Hi Dene
Firstly do you know if you have primary or secondary EM?
It’s important to exclude any potentially treatable secondary cause.
Prof Andre Van Rij, surgeon in Dunedin has experience with EM, as I recently read a research publication of his providing evidence that the frequency of EM is in fact a lot higher than is usually quoted. The paper established that quality of life is significantly adversely affected by EM. I suggest phoning his secretary and seeing if he can recommend anyone in ChCh. I worked with him in the mid 1980s and he’s a genuine chap.
The current medication options are generally at best only partially helpful (but better than nothing) and it may take some time to explore what may suit you best with minimum side effects. The sodium channel blockers hold promise and some are under active clinical trials so hopefully it won’t be too long before we have some break through. There are a few sodium channel blockers that are in use already. Despite hesitations about big pharma at least they have resources to direct towards it as the potential benefit is way broader than EM eg trigeminal neuralgia, sciatica etc.
Progress in traditional medicine has been incredible in recent decades with many conditions becoming treatable now that weren’t not that long ago, certainly in my practising career of over 30 years.
Non mainstream options can be very helpful and worth considering for EM eg meditation (lots of freely available stuff on YouTube that I use all the time), acupuncture & vitamins amongst others. I’m about to start a trial of Bob’s heating protocol as our fellow posters are getting benefits.
Then of course exercise, sleep, nutrition, supportive family, friends & colleagues.
I get some benefit from a night dose of pregabalin. Whatever medication you may try go slowly with dose increments to allow your system to adjust. Your GP can manage this if they are open to it, even if a lot of specialists aren’t. But be careful not to lump all doctors into that latter category. Once you find a supportive one it can make all the difference. There’s an overlap in potential experience between vascular surgeons like Andre, neurologists, rheumatologists and pain specialists.
Best wishes