Paroxysmal hemicrainia

[Harleyka]

Hi everyone, I am new here. I suffer from paroxysmal hemicrainia that was wrongly diagnosed for years. The consultant told me it wasn't very comman so was wondering if any one else had any experience of it.

[Bananas5]

Welcome on board.

Yes I have heard of it but never met anyone who has the condition.

Do you manage to control it with meds?

x

[Harleyka in reply to Bananas5]

Hi, No it is uncontrollable with meds most of the meds that should control it the consultant won't allow me to have because of other health problems like indomethacin. I was wrongly diagnosed for years previously and given standard pain meds e.g. carbamazapin which were completely ineffective. I now have a procedure done which I would have to look up the name for as I can't remember it which involves electrifying the nerves in the hub which temporarily kills them and I get about a year of reduced pain and have to have it repeated as it then comes back with a vengeance.