing the Tegretol to cause!) new unpleasant side effects (the same old nausea and motion sickness, but also a different kind of hallucination and continuous headaches and light sensitivity), so a lifetime of this is not a cheery prospect. The drugs manage my shocks, but not the continuous 'sensitivity' inside my mouth (which is a whole different anxiety all by itself), so the drugs, so far, are not really providing a 'cure'.
Likewise, even if I am a candidate for MVD, do I really want to take on brain surgery and its attendant risks?
I actually find myself wishing that I will have small benign tumour that they can operate on and solve my problem, but how realistic is that?!
Then there's MS, or malignant tumours, or some skull defect they can't fix.
It's an old unhappy list, and no doubt familiar to many of you, but my problem is I find it very hard right now not to be overwhelmed by the sheer magnitude of it. Because I can't put an optimistic slant on it – there being no real positive outcome – I don't really know how to deal with it.
I find that this overwhelm is coming out of me in an odd way: whenever I am alone and try to relax, like in the shower, or writing in a journal or doing hypnosis or visualisation, I simply start crying, like someone's died. It's the most terrible inconsolable grief – that's the only word I can think of to describe it.
I have never, so far, dreamt about my illness, which I find odd since I think about it 24/7, but last night I dreamt about it for the first time, and I was crying in exactly the same way, like a small child destroyed by some kind of dreadful terror and grief.
I'm sure many, many of you have gone through this. How did you handle your MRI and the inevitable facing of the results? How did you cope? How did you come out the other end?
Any guidance or suggestions most gratefully accepted….
P.S.I should have mentioned, I have Classic TN. And I should probably just add, I am an atheist, so praying is not a comfort to me!