I remember reading a thread from a few years ago about mexiletine and also recall that Carter is one of those who has tried this medication.
First some background:
I have had EM for almost 6 years. It is localized in my feet and has not progressed but it has not gotten any better. I had a reoccurrence of an eating disorder and lost over 35 pounds and then it was not my choice. I couldn’t absorb anything I ate and my doctors said My body ate through the nerves in my feet and lower legs. A lot of my nerve disturbance is better but I can’t get rid of the burning feet and the EM symptoms. I know I am lucky in that I only flare when I am in heat or the room is too hot. For me, 60 is the most comfortable temperature inside (or colder) and I use a fan on my feet most of the time and wear flip flops at work and home.
I am lucky I can still work but only can because they allow me to sit with the flip flops and the fan while I work.
My neurologist wants me to try mexiletine and I am nervous because I am very drug sensitive. I got so sick from 200 mgs of Gabapentin I couldn’t eat for 4 days. So that scared me because all my trouble came from not being able to eat properly.
I have heard that mexiletine comes in capsules that are a smaller dose than the 150 mgs but I can’t find them and I can’t open these capsules.
Does anyone take mexiletine currently and have you been able to find it in 50 mg capsules? Can anyone share his or her experience with this medication in general?
I think you can get the liquid formulation of mexiletine, in which case you can start at 50 mg. I don’t know more than that, though (eg, if it needs to be compounded or what not).
I recently started Mexiletine 150 mg once a day in AM. On the first dose I had about 2 hours of no burning in my feet - the first time in 2+ years. The burning returned and was intense the rest of that day and night. Also experienced nausea but not too bad. The next day repeated and had 4 or 5 hours total burning relief followed by intense burning rest of day and night x next 4 days. By that time I had decided if I couldn’t increase Mexiletine I could not tolerate the relief followed by triple intense pain. The doctor agreed to let me take it twice a day every 10-12 hours. I then had 66 hours of constant relief!!! I was in heaven. Slept a couple of nights straight through. The burning was gone but the swelling on bottom of feet was still there. I didn’t care. Then the burning returned, usually after about 6-8 hours after a dose but not so bad because I know another pill was coming up soon. Since then I went 37 hours without burning, but it always returns. The only side effect I’ve had is nausea, not even heartburn. I feel sure in a few weeks he will let me take 3 x a day or maybe increase dosage. My mood is so much better, I had not realized how hopeless I had become. Good luck, Jordy. I hope it works for you.
I started mexilitine by cutting the capsules in half and putting half in some empty caps I got at the drug store. The dose here in the states is 150 mg capsules. I upped it very slowly over a month and am finally at 150 mg three times a day without any side effects and some relief. My doc said we can go higher, but right now I will just stand the flares.
Thank you for your advice. I contacted a compound pharmacy in New Jersey and they can make 50mg capsules for me if my doc will provide a prescription. I am sure he will. Iive in NYC and I found this neurologist “by accident “ last August because my new primary care wanted me to repeat the EMG study to be sure all the pAin was due to EM and not also from my back which is a mess. Dr Weaver is young but nice (not jaded) and he had actually heard of EM which was amazing. Anyway he is encouraging me to try the mexiletine but I am very drug sensitive and scared of making myself unable to eat again. But I think being able to start with only 50mg and then titrations up to the 150 will make me feel more comfortable. I am afraid to take it alone at home but if I get really nauseous I am worried about taking it at work. I never took any meds and now I have to take med for higher than my normal BP and tramadol and then I knock myself out to sleep with a cocktail of Gabapentin and Valium as prescribed. My EM is strange because I have no swelling except test my toes get Full of blood when I have to wear my shoes and socks to travel to work and home. Also I am only relative to heat. I have no flares if I stay by a fan. But I have become very hopeless because I had a crazy abusive life with my mother she controlled everything and she watched me starve myself and instead of caring she fed me my tiny portions. She wanted me sick and dependent so I wouldn’t leave her. She was divorced and I was her only child. I never had any regret or anger until the EM happened to me. The last foray into my anorexia was in 2008 to July 15, 2013 when I knew I was dying. And I stopped and decided to let myself live. The EM made me realize I was killing myself and I decided to let myself live but instead what I thought was the start of a new life was the end of my life. My toes went numb first in August of 2012 and I was so sick and weak and when my feet and legs started to burn, there was no connection between the burning and heat. They burned all the time and that’s why they say it was nerve damage because I ate through the nerves in my feet. It wasn’t till 8 months later that the EM started and my doc says anytime nerve damage occurs, EM can occur as a side effect of damaging the nerves. I have tried so many things and I still work full time. If I didn’t work I would be nuts because when I am not at work, I have to stay in watching TV and l,saying on my iPad. I resent watching the rest of my life pass me by when I never had the chance to have a life of my own. If the mexiletine would work it would be amazing. But I don’t want to get too hopeful because if it doesn’t then I have run out of options.
Thank you again and message me if you want. I don’t check everyday but I will check on weekends for sure.
Thank you so much again! All the best to you,
Jordan
Many thanks to you also. My reply to Wky is for you too. I am not so good at using the site and posting correctly. I thought I was going to send the same message to each of you as a private message but it is fine that it is public. I have no secrets about my EM.
Many thanks to you as a Always! I knew you took mexiletine and welcome you advice. As you can see from the long reply below I found a compound pharmacy where I can get 50mg capsules so I can tritrate up slowly. I really appreciate your advice and hope I can reach out if I have questions after I stRt the meds.
Melixitine was more effective for some EM patients at Cardiac doses. Some compound pharmacies talk about lower doses of it for neuropathy and at those doses is may not have an effect on EM. You may have to be put in a hospital to have you’re heart monitored to make sure the level is safe for your heart for up to three days when finding out the correct cardiac dosage of that drug. If the low dose doesn’t work a higher one might, but the side effect of that of course is it could kill you if it’s to high.