Hemicrania Continua without Indometacin

Has anyone else been diagnosed with Hemicrania Continua ?

I was diagnosed with HC 13 years ago and developed TN this year. The only thing that gives me any relief for the HC is indometacin and amatryptalin. So far tegratol is working well for the TN. I would really like to come off the indometacin but can’t find an alternative that works.

I seem to be going in the opposite direction : It all began , it seems , as a straightforward facial neuralgia possibly as a result of sinus surgery , over 20 years ago . Since then I have ‘developed’ H.C. , after working my way through all the available medications ( and types of neuralgias it seems ) , with varying degrees of success , but nothing that made a lot of difference . When the smoke cleared recently , there were only Indometacin and myself standing . As I can’t be prescribed this , because of a strong chance of haemorrhaging with the state of my stomach , I’m left standing alone on a windswept barren plain , with no rescue in sight . Over the years , I have developed all sorts of symptoms of which I had no idea that they were all part of a H.C. package . So , any suggestions , black magic or otherwise ( joking … I think) , would be welcome . I have a daily ‘soup’ of various medications , which I have acquired over the years , and which I am thinking of cutting back on , hoping that perhaps I might be a little less zombie-like . Do write if you have any inkling of possible helpful suggestions .

      Regards to a fellow sufferer .  Graham .