I have recently joined the Living with EM forum. I wanted to ask people’s advice about my situation, which is bothersome EM of the ears in particular. Without medication they flush for three hours at a time; with medication they can flush for around an hour and go very warm. There are also broken blood vessels on them from the regular flushing. I find the condition embarrassing, irritating and (without medication) painful.
Currently I take moxonodine and hydroxychloroquine – the most effective combination to date for me. Botox injections also help. I have tried beta blockers and pregabalin and neither have been effective. I have not, however, taken gaberpentin yet. I am in the UK and wondered if anyone has managed to get mexiletine here (as I know it requires a special license to import it unlike in some other countries)?
I’m not sure if my current medications are the best or sustainable to take in the long term, so I am interested if anyone has found particular medications helpful for the ears?
Even with medication they are still very sensitive to heat, wind, etc.
I wondered if anyone had found an EM specialist in the UK who had a particular understanding of how to treat EM of the ears (I know the focus is more usually on the feet and hands)? I would be happy to travel to another country for treatment if there was someone who really knew how to treat EM of the ears as well.
I have been diagnosed with EM of the ears by a dermatologist with an interest in the condition but he did not have that many suggestions for treatment, so I am keen to find a specialist with more experience of treating this if anyone has suggestions.
I have read through the threads on ears on this site.
I look forward to any advice and recommendations you have – thank you so much for taking the time to read my experiences.