Hi I am the mother of a beautiful young lady (20 yrs old) who has been suffering from EM for almost three years in September. We have done Mayo in Arizonia and MS and she is now seeing some amazing doctors at UCLA. She has tried more medicines than I care to list. She is now on Gab and Cymbalta that breaks them up a bit but she still flares on and off during the day. This stops her from going out in public becasue of the flares can happen any time and when your face and ears turn red and swell that is the last thing you want. I am always reading and trying to find things to suggest to the doctors for her to try. I know she will never be “well” but I would love for her to be able to go to Target and buy shampoo without fear of a flare in her face and ears. I woul dlove any advise or medicine you have tried that has helped.
Blessing, Loving mom
Has your daughter tried Mexiletine? That is the drug I found success with. I used to not be able to go out and/or needed to carry ice packs with me everywhere. I understand how disabling that can be. Today my days are not that different from when before I had erythromelalgia. While most here have not found similar success with Mexiletine, there are published accounts of it being effective in even extremely severe cases of erythromelalgia. If she hasn’t tried it, it’d be worth a shot.
The following case study was published in the medical journal JAMA Dermatology in December 1999:
Thank you so much for sharing with me. This has been on my list to try. We just got the approval to see a cardiologist to see if we can try it. For my daughter to be back like she was before this hit or even be able to go out when she want to would be great. Again thank you for your advise. I am leaving no stone unturned. 
Good! I had the same kitchen sink approach, where I wanted to throw everything possible at the problem. Once I found a doctor who had treated erythromelalgia before, he explained in detail why he wanted to try mexiletine first. It worked so well he never had to prescribe me anything else. That was over 2 years ago now. I do take propranonol with it, which I had been taking for a few months prior to being prescribed mexiletine. Propranonol provides a modest benefit, as I’ve tried to stop it a number of times since and found a slight uptick in symptoms each time I did. Together they provide as close to universal coverage as I think I’m going to get. I don’t have to think about erythromelalgia most of the day and any symptoms I do have are easily mitigated. I don’t have to use ice packs anymore.
Mexiletine has occasionally caused heartburn, so I must always take it with food. I’ve not had problems with that since I reduced the dosage from three times daily to twice a day. I have occasionally used zantac (generic: ranitidine) to prevent heartburn. I’ve only used that infrequently.
My doctor did not discuss the more serious side effects that seem to prevent mexiletine from being more readily prescribed. Perhaps because I am athletic, relatively young, and already had an EKG and echocardiogram a couple years prior that was deemed to not be a concern. I am also fortunate to not have any dizziness or nausea either, which apparently is common in up to 40% of patients who take mexiletine.
I very much hope it works for your daughter. Good luck!
Elizabeth,
What a wonderful mom you are; I have EM and live in fear that my children might get this disease. I have had odd symptoms over the years but have lived to become an elder before I got full blown EM. Because I am medically trained I have been doing research on my own, and I know that having a medical “team” that is working in my favor also helps me feel supported. I use acupuncture, body work, and supplements like magnesium to support heathy nerves, alpha lipoic acid, and fish oil from fresh water mussells. The med that has been most successful for me are gabapentin, and CBD tincture. I think the larger challenge, once the symptoms are contained at least 80% of the time, is to get back into life. Fear can make for a very small constricted life. I take very good care of my feet (getting pedicures at least once a month, requesting cool water for the pre-soak. Because I believe that Em is a small fiber neuropathy, meaning that we sufferers have very small dysfunctional blood vessels, we need to be vigilant about wounds, especially on extremities, which are further from the heart and thus harder to heal. I take photos with my phone whenever I have a flare or a new area of warmth, and keep really good records of the ongoing saga of this disease.
My warm regards to your daughter. Hope is what we share, and there is no such thing as “false hope”.
Take care,
Just to expand a bit off motherlode’s discussion of blood vessels, my EM seems to be of the subtype that involves reactive hyperemia. My affected tissue is almost certainly hypoxic when not flaring. I have abnormally low skin temperatures in affected areas when not flaring. Since mexiletine is effective in blocking my flares, the affected tissue is left very, very cold unless I am actively moving about. The pathogenetic mechanism for this is thought to be increased arteriovenous shunting.
NORD (The National Organization for Rare Diseases) describes it as:
Constriction of some precapillary sphincters while arteriovenous shunts are open may lead to increased total blood flow yet decreased transport of oxygen and nutrients to cells, resulting in a simultaneous insufficient oxygen supply (hypoxia) to and excess of blood (hyperemia) in affected skin. The presence of hypoxia may in turn trigger increased, localized blood flow to skin regions, thus exacerbating pain, heat sensation, and redness.
Mexiletine would seem to block the hyperemia but leave the hypoxia.
Thank you so much for sharing! I do wish she has it I. Her feet only, that would help but when her face and ears flare I can see that pain and how she can’t think or process whatever she is trying to do. We continue to pray and push forward even if it is the smallest baby step! Again thank you for sharing your insight and wisdom.
Elizabeth,
One of the most difficult parts of this disorder is “getting back into your life.” My opinion, for what it is worth, is that your daughter should bring ice packs with her, and venture out to Target to buy shampoo, or just to do something normal. This disease/disorder, (whatever you want to call it), makes our worlds constrict along with our vessels, and a greater danger than pain is staying in a small room in fear all of our lives. I carry a water and ice cube spray bottle that has a fan (got it at CVS, really cheap) and I take it with me when I go out. It feels good! Also, remember that you must "hold’ the hope for her that things can and will get better as medical science progresses. There are good people working on ways to control EM. To lose hope means that you both sink.
Stay afloat, and stay in touch.
Thank you for your words of encouragement! We have not given up by any stretch of the imagination. It is just readjusting to a new normal.
I have the exact same problem, I’m taking the same things. I’m looking for something too.
Wow not many people have it in the face and ears. Can I ask how long you have delt with this and how you do in public with a face/ear flush, pain and swell?
started about 2 and a half years ago, it’s really Hard to go anywhere, so I don’t go out unless I have to. When I do, I have to have the A/C on high, and I take a frozen water bottle and a cold wet rag,or I use those cooling towels you get wet. I live in Arizona, so it’s literally Hell, especially in the summer.
Elizabeth2:
I went through about 3 years of trying various meds, etc. I’m very active (now 40, ahhh…), but definitely share some of the same symptoms as your sweet girl.
Although he’s passed away, Dr. Jay Cohen offers a lot of great info through his medical journals that may still be out there on the web. If not, message me and i can send you my copies. I actually consulted with him via phone 3 week prior to his sudden passing. He was so helpful in my search for a “cure”.
While no “cure”, I am now very controlled and flares are less painful and less freququent. What works for me:
Propanolol 20 mg in the a.m. If I take later - makes me flare. So weird!
Buttebur 3 x day (can buy at healthfood store or online)
Feverfew 3 x day ""
Venlafaxine (Effexor) 150mg at lunch (this stuff makes you feel yucky when you first start taking it - flu like - BUT, so worth hanging in there)
Midodrine Compound Cream .2% - Put on feet every morning then compression (very light) running ankle socks for a 20 minutes or so.
CBD Oil - NuLeaf Naturals out of Denver. No worry! Not illegal, no THC. I use as directed. 10 drop under tongue at night for one minute, GULP water after so I don’t taste. Helps protect nervous system.
Prior to my diagnosis, I had never been on prescription meds. My neuro in Dallas works with me to try and limit the amount I have to put in my body. Always searching for natural remedies, etc. As difficult as it may be, I highly recommend some sort of exercise every morning. I 100% recommend it as it too seems to help.
I wish you and your daughter the best of luck. Appreciate everyone sharing their experiences and what does and doesn’t work for them. Take care and God bless you and your girl!
Chrisr99 I am so sorry! I so understand. We went to MaYo in Arizona last summer for a week and it was super hard. We live in SoCal and it is mild here except for September (gets in the 90’s). We have thought about moving somewhere cooler but then people would run the heat in places and she would never be able to go anywhere. It is such a hard disorder and so hard to explain to people it is not just the red ears and face. It is hot flushing, swelling and painful. Thanks for sharing. We have appointments in a couple weeks to chat about trying a couple different medications. Fingers crossed.
It really is, my dermatologists want me to meet with Drs at Mayo too. Maybe they can figure something out to help us all from suffering. I’ve got my fingers crossed too!