No problem! Hopefully it works for you. Have you tried Mexiletine? If so, how’s it make you feel? I’ve been having flare ups more frequent and in my ears more than normal and the only common denominator is the Mexiletine. I sent a message to my doctor today telling him I will be discontinuing it.
Mrehage1989 -
yeah I tried mexiletine, and as I said above, I found it made me way too hot … I was on 0.6 mg amlodipine at the time, and honestly if felt like i just upped the dosage on the amlodipine (I had settled at 0.6 mg because anything more turns my ears into lava, but i do get benefit from a little bit of amlodipine). I couldn’t get the balance quite right, so I put a pin in it. Have you tried a calcium channel blocker like amlodipine before? Would be curious if thought similarly (how mexiletine sorta feels like a weak calcium channel blocker).
I felt more relief from lidocaine topical than mexiletine (but lido topical doesn’t last that long, and there is a period of burning before I feel the anti-pain effects…) even though mexiletine is supposedly the oral analog of lido.
I hope your ears calm down soon. Sometimes when my ears go berserk, i’m afraid to think at all because i don’t want to send any more blood to my head 
Best,
Nope!
My experience was very atypical for EM. I first had my hematologist order phlebotomies (modestly beneficial) about a month after my symptoms started. Then I tried propranolol because it was a prescription I already had in my closet (also modestly beneficial). A few months later, I told my HMO if they didn’t find me a doctor experienced with erythormelalgia, I’d make trouble for them. They then found me a doctor (an anesthesiologist) who had treated EM five or six times before. His idea was mexiletine. I even suggested an SNRI like cymbalta, but he shot that idea down. He said the first thing he wanted to try was mexiletine. It was a home run. I didn’t need to try anything else. That was 3 years ago. I’ve taken mexiletine with propranolol since then. Thus, the number of treatments I had to try before finding what worked was very few.
standing_cat
Just following up to see if you’ve started the LDN and what your thoughts are…? I’ve been taking it for almost 3 weeks now and so far and I’ve noticed some Relief. Although it isn’t stopping the flares, it is helping with the pain and takes the edge off. I also have noticed the flare ups may not always last as long as they normally would. I hope your getting some relief as well. I wonder if I mixed LDN with something else, if I would get even more relief. Sending good vibes your way! 
Thanks
Megan
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Hi Megan!
Thanks so much for checking in and sharing your experience! I am glad you are noticing some improvement – and perhaps you will get even more over time
I was on 4.5 mg LDN for ~2-3 weeks, and I think it was helping with the pain a bit. One night my ears flared as usual, and I got the cold pack out like, here we go. But I didn’t end up using it. My ear pain is usually off the charts, but for some reason it was blunted, like the pain couldn’t transmit up all the way to my brain?
Unfortunately, I got some side effects – being depressed / unmotivated. However I find I am unusually sensitive to anything that mucks with the brain at all and that isn’t an antidepressant … It’s frustrating! Striving to be un-depressed / motivated lol has been priceless to me as I try to keep on keepin on in spite of the burning. So, I decided to drop back on the LDN and do a slow ramp-up to minimize side effects and hopefully find a sweet spot in terms of dose that I can tolerate…
Thanks for the good vibes! Sending some your way, as well! Keep me posted xx
So sorry it didn’t give you the relief you were hoping for. I too have the burn in my ear but not as often as my hands and feet. While taking Mexiletine my ears and face started getting red everyday badly and I couldn’t ever get comfortable on my pillow at night. My feet are the worse. I had to get off the Mexiletine because It was causing flare ups in places such as my ears and face which wasn’t a daily thing. What are you currently taking that gives you relief? I’m curious if my doctor puts me on maybe like a propranol with the LDN, if I get more relief.
I have noticed since taking LDN, I have been getting this sharp pain in my big toe and it would shoot all the way up to my thigh but would skip my knee area. Not sure if it’s just a coincidence being that I work out a few times a week.
Thanks
Megan
Yeah I think sometimes a multimodal approach can sometimes be helpful for people. I have tried propranolol in the past but when I take it daily, it makes me a crying mess on the 4th day lol (frustrating since it was moderately helpful for the EM). However I think most people seem to take propranolol and do ok (in terms of mood).
Currently I take cymbalta and mirtazapine with some success (and propranolol as needed, just not daily). I notice less pain, less flaring (otherwise I’d be flaring 24/7), and the mirtazapine helps to knock me out at night. I’ve had the most success with a 1 hr outpatient lido iv, but effects were temporary.
I am fortunate that I have doctors who are advocating for me to try continuous lidocaine infusions (5 day) and IVIG (in light of recent thought that idiopathic EM/SFN cases can actually be autoimmune). We are currently waiting for insurance approval.
I hope the sharp pain in your toe subsides. It seems that when LDN is used for some things (eg MS), some symptoms can get worse before better – it’s an interesting drug and wish more research is done on it.
Good luck!