Hi Jo and Amanda,
Thank you both for your support.
It's two weeks tomorrow since my last infusion and I'm still experiencing what appear to be side effects from the Iloprost. My jaw is still saw / tense and I am still getting headaches in the forehead region, similar to what I had while on the infusions (and paracetamol and endone), but much weaker now. It feels like the intensity is fading, so that's definitely a step in the right direction.
I read somewhere (on a British site I think) that Iloprost can take up to 6 weeks to take full effect. I'll be interested to see where I am at that point. At present it seems to be helping mildly, in as much as the blood seems to return to my extremities quicker than without, but I am still having many attacks a day. As many attacks as the times I experience temperature change or coldness. Today was a particularly bad day as I was exposed to cold temperatures for a lengthier period than usual and like the olden days (pre-Iloprost) my hands and feet went numb and were very painful.
I'm not sure if there is research to support it but I would put money on the fact that I have Raynaud's attacks in my brain. When I am cold it feels very much like there is not enough blood up there. Thinking is difficult and vagueness reigns supreme.
I'd be interested to see if there is any research into it.