I still don’t know for certain I have a sodium channel mutation. After finally finding a doctor experienced with treating erythromelalgia, he suggested Mexiletine as a first line treatment. He initially thought I more likely had CRPS. After the Mexiletine effectiveness, I think it was presumed I had erythromelalgia. While certainly not perfect, since then (September 2015) I’ve felt it good enough I have not investigated further.
Hey Carter, can you run now without a flare? I read earlier it caused a flare when you ran at night and was worse for 7-10 days… Then I read you were in PT for knee injury. Can you run now without a flare? And do you still feel like your endurance is low because of the combo meds? Melexitine and propranolol? And do I have this right that it’s the combo that helped not just melexitine? Thanks!
Yeah, I can. I’ve not been running with any regularity, but I ran 4 miles outside one night last month and it was well tolerated. I believe the statement you are referring to was written back in 2015. Since then I’ve found if I’m consistent I become better acclimated to physical activity (cycling, running) and the first few times can modestly increase the likelihood of experiencing erythema after prolonged stretches of inactivity.
Propranolol does cause an abnormal heart rate response to exercise. That is a known fact. I’ve noticed it myself, as I experience a significant increase in aerobic capacity if I don’t take it a few days. Cessation tends to cause a modest increase in the likelihood of experiencing erythema after 4 or 5 days. I think the longest I’ve not taken propranonol since I began taking mexiletine is about a week. I was taking propranolol prior to beginning mexiletine therapy on August 1, 2015.
Thus, mexiletine provides the vast majority of coverage, but propranolol is modestly beneficial.
I hope that helps.
Yes thank you so much for your response-
Hey Carter, how you doin’? I’m still taking mex 2X a day. Who knows if it’s helping? All I know is I’m burning less and don’t want to stop it just in case. If anyone is interested in such things, the 23&me dna swab will give results for those of us who have primary EM. It’s on the SCN9A gene strand ( there are two others but I can’t remember exactly their genetic designations.)I have anomalies here and there on the strand. Why couldn’t I have inherited a genius brain, big boobs, or drop dead good looks? Oh no, I got an inherited form of neuropathy. Oh! Another genetic misadventure popped up about 3 months ago. Get this…map dot fingerprint Corneal Dystrophy. Have you ever heard of such a rediculous disease? Makes me wonder what’s going to pop up next. Will I grow another arm? More fingers? Wait a minute…that might be cool. Speaking of cool, I surely do hope you’re staying that way.
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I definitely have never heard of that condition. Another medical condition is the last thing any of us need! As for myself, I’ve been well. My medication continues to work and I’ve not had any major problems. I think I occasionally have symptoms in my ears now, but it’s quite mild and sporadic. It’s not painful, more an annoyance. My EM symptoms as a whole are more along the lines of annoyance than painful. I think that is attributable to the mexiletine. I feel I got quite lucky with its effectiveness for me.
Unfortunately, all is not well. My dad died 2 weeks ago. It was sudden and unexpected. He had a heart attack. The way it happened was horrific. I feel awful I wasn’t there and that my mom (who is disabled) was there alone. I was on the phone with her as it happened. It was the worst day of my life.
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Carter - I am so sorry for your loss. Prayers for comfort for you and your mom.
Carter, I’m sorry to read your post. I’m new-ish to the forum and don’t know you (though reading some of your posts have helped me a lot) but couldn’t not comment… Condolences to you and your family.
Oh Carter,
I am so so so sorry about the loss of your dad. There’s absolutely nothing I can say to ease the pain. Just know you are not alone
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Thank you all for the condolences. It was a great disappointment, but I am adjusting and looking forward to spring. Winter is insufferable when you’re grieving.
Starting Mexilitine. I have been advised to start very slowly to avoid side effects so it may take 6 weeks to get to a therapeutic value. I’ll update here as it goes. I’m somewhat hopeful, but as we all know “your mileage may vary”.
What dose are you starting at?
50mg once a day. Then 50mg 2x a day, then 100mg 2x a day and finally getting to 150mg 2x a day or maybe 3x a day. I know I won’t see improvement until I get up to a therapeutic does, but want to minimize side effects and start slow. I have a lot of hope for Mex, but want to make sure I can tolerate it.
I know it’s helped you quite a bit. How did you ramp? I’m sticking with slow and steady regardless.
@CarterDK at what does did you start to see improvement?
I don’t want to set your expectations too high, but for me it was basically like flipping a switch. I took a single 150 mg dose and within that first 24 hours i noticed a difference. Approximately 36 hours after my initial dose the perpetual flaring cycle I had been experiencing stopped. Because I experienced dramatic improvement and no side effects, I went to 300 mg (150 twice a day) after just 4 or 5 days. A week after that I increased to 450 mg (150 three times a day).
The vast majority of the theraputic benefit occurred for me at just 150 mg a day (a single pill, once a day). I was hopeful increasing the dose would eliminate 100% of symptoms, but that didn’t happen. I didn’t see a major difference when I increased to 300mg and then 450 mg. Overall, mexiletine reduces about 95% of my symptoms. Of that 95% reduction, I would say 80% occurred at just the single dose. I can achieve a functional 100% reduction with behavior modification. I take 300 mg or 450 mg a day now. Because I have to take it with food, sometimes twice a day is simply more practical. Last summer I took 300 mg a day for 2 consecutive months. I didn’t think it worked quite as well as 450 after awhile, but the difference was very slight. I don’t notice an immediate difference if I switch to 300 mg.
That’s very hopeful. I really just want to get back to where I was before I broke my leg which was I could wear shoes and really thin socks to customer meeting during the day. Generally kicking off the shoes under the conference table. That allowed me to work. I really don’t want to change jobs as I love my job and I get paid well. I also need to travel, but I can travel in flip flops. So anything above that would be gravy. I was advised to start slower to avoid side effects to someone with more experience than me. No harm I don’t think in starting small and gradually increasing. I’m not expecting much until I at least get to 100mg a day. What would really be nice is if this works well, I could then cut down on Lyrica. I take 600mg a day and I have no side effects except I blame it for my short term memory loss. It might just be because I"m 58 and work in a highly technical field that throws new stuff at you every day. But cutting Lyrica would be an added win. I’ll take it slowly, make one change at a time, and see how it goes.
Don’t mean to sound presumptuous, but my favorite remedy for heartburn or acid reflux is baking soda. I prefer it over the pills. I don’t have any chronic digestive issues but I used to. Anyway, if you haven’t tried it, the recipe is on the box. Really works well for me. Hope your symptoms are improving. It’s always something with this bullshit, right?
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Thanks for the tip @Monkey
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I started today. I took a 1/2 (just poured out 1/2 the stuff and resealed the capsule). I had a flare in the first 20 minutes, but this was probably just a normal flare for me. I had been to the gym. Doubt it could do anything that fast. I’m going to take 75mg for a week and then go to 150 and titrate up. I was told to start slow so going to do that and see how it goes.
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Customer meetings and was unsure how Mex was effecting me so stopped until yesterday. Yesterday too 1/2 capsule in the morning with no flares. In fact feet were cold and wore socks until 3:00 PM. So far so good.
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